My Hart

From the minute he was born I knew something was different with Hart.  The nurses struggled to straighten his legs to measure his length.  He suckled hard, shallow, and often until I bled and he spit up black.

I took him to get his lip and tongue tie released.  All issues persisted.  I took him to a chiropractor, cranial sacral therapy.  I took him to a pediatric ophthalmologist when I noticed he couldn’t see his hands and his eyes stayed crossed longer than normal (update: he doesn’t have any vision issues and his strabismus is minor enough not to be addressed, just monitored).

Well, I knew.  I always knew.  I just knew…

I told our pediatrician – she said he was fine.  I begged for a neurologist referral and when I got it – he said he was fine.  I then begged for a neurologist who specializes in Cerebral Palsy (I jumped through hoops to get this appointment, so many hoops) and she said he might be fine.  I then begged for an MRI.

Eight days after the bottom fell out of my life I put my son through an elective MRI with anesthesia.

I sat at a table with my husband for an hour as we waited for Hart to come out of the MRI. Tears gushed from my eyes as I blankly stared at the cars on the highway – but I wasn’t crying.  My husband asked me what he could do.  “Get me a Coke.”  Those tears were for a lot of things, but mostly the unknown and mostly Hart.

Three days later Hart’s neurologist called me.  Hart has minor Periventricular Leukomalacia on both sides of his brain (namely the white matter), but more so on his right.  She said that this explains all of my concerns: the rigidity in his muscles, the (somewhat) delayed physical milestones, the lack of fluidity with arm and leg movements, the stiffness in joints, the weakness in his lower back, the somewhat favored use of his right side.  She told me this mainly occurs in premies and since he was not a premie (he was born at 37 weeks gestation) she believes this damage somehow occurred “a couple months before he was born.”  She explained that he is at risk for being diagnosed with Cerebral Palsy and will be monitored.

Hart has irreversible brain damage, it’s called PVL.

Like I said, I already knew.  I immediately called Jimmy to tell him.  He was surprised, which surprised me.  Then I called Missouri First Steps to get him enrolled in the therapy he’d been previously denied due to only having very minor – if any – developmental delays, but now his diagnosis qualified him.  I then called each one of my family members individually in order to give them the respect to grieve (because I know my son affects many more people than just my husband and myself).

That night Jimmy and I went out to dinner for the first time in weeks.

I explained to Jimmy how we are not somehow compromised or punished for having a child with special needs (whatever that may or may not mean!), we are BLESSED.  I will go on about this another time but just know that I do not see his diagnosis as anything but a gift: we were chosen to take on this special person.  I truly feel as if we’ve doubled down and won the underdog hand.  Truly.

This doesn’t mean his diagnosis isn’t a challenge… or a little bit sad, or that I don’t feel a little bit guilty.  Because yes – just yes – to all of those things.

I pray for a miracle and I grapple with how to navigate his life.  Thirteen days after his diagnosis I finally put these thoughts to paper.  This is a heavy challenge as a mother: where do we go from here?  This is where: one foot in front of the other.

God, you’re talking to me.  I hear you.  Let’s do this.  All of it.

  1. Bless you and your family. Hart is a lucky boy. You can do this, Mum’s are the most amazing creatures in the world! You’ll find strength you never knew you had. Well done for following your gut. My daughter has Spina bifida and she is the greatest blessing to our whole family. Be brave and good luck on this journey. Xx

    1. You blow me away. I want and wish nothing but the best for you and your family. You are a fantastic mother! You inspire me. 🙏🏻😇💕

      1. I can feel your Hart…. your past two blogs have hit so close to home. It’s penetrated to pain I thought I had been able to manage. Your focus is clear… there will be good days and bad days. But they are your days. Hold them close to your heart. Surround yourself with good energy. My biggest learning lesson in life is….happy people don’t judge. Surround yourself with happy people.

        1. Meghan, my husband and I have just recently been faced with a very similar situation – twin boys, one diagnosed with PVL. It is all of the things that you so eloquently wrote. I would do anything to alleviate any hardship that he will ultimately face but I have to keep telling myself that my strength will be his and that we will be just fine (…there are hard days too)! Sending you and every family with similar challenges endless prayers and good thoughts! ❤

          1. Prayers for Hart and your family! My identical twins boys are currently in the MO First Steps program and the therapists are amazing.

        1. You are a strong Mother who loves her child unconditionally. You knew something was wrong and pushed the drs for answers and when one dr couldn’t give you answers, you advocated for your son to find the answers you needed to move forward in helping him. You are a great Mom and I will keep you and your family in my prayers.

        2. We don’t know you, but we all feel like we do. You’re a girl’s girl, smart and supportive, forgiving and poised, a fantastic wife, mommy, step-mom, daughter, sister and to all of us, a friend. You are so courageous to share your life with us . . The good times, the times that give you (and us) a pit in the stomach. You are strong and brave. You are in such a unique position to not only have this platform, but to be blessed with this tribe of women who are praying for you and your family and your sweet baby Hart. We are fierce and protective and will help you carry this load. Hugs, prayers and love to you sweet girl. We are in your corner and we know Baby Hart is destined for great things!! ❤️

      2. I felt like I was reading my own story…for the first year of my sons life, I told everyone including his pediatrician that something was wrong. Everyone said he was just delayed in his development. At 11 months old I told his pediatrician that I wanted an MRI, he agreed, and we received the diagnosis,
        Periventricular Leukomalacia.
        I won’t lie to you, it has been a struggle, but my son is now 26 years old and he is happy and thriving. He will have challenges for the rest of his life. But, we (his parents) will always be by his side and to advocate for him no matter what obstacles come his way.
        I pray that you and your husband will find the strength to travel this journey with your son. You’re stronger than you know.
        God Bless You!

    2. My husband was born at 32 weeks in 1983. He has Spastic Diplegic Cerebral Palsy. His parent, and mom especially, were his warriors and cheerleaders and he has flourished in his life. He uses a wheelchair, and his eyes still look a little funky when he’s tired lol, but he is an incredible man. He is an amazing husband, a college graduate, and works hard at a full time corporate bank job. We are in the process of IVF to have children, and I know my husband is going to be an amazing father. His life is full and accomplishments are many.

      You sound like a wonderful mom, and with you as his warrior and cheerleader, Hart is going to live a wonderful life. I hope you hold onto that as you work through some of the extra help he needs to get there. Sending love to your family…

        1. I sent a reply a few minutes ago but I also wanted to share it with my family. Could you please send a copy of it back to me. You have my address. I also wanted to share it with someone, in my life who needs to hear this.

  2. Meghan- you are amazing. May God continue to bless you with the grace and love that you already possess.

    1. A mother’s instinct is always right. I had a similar situation with my son, different diagnosis but had to fight for someone to listen. Hart is lucky to have you as his mommy and advocating for him 💕

      1. A good friend of mine has a son with CP. He just graduated college and is on his way to becoming a sportscaster. You are 100% correct. Hart is a blessing. 💜🧡💛💚💙

      2. YOU are a gift. A gift to your son who needs an advocate, a gift to all the mommies out there struggling to seek understanding as to why them, a gift to your followers for baring it all and helping them to understand that although you live a different life than them, you aren’t different and most of all, a gift to your family. You are amazing and they are so lucky to have you.

    2. You’re such an amazing mother! You fought for your baby!

      When my niece was born my whole family knew something was not right! We kept telling the doctors and they would say shes fine. At 5 months she was diagnosed with blood clots in her leg. 3 years later I told my sister that my niece looked different, she looked swollen. My sister took her into the doctor and they said sinus infection. My heart was not ok with that diagnosis, so I said go to the ER. My sister did and my niece was dying! She was in heart failure, kidney failure and lung failure! She was rushed to a childrens hospital 3 hours from my sisters home town. My niece is now 14 and has many many medical problems.

      Families have to fight for these babies, we can feel it in our hearts and doctors should really listen to families! God bless your family!

  3. You are an incredible Mother. What a beautiful way to look at your journey together. Each child is unique and you will be the best you can be, for him. Thank you for sharing your story 💙

  4. Your son has an amazing advocate in you. You knew something wasn’t right and you fought till you got anwers. Keep up the amazing work for your babies and lots of positive thoughts for great therapists.

    1. Hart is very lucky to have a mommy that advocated for him. I wish it hadn’t been so difficult for you. Now that you have an answer you can get him the support he needs to achieve a beautiful, healthy life. I admire your willingness to share your struggles. Life is not always perfect and your honesty is refreshing. Thank you and all the best to you and your beautiful family!

  5. You are a warrior mama and God knew Hart would need YOU to be his advocate! You are amazing and Hart will shine because he has you!

    1. thank you for sharing your story. I’ve been exactly where you have been. My son is 16 today and it’s been a journey but a beautiful one. God blessed you because he knows you and your husband will get through this. It takes a special kind of mama to know their child and what’s best for them.

    2. I was 12 when I first got sick and my pediatrician/family doctor who delivered me and treated me for those first 12 healthy years, upon me getting sick and my mom asking “what’s wrong?!?”, told me I was nothing more than a faker and a head case and to go see a psychologist.  We left him, went and found doctors who would listen and 24 years later, I have about 12 diseases now stemming from having chronic autoimmune issues that had laid dormant until a stressor (puberty) started them up.

      I wish I could say he was the first and last doctor to treat me like I was nothing, but he wasn’t.  But I’m not taking shit (pardon my language) from anyone anymore because my blood, my tests, they indicate that YES I am sick, so don’t treat me like I’m crazy.

      Shame on those doctors!  And good for you for pushing.  You have to be your own, or your child’s own, advocate when it comes to healthcare and never stop pushing for answers, especially when your gut tells you there is something wrong. 

      And never ever let any doctor make YOU feel crazy because you are being an advocate for your child.  You are and will always be your child’s voice when they feel sick or run down, and yes doctors always want to talk to the patient first to get everything from them, even when you are a child.  But I can tell you, at 36, I still need my mom to be my voice sometimes because she’s always watching and observing and recording in her mind when I’m feeling more sick, more rundown, what may have been a catalyst to said rundown and if I’m feeling sick at the doctor’s appointment, she’s the coherent mind that can answer some questions better than I can, because I’m not thinking straight.

      Doctors work for YOU.  That’s the whole point of their job, making the sick well, finding the problem and fixing it.  They’re not keeping the healthy healthy, the healthy are healthy and stay away because they don’t need doctors.  We, the sick, are the boss who hires the doctors, we know our bodies, we know when things aren’t right or normal and we expect to be treated fairly.  To be listened to, to be respected.  And when that doesn’t happen, fire them, because guess what, there can be bad doctors amongst the good doctors.  That’s one thing I’ve learned after 24 years, there can be bad and you don’t have to put up with bad when there is good out there, good who love their job and want to do it well.

      Sorry for the novel.  I wish you good luck with your son!

  6. Praying for you, praying for Hart, praying Jimmy can overcome and bring his family and your trust back together. These are the things that matter the most… none of the other noise.
    Sending you a loving peace filled hug. You can do this Meghan, you are Mom…hear her roar. But remember to self care. If Mommy breaks…everything tumbles with her.

  7. You are amazingly strong and God knows you can handle this and everything else he has thrown your way. Thank you for sharing your brutal truths. As Moms we just know when something is off, always go with your instinct. Saying prayers for you and your family from Colorado.

  8. I admire you for your brutal honesty. You have been faced with unspeakable challenges and yet you always seem to find the right side of things. I have loved you since you first appeared on RHOC & I am so glad I get to see the motherly side of you and your precious babies thru insta. Stay strong, Mama!

  9. Oh Meghan, may God be with you. Our son is 24 now and had a similar journey to diagnosis. I was told I was a nervous Mom, but 3 years into his life we finally got a diagnosis. Thank you for sharing this. You will inspire so many.

  10. You are just amazing and I wanted to let you know from this mommy of 3 under 4 I hope that when I face any future hardships with my children that I have half of the strength that you have shown in this

  11. Hi Meghan,
    I have beautiful identical twin boys. They both have different needs[ I literally dont know how to say this yet, we also just got diagnosed] I love the way you look at things, I wallowed in self pity for a few weeks but now I am doing what I can for them. Keep going you are an amazing mama. Thank you for sharing.

  12. God blessed you with this most special of babes. You will meet each challenge, I just feel it. Be strong and lift little Hart, he may need you in ways your other babies do not. Know there are many people keeping you and Hart in prayers, Megan.

  13. Hart was placed in your arms for a reason. He is blessed to have you as a mother. I don’t know you but I know exactly what kind of person you are; the best kind. The honest kind. Equal parts grace and strength. God makes no mistakes. Hart chose you. And now he has all of our hearts. God bless you momma. ❤️ This is going to be a beautiful journey.

  14. You are persisting, and doing all the right things for your Hart. I recently retired from 37 years teaching and supervising special education programs, K-12. I’m now on the Board of our local United Cerebral Palsy organization, that provides services to developmentally delayed adults. I’ve watched parents cry, go numb, and then start to slowly take the path of warriors, for their children. There’s no guidebook. But you are doing all the right things.

  15. A mother knows period. I knew with my son as well at 16 months, he was a year before he was ours due laws to Ukrainian adoption laws. We don’t have a official diagnosis but “other”. He’s 18 now and we have been severely challenged by this sweet precious young man. Bi wouldn’t trade him for anything!!!

  16. Reading your story, was like reading my own story with my precious baby boy. Although the diagnosis are very different and our journeys will be very different, there is a world wide community out there that has your back and knows what you’re going through. I’ve followed you for a while now but don’t usually comment, but your strength and attitude I feel mirrors my own and us strong mommas gotta stick together! Keep up the great work and I wish you, your precious boy and family all the best. You got this 💪💙

  17. You’ve faced so many challenges lately. You are an amazing mommy and I wish I could give you a big hug; I hope your life is filled with friends and family that fill all
    Of your needs. Must love to you; you positive little sunbeam!

  18. Megan.. you are such a strong intelligent loving woman and you will get through this 49 years ago. I don’t even know what the diagnosis would be today but was told that my son would never go to university and really never too much with his life. My husband was a radiologist and this was so difficult for him to come to terms well he prove them wrong I’m today my son is a successful person‘s man the wife and the daughter entering University. He did complete university successfully awesome upstanding young man. Time… Patients… Love and willingness to get you through this. I wish I could talk to you. Sending you love.

    1. Google Terence Sanger MD.
      He specializes in child neurological and movement disorders. He is a family friend and world known in his field. His research lab is at USC and he is at Childrens Hospital. Your neurologist should know him or know of him. It takes a village to look out for our children. I hope this helps. My prayers are with you and your littles.

  19. My grandson was diagnosed with autism. We always knew there was something wrong and the medical doctors kept saying he’ll just be slow everything’s going to be OK but we knew that there was something wrong. It’s Innate, something that you just know, something that you feel. You know that there is something wrong with the child. I am so glad you listened to your inner most self and yes it is a precious blessed gift and A challenge. God gave us this special loving warm funny respectful right boy. That is what you’ll get with love and perseverance. Good luck and let us know your story.

  20. I’m so sorry Meghan. I think it’s terrible how after spending every day with your child and knowing every thing about them that we have to basically beg a dr to agree to testing or to see a specialist. I went through that with my son for 9 weeks. My son was walking like he was drunk. I rushed him to the ER and they did a lumbar puncture. They told me he had viral meningitis and that he would be better in a couple of weeks. It was just a virus. I spent 9 weeks trying to get dr’s to believe me that something was wrong and it wasn’t meningitis. I made so many trips to Children’s Hospital. Finally, the last trip he was seen by one of the pediatric neurologist and he agreed with me and admitted him. I demanded a brain biopsy. My son was diagnosed with T-CELL lymphoma. Brain cancer in the fluid of the brain and spine. Meghan. He spent 11 months in Loma Linda Children’s Hospital before his tumor board made a mistake and put him into a coma that he would never wake from. It’s been hell. I will tell you though that you need to lean on God. You need to lay it at His feet. Your babies are a gift and you are such an amazing mommy. Keep up the determination and never, ever, let a dr tell you what is best for your baby. Fight them tooth and nail. Write everything down. All tests, therapy etc.. and the dates. It will help so much. Mine became my best friend. You’ve got this momma. Praying for you and Hart. Sending you a hug. ❤️

  21. I knew from the time my son was born that something was different about him, he is Austitic with extreme anxiety, it has taken us 6 plus years to get to a good place but every day is a challenge. Being an advocate for your child is a tireless job but I wouldn’t change my son one single bit, he is the light of my life. The grieving part is especially true, my son’s father still struggles with that, it adults that have the hardest time. Stay strong hug your children, cry, and remember you are important too.

  22. You are beautiful in every way! You are blessed to have Hart and he is super super blessed that God chose you to be his Mommy here in earth! I will pray for all of you! You are a beautiful writer!! God bless you and your family!

  23. Take all the steps. You already took so many to get a diagnosis, don’t stop. I know you won’t, but you’ll find you need to hear that in the coming days. You are brave, strong, smart, and persistent, but you are also human. You don’t get one issue at a time, you get several.

    Where do you go from here? Forward. Loving Hart every step of the way. I wish you all the very best Meghan, truly.

  24. Thank you for sharing your story. It will help others going through the same kind of thing to feel less alone. As you said, Hart is a gift. You will get through this because of your love for him. That will be your strength. And whenever you start to worry that you’re not doing enough or you should have done more, remember that you are the one irreplaceable person in Hart’s life. More than any therapist, doctor, or specialist, your love matters the most in his life. Let it guide you and comfort him always.

  25. Meghan , you have a wonderful, strong , positive personality. You also have alot on your plate right now. I know you will be Harts strength. The love of a mother can work miracles. Take care of you so you can take care of him. Call in all your family and friends to support you when you need it. I am a stranger but have always followed you since the show. Sometimes its easier to talk or vent to a stranger. I am here for you.
    All God’s blessings. Carol

  26. Ah sweet Meghan….you guys have this. It’s gonna be a struggle for all of you, but you are one fierce, strong mama – hugs and prayers!!!

  27. Oh Meghan, you are extraordinary. Your words are pure and beautiful. My heart aches for you, I wish I had words that would make things easier but they just don’t exist. All I can offer you is prayer. You and your beautiful family will be in my daily thoughts and prayers.

    Hart is going to thrive and he’ll go on to do great things. He’ll accomplish things well beyond your wildest expectations. With you at his side, the sky’s the limit.

    Stand strong, lean on those you love as needed. It’s ok. Know that you have an army behind you. You may not see us, but we are there. Always.

  28. There is nothing like a Mother’s intuition. You are an amazing mommy. Keep doing you. Thank you for being so raw. It’s refreshing. Xo

  29. A mother knows. They just know.
    Prayers for good support (doctors, therapists, friends, family, strangers, other kids, other parents). You’ve got this.
    From another mom who just knew.

  30. Your story really touches me. I have been through this with a child. When you see little things and you know something is not right. And you reach out to Drs who tell you your child is fine and you know better. And then jumping through hula hoops to get appts with specialty Drs. And then in the end to find out you were right and have to deal with sad news. My son started with eye issues, that went to other neurological issues to then diagnosed with a severe terminal disease that affects the white matter of the brain as well. He lived 23 years with the disease and I fought for him and was his advocate and voice his whole life. When he passed a part of myself did too. His diagnosis opened the family up to a severe genetic disorder and other family members were diagnosed with the same disease even those symptoms are absent. My other son ended up being diagnosed and later developed symptoms
    and passed as well. My 2. Daughters are carriers but can never develop it. But now they know to do Prenatal Genetic Counseling to test for the disorder in any males fetuses or to do IVF to make sure any boy implanted does not have the disorder. Hart is definitely with the right mommy and daddy to give him the best life he deserves. It’s a hard road and sad but we’re given these special babies for a reason. Much love and hope!

  31. I’m sorry to hear all of this. You are an extremely tough woman and like you said you were chosen to take this on and all of the challenges that comes with it. I am sure you have so much stress with that alone and many other things you are dealing with. I will keep you in my thoughts and prayers

  32. You all are amazing and blessed! Hart will provide
    the bond for all of you and it will be of great strength. The love you and Jim have for each other will be all you need to provide the love that your family needs. Thank you for being so transparent and providing others the strength and encouragement to face their own challenges. All our love and support, The Cracrafts.

  33. Thank you for being vulnerable in sharing this information. Thank you for showing us that even someone on a platform like you are are just as “normal” as we are with our children. My daughter wore a cranial helmet and as soon as we found out about her needing one, I immediately thought about you. You may not realize it, but you sharing these things really helps some of us going through different things in our lives as well. I will keep Hart and your family in my prayers. 💛

  34. Hi Meghan. I love your attitude. You were given a Mom’s sixth sense by God to use and you did. My son was born profoundly deaf 26 years ago. People were afraid to say much and kinda vanished. My lifetime friends were no longer around. As one friend told me, “You need to end your pity party and raise your son. He needs you.” My husband disappeared to avoid working with our son. Doctors told me to send him to live at the state school for the deaf. I, like you, knew God chose me to be his mom so I got busy researching etc. He got a cochlear implant at 4 yrs old, was driven to Dallas weekly for speech lessons with the ONLY cochlear speech therapist and went to many other specialist. It took many villages to raise him. He graduated last year with a BS in Criminal Justice with a 3.0 gpa. He was an intern for his college football team and had two of his players make it in the NFL. His goal is to be a sign interpreter for professional athletes. He is totally verbal and fluent in ASL So, dig in your heels and be strong. God will get you through this. YOU GOT THIS…..

  35. I never reach out to celebrities and this is my first time responding to a post on a blog. I just want to say I admire your strength and your ability to project hope in the most challenging of times. My faith is in God and I truly believe there is always A a plan for us. You have inspired Mothers by sharing your journey. I want to tell you from a woman with similar experiences that you will get through this. I can’t imagine going through this journey in the public eye but you have doing it with the upmost transparency and grace. You are a fighter. Hart, Hays and Aspen are blessed to have you in there corner!

  36. Wow! What a wise, loving and wonderful parent you are! Hart is the luckiest baby boy on the earth!! You are his mother, protector, advocate and you are fulfilling this job to the “nth” degree. God Bless…Lots of Love and Luck. 😘

  37. My nephew was diagnosed with cerebral palsy when he was just over a year old. They were told he would probably not be walk properly, jump, balance and many many other things. His mother didn’t take no for an answer. She took him to all the therapy she could. Fought for what wasn’t offered. Encouraged him. Put him in sports. Pushed him. Her motto was “he is never going to be able to say I didn’t do everything I possibly could. I am so proud of them both. Today my nephew is 24 years old. He graduated high school He attended college. He has his DRIVERS LICENSE!! He is a smart, kind gentle soul. Life has been hard work, and he is tired every single day, but he lives a full, wonderful life. It won’t be easy, but it will be so worth it!!!

  38. I would love to talk to you because my daughter was diagnosed with the same thing at his age. Stay strong! Hugs.

  39. Stay strong Meghan . He is lucky to have you as his mum . Keep fighting for what you believe , only a mum knows . I have had my grandson since he was 13 and his has Aspergers . All special needs kids just need love and what I can see , you have plenty of that for him💙

  40. That was beautiful, all the luck in the world Hart. What a wonderful baby you are and what a wonderful momma you are. He is so lucky to have you behind him next to him and holding him.
    Catches to you all xxxx

  41. I am sorry to hear this! But, I know you will take great care of his needs and do what is best for him. As for the strabismus, you might look into seeing a vision therapist—one that is a FCVOD. My daughter has strabismus, and the pediatric ophthalmologist wanted to
    Surgery—but the vision therapist explained that that had its downsides so we chose to try therapy first. while she is not cured, her eyes are much stronger and the eye turn is hardly noticeable. It is definitely alternate therapy but it was the right option for us! We started it all at 3 and she is now 11 and only sees him once a year.

  42. Meghan you are amazing!!! I loved you on housewives but after reading your story and all you are going through, I just commend you so much on being the strong woman that you are and that your little Hart will need. Try and remain the positive force to be reckoned with you are! Sending so much love to you and your beautiful family 💗

  43. Prayers for you and your family. Mamas know when something is wrong (for lack of a better word) with their babies. I’m glad you insisted!

  44. I’m so sorry, my 1 son has Aspergers not the same but still a handicap even tho most of the time he seems normal but not quite he rarely makes eye contact with people he doesn’t know very well
    it will be ok
    you will get into a routine
    it will get better bless you

  45. I knew with my son too. As a fellow special needs mother, my heart is with you and your Heart. It will be a struggle sometimes but you can and will do it 💜 Special Needs moms are warriors for our babies

  46. Thank you for sharing. I love that you accept your sons diagnosis and see him as a human first. He is not a diagnosis, he is a lovable amazing blessing.
    I teach students with special needs. They are the heart of my life. I never see limitations or special.needs. I see little humans and accept them for who they are and who they were meant to be. You can be an amazing role model for other parents.
    Enjoy your little man for all that he is

  47. His face is very similar to children who have suffered vaccine injuries, the cross eyes, the smile, everything points to stroke which is very common after vaccines. I hope your child recovers but vaccines will only make it worse. Good luck!

  48. This diagnosis is only as limiting as you allow it to be! He is blessed to have a caring mom that is giving him the resources he needs. My husband has cerebral palsy and besides being a little less developed on one side you wouldn’t know it. He is a doctor, he is extremely active and intelligent. You got this 💪

  49. It is sad it’s very sad but I Thank god this little boy has you as a mum. I wish you all a wonderful happy life xxxx

  50. Such a beautiful, heartfelt read. Thank you for sharing. We care, and will be here for your journey…even if it’s just to listen. A mother always’s the gift God entrusted to us women. Love and prayers. You are stronger than any storm.

  51. God bless you. You are a wonderful mother. My daughter has a child with a disability and I have always told her that she was chosen. Like your Hart, he is exceptionally beautiful and loving. Life will have its challenges, but with you as his mom, he is blessed. My daughter also haas 3 other children and they are his biggest cheerleaders and defenders. Godspeed.

  52. Always trust your gut! My youngest, of 5, was also born with many complications and I knew it had to be something else going on. I pushed and sure enough, through genetic testing, he was diagnosed with a rare disorder! Early intervention is key. He’s been in therapy since he was a year old. He’s now 4 and is still non-verbal and has an intellectual mind of a 1 year old, but I thank God everyday he’s alive! I’ve watched you through your Instagram stories and you’re an AMAZING Mommy! Your baby will be fine cause he has you!

    Ps. I also went through a betrayal when I was pregnant with my #4. At that time I had been married for 10 years, and this year we celebrated our 20th Anniversary! Let yourself the time to be angry, sad, and any other emotion you want! If y’all can get through this, make sure he never disrespects you again and if you move forward, make sure to leave the past in the past.

  53. There was a reason Hart chose you to be his mum.
    You have the strength and undying love to support and give him everything he needs, you are all blessed.

  54. I never usually comment on thing like this but feel compelled to say what a beautiful mumma you are and how well you have coveyed what you are going through. As a mum with 2 girls a similar age I understand what you are going through and I wish you all the best all the way from Sydney Australia xx

  55. You and your family are in my thoughts and prayers. My husbands granddaughter was born with it. I taught special needs students and a young girl had it. Her father worked on her upper body strength that she was strong and determined. You have the strength to do this. A mother knows, and I’m so glad you followed you gut. God Bless you and your family!

  56. Wow!!! A mother always knows right?? You are a strong person and I can just tell a wonderful mother. I follow you on insta and you are so all about your children all the time-it’s a joy to watch. Mine are 8 and 9 now and I miss those days when they were so young even though they are physically hardest days of your life-but i would give anything to go back in time and watching your posts just going into wake Apen from her nap everyday brought me back-I so enjoy all of them.
    There is no doubt that you will do everything to get Hart all the resources that are available to him and that he will thrive in spite of this diagnosis. God bless you and your whole family!!

  57. I remember feeling every bit of what you are feeling now. My daughter was diagnosed with PVL after her MRI just before her second birthday. With our diagnosis came the CP diagnosis as well. I didn’t need any of these tests to know that something was very wrong. The fear of the unknowns in her future would consume me at times. It was a long road with so many challenges for us all. As a mother of a special needs child i felt a loneliness in the world since no one could understand what we were going through. I look back now and how far we have come and have no clue how we survived it all. All the therapies, specialist, and surgeries feel daunting to even look back on. I live in south Florida where pediatric care just isn’t abundant as well. My child is now a amazing fifteen year old girl. She has a slight gait abnormality which you could almost not notice. She has a typical IQ but does struggle with school some. When I look back at the “why us” question I know the answer now. I look at how amazing she is doing and I know God have us this special child because we could help her. We were blessed with a beautiful life and the means to help the special soul. This I believe is why your precious boy was blessed with you. You are a strong fierce advocate for him and he will need that for a long time to give him every chance in this world. Today I know part of what makes my daughter such a strong empathetic caring young girl is all of her struggles. They haven’t taken anything from her but have built in her a character that is awe inspiring. I wish you the strength you need as you embark on this journey of love and hope.

  58. God Bless you , & baby Hart . Keep that attitude if Gratitude. You are exactly the Mom he needs.
    In my prayers .

  59. I am so sorry this happened. I am crying reading about Hayes. I will be specially praying for Hayes and your family as he shares same birthday with my premie baby. I pray that every treatment will work for him and God the greatest healer will heal him completely. You are a strong woman to even share this. Remain strong and blessed.

  60. No one knows their baby better than their mom! I’m so impressed you pushed for more tests! Early intervention is so important and YOU made it happen! You are a wonderful mom, Hart is a darling baby boy, and was born into just the right family! I’m praying for your mama heart!

  61. Hi,
    I have two boys with special needs, autism. It’s so hard at the initial diagnosis and trying to get services. But, once you get that ball rolling the routine becomes your new “normal”, I hate that word! You will start to see progress and then you will breathe easier. There will be many more challenges but remember, he is Hart first and diagnosis second. It’s hard to remember that sometimes! Just wanted to say hang in there and big hugs from one special needs family to another.

  62. Wow what incredible perspective! That’s one lucky little boy! You will both be fine❤️

  63. You are simply amazing. You’ve handled yourself and your family with grace and love and I really believe loads of women will take much inspiration from watching you. Thank you for being brave enough to share your journey around the ☀️. Hart’s story reminds me of my own son, who is now 16 and thriving (because of early intervention)!
    And I always knew too. He had speech and language delays (we escaped Autism, but had huge behaviors to deal with) . I am a first grade teacher in Nashville and just had to share.

  64. Meghan,
    Wow you truly are an amazing mother. Sending lots of prayers Hart will be the best he can be. Your 3 babies are absolutely beautiful !🙏🏼❤️🙏🏼❤️🙏🏼❤️🙏🏼

  65. Bless you lady No one knows our babies like we do I just don’t understand how the professionals haven’t figured that out yet You have my love prayers and forever good thoughts I taught special needs for years and you’ve got this Your boy is blessed to have you as his mom ❤️🙏🏻

  66. Wow just wow !! First I am just amazed at your strength !!. You are a wise mama and thank GOD you fought for him so hard . I have a similar story but different diagnosis . My youngest was born profoundly deaf and at 2 months old I just knew something was off . And like you so many denied my concerns . Who wants to be right ??? She has been implanted with cochlear implants and after years of therapy now a 17 year old is doing great . It took me years really to see it as a blessing like you say . I applaud you for being one awesome mama !

  67. Hugs and thank you for sharing! I know this has to be incredibly hard but you are absolutely right when you say Hart is a blessing! God put his trust in both of you to care for this sweet boy and your family will do just that! Always praying for you and your family!

  68. Prayers love and blessings for you. My son is autistic, and I have found such beauty, love and mainly Gods amazing grace in his diagnosis. Having a special needs child is hard and there will be many tears and frustrations…. but I’ve been on this journey with my son for three years and I can hands down say I wouldn’t change it for the world. I know I was chosen by God to be my sons mommy and to hold his hand and help him through it all. But it has also changed me and made me a better person. You’ve got this but if I can give you any advice it is to know that it is ok to be sad, to be mad to feel like this isn’t fair. As a mom and a woman,sometimes we feel like we always have to be strong. But I have found the most beautiful strength in being vulnerable, open and raw. Prayers and love to you on this journey… you’re already an amazing advocate for him and an amazing mom!!

  69. Meghan, having a child with special needs is the greatest gift you could have been given! You will laugh you will cry you will get frustrated. You will ask “why me?” You are correct in saying that God gave you this child because he knew you would be the best person to be his mom!! Hart will teach you true love, patience, understanding, acceptance and soo much more! Thank you for sharing this! It is not an easy road to navigate or talk about but thank you for opening up. Always trust your will never steer you wrong!

  70. You are doing/have done all the right things. I have 2 sons w special needs. They just need to be loved like any other child. It won’t be easy seeing his twin hit all the “normal” milestones first and ahead of time but Hart will hit them, too, and they will be much more meaningful. So glad your heart told you to keep trying to figure out his story.
    He is you son, a brother, a grandson and nephew who is greatly loved. He just happens to have a diagnosis that you can now understand and deal with. Best of luck to you and your handsome little Hart.

  71. You’ve got this! Hart is very lucky he has a mama bear to protect him and so much family support. God bless Hart, you and your family.

  72. I have a 18 month old granddaughter who was born full term and was diagnosed at 8 days old with Chi du chat, a very rare genetic disorder. I just want to say this was not picked up on any ultrasound and my daughter and son in law never expected anything . I take care of her while her parents work and she gets therapy. We have bonded as a family over this and I feel this has brought everyone closer. She is doing far better then what they told us at 8 days old. My message is to keep the faith and always look forward. Let people help you and never focus on the bad things they tell you. These kids are a gift and amazing. Prayers and love to you and you family.

  73. Your a beautiful person Meghan. Hart and all of your children are lucky to have you in their corner.💙💙💙💙💙💙

  74. Meghan, I’m sorry. But I admire your strength and I’m thrilled to see your reference to God. You’re all I’m my prayers!

  75. ABM therapy! Anat Baniel neuromovement therapy! I have a daughter with special needs and this therapy is a God send. Your Cranial-sacral therapist may know of a local one. It is a practice in which the practitioner works to help the brain make new pathways and form new connections in the brain. Anat has a book, “Kids Beyond Limits,” that can tell you all the information you need to know. There is also a podcast. This woman and her practitioners have done incredible things for special needs children.

    Welcome to the club, Megan. From the outside it may be a club that people looks undesirable, but from within the elite walls of this community of special needs parents, I can say that Hart will teach you more than you thought you could know. You are blessed! And so is he for having such an amazing Mom! Best of luck. I can’t wait to follow and celebrate his progress and development with high hopes!

  76. I not only admire your strength & outlook, I applaud it. Your son is very lucky & blessed to have chosen you as his mom & his future is bright with you guiding the way.
    You’re going to be ok! You’re going to persevere, Hart is going to thrive!
    God bless you & I am truly adding you, Hart & all his siblings to my prayers.🙏🏻❤️

  77. Mehgan, i know you will research this condition and will become more versed in all the research than many people. Its your nature to search and therefore conquer.
    My mothers friends daughter had a similar conclusion to her mental and physical development. Rest assured she holds downs a job and lives in her small flat and has many friends. I applaud your determination and your trust in God that we get only what we can handle. God bless you all. Xx

  78. Moms just know, they do. I knew something was wrong with my son, everyone told me he was just a boy, a little slower than girls. I too begged and begged and jumped through hoops until
    Someone would listen, and I was right too. My son has taught me patience I never had, he taught me so many things and I know that his life is a little more difficult but I also know that he is as happy as can be and has more confidence that my other two! You got this ❤️

  79. Love to you and your family! We have a 22 year old son who has always been just a little challenged in his life. I always knew there was something wrong but no one else addressed it. He now struggles with depression and addiction. It is something that effects my life daily. Among all of the things I feel one of them is blessed. This journey humbles me, has given me so much more empathy in my life for others and I see the world differently than a lot of people do. You will too.

  80. I would love to share my story and encouragement with you.
    You are amazing and doing great! And it’s ok to cry too ❤️

  81. Wow, just wow. I have no words but seen you love and ask God to lift you up and give you peace and hope and joy.

  82. As a writer, I appreciate your talent and need to tell you how much more meaningful and important your work is now—as compared to that gig you had in the OC (not that it was without merit). Thank you for sharing your life and struggles and insights and hope with other wives and moms who receive empathy and kinship through your words. You touch and help and heal far more people than you know… prayers for your family and for Hart in particular. ❤️

  83. Wow. Mothers always know! You are a very strong and pro active mother. Hart is blessed to have such a strong backing. Thank you for sharing such a personal family issue. Love seeing these little boys do something new everyday! They make you smile and they have a beautiful big sister who will always be there for him. Love to you and your family. Stay strong!

  84. I commend you for following your motherly instincts. Doctors often think we as mother are just looking for a reason to complain or get attention and don’t understand that you’re motherly intuition is far grater than that of a doctor.. now you’re son can will get the help he needs because of you.. you are strong and God will guide you along in your journey never loose faith or give up.. you are an inspiration to a lot of moms going through similar struggles ..

  85. Meghan, God bless you and your beautiful and precious Hart, and the rest of your family! I’ve been following you on Instagram and have been enjoying your posts about your little ones, not knowing your difficult path. I’m so much more in awe about how you handle the toughness of life. Taking care of Hart will be, I’m sure, a difficult path, but Hart couldn’t have landed in any other better and more loving family and with any other mother more caring, loving, committed and smart than you! May God be with you, Hart and everyone in the Edmonds family🙏🏻 You’ve got this👍🏻💙

  86. Meghan, You are an amazing Mother. You knew in your gut and pushed for the tests to get the diagnosis. Hart is a blessing 💙 Now it is about giving him all the tools to live his best life. Just like you will do for Aspen, Hayes and your “step” children. You got this Mama so does Hayes. He will amaze you ❤️

  87. This was such an emotional blog for me as it hit home with one of my kids. A mother knows when something isn’t right. God bless you and your family! You’re an amazing mom!

  88. I have been through many trials and tribulations. Through on of the trials, I read a quote and I read it in my office everyday. “You never know how strong you are, until strong is the only option you have”. God Bless all of you.
    P.S. Hart will be just fine. He has you as a mom.

  89. Good for you for trusting your instincts, you are going to need to so the same moving forward. My son, now 20, was diagnosed with a rare genetic disorder at 8 weeks. I insisted on seeing a geneticist when my pediatrician kept saying nothing was wrong. The geneticist diagnosed him immediately and was worried I would be devastated at the news. It was not what I wanted to hear but I was glad he confirmed what I had been seeing. From that point on I becamy my sons advocate. I read everything I could and I learned not to trust every Dr. The ones who act like they know everything don’t and the ones who are willing to work with you and respect your instinct are a God send. My geneticist was wonderful and always encouraged me to learn more and fight for my son. You’ve got this!

  90. Megan … my best advice is find the best of the best for your early intervention ( PT OT etc) the county intervention is great but they cannot offer enough hours of therapy. Get your own and get him to therapy many times a week. We set up our basement like a therapy room and did all the therapy everyday. You can rewire these little brains … it is essential you dig in the first three years ! There is an amazing nutritionist who deals with children and issues that are not common … KELLY DORFMAN! You can do appointments on the phone. A friend of mine has two boys with CP and the docs could not believe how they were improving so quickly … she said “ I am feeding their brain with supplements they need and it was giving them that boost their body needed to get the therapy to be even more effective “

  91. Welcome to special needs parenting a group you never wanted to join. Already pushing for your child is a hallmark. First steps are good then at 3 transition to ur school district. I adopted my daughter w fetal alcohol syndrome. I suggest getting into Facebook groups of kids w special needs. There is a St. Louis group and they have get togethers. You learn the most from other moms. Have agencies in St. Louis for kids like TASK as he gets older. We rock the spectrum is a special needs gym. Advocate for your child. Could see about a developmental pediatrician as well.

  92. Meghan your such an amazing mother! Praying for Baby Hart, you, Jimmy and the rest of the gang! God has a plan!

  93. Meghan… your words touch my heart in more ways you could ever know!! I’m sure you’ll never read my comment. First my marriage experienced the same thing 90days in and my heart HURT so bad for you then and now I have a child and she has some difficulties and it took so long by myself to get a correct diagnosis. 3 years later where are still at children’s hospital back and forth. Love can be challenging but I believe God gave us special babies that takes special parents and love. I wish I could sit down and chat we have so much in common. God bless you, your sweet babies and your marriage ❤️

  94. You are amazing. Your children are so blessed to have you. Prayers as you continue to advocate for your son.

  95. I follow your IG page and I just want to commend you on your class, Grace, and resilience. All that has happened to you is occurring for a reason!! God knows your inner and outer strength and you will get the reward for all of your pain and sorrow! Despite the pain and grief that you maybe experiencing you still have your trust and faith in God and you are victorious, you are a winner, and your family will be blessed no matter what!! Keep striving, keep believing, and keep trusting!! You are amazing!! You rock Meghan!!

  96. This is beautifully written I hope you inspire other families to go get the assistance they need.

  97. Meghan,

    Wow they courage you showed is one that deserves to be praised! You have exceeded as a mother and followed you mommy instincts. I am an early interventionist and beg parents to follow their guts on a daily! Getting him into early intervention is he best thing you can do for him. So many parents miss the opportunity to get these services. This disability is just a disability and does not define who he is and what he can obtain. I’ve seen kids who only were supposed to live a week work hard and are thriving in school. I’ve seen kids who are never supposed to walk take steps. I’ve seen kids who are never supposed to speak sing their first song! This is just the beginning of his amazing journey and he needs strong parents like you to tell him it’s okay along the way.

  98. Hi. My son was diagnosed with PVL 4 weeks after he was born. He had a brain hemorrhage due to his premature birth which caused the PVL. As a mother, I too knew that there was something not right while he was still in NICU and I looked at his chart and read that he had PVL. When I confronted the Dr’s about this diagnosis, they told me he would have an abnormal gait and they couldn’t tell me anything more than that. A few days later I met with a neurologist and she told me my son had Cerebral Palsy.
    That diagnosis knocked me for a loop, but I wasn’t going to sit back and do nothing. Spencer started therapy at 8 weeks and we never looked back. Spencer is now 34- Spencer does not walk, but that hasn’t stopped him from living on his own…having a great life- being a public speaker and discussing what it’s like living with a disability. Spencer is very smart and verbally not compromised and is a joy to have as a son. Hart does not seem to be as involved as Spencer- he sounds as if he has the type of CP that only affects one side- which will not really affect his walking . Will Hart need lots of therapy as he gets older…yes, but you are already on the right path with that…if you need someone to talk to, I’m here to help or listen…I’ve walked in your shoes and know that the journey ahead can be unknown…but you are strong and you won’t let anything stand in the way of your children succeeding in their lives!

  99. Just a complete stranger here, praying for your sweet Hart. Thank you for sharing, ❤ Heather

  100. You are truly AMAZING and INSPIRING. Whenever I doubt my strength as a woman, I feel blessed to have women like you who show what light can come. 🙌🏻💪🏻💓

  101. Dear Meghan,

    I’m sure you’re getting bombarded with all kinds of advice and comments. You seem to have a really good head on your shoulders so your kids are super lucky about that! We have an 11 year old daughter who has had coordination problems with her speech and movement. We were told when she was a toddler that she may live in a hospital. She did all of that home therapy. But there were features of it that held her back in access to other kids. I’m so glad that Hart has siblings. This is wonderful for him for sure! The only advice I would give you is don’t listen to anyone who wants to put limits on your expectations for Hart. Our daughter is today doing an intensive ballet summer program here in NYC. I had to find programs and outside music teachers who didn’t attach a stigma to her. Unfortunately, other parents and even friends can be a nightmare about letting you know that they are scared of your situation. Teachers may do this too, unfortunately. You are super positive and resilient and you may have to look to yourself for inspiration…

    Dance and music have been the absolute best in many different ways. You are a great super busy mom and you will need some time for yourself occasionally too to keep your cup half full.

    Just have the quote from Churchill in the back of your mind: Never, never, never give up. That is what will give you peace that you did everything you possibly could to give Hart the best start in life!

    My best, Alicia

  102. I’m sure that this will be a challenging road ahead, not only for you both as parents but for Hart as well but your positive attitude and love for your child is what will get you all through this. Good for you for sharing this information about your beautiful boy with the world; for being so proactive and for advocating for your child; and for loving him as he is. We need more people like you!

  103. Meghan, you are amazing and I believe he was a gift also! I, too, have a child who has a disability (schizophrenia), knew he was different as a baby/toddler, fought and fought for services for him but because his brain hadn’t “snapped” yet, for lack of a better term, I was met with brick walls at every turn. He is now 24, navigating college and life a bit later than most, but healthy and treated and we could not be closer. I, too, believe he is a gift and was given to me for a beautiful reason and will advocate and care for him until my last breath! Peace, happiness and health to you and your beautiful family 💕❤️

  104. You are your child’s biggest advocate! I encourage you to continue to be proactive and to continue remaining positive. I also encourage you to turn to God when you feel discouraged.

  105. Thinking of you during this time, I can completely understand how you must feel and I believe your perseverance in getting the diagnosis is exactly what your Son needs in a Mother having a diagnosis like this. Don’t treat him too different and possibly he will grow up to live a relatively normal life, a very happy one as well. I have MS, for the most part you cannot tell but I do know it was difficult for my parents. That being said, when they were sad about it – it made me feel more of a failure to them.

  106. A friend sent me this and I’ll be praying for y’all and Hart. We are in situation similar with my almost 4 month old. Very similar. Her diagnosis is congenital toxoplasmosis which caused some insult in pregnancy as well. Prayers for y’all as you navigate your way through all of this. We are doing the same. I know God chose us for my daughter, Demi and her for us, as well

  107. I am often asked to describe the experience of raising a child with a disability – to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It’s like this……
    When you’re going to have a baby, it’s like planning a fabulous vacation trip – to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It’s all very exciting.
    After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, “Welcome to Holland.”
    “Holland?!?” you say. “What do you mean Holland?? I signed up for Italy! I’m supposed to be in Italy. All my life I’ve dreamed of going to Italy.”
    But there’s been a change in the flight plan. They’ve landed in Holland and there you must stay.
    The important thing is that they haven’t taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It’s just a different place.
    So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.
    It’s just a different place. It’s slower-paced than Italy, less flashy than Italy. But after you’ve been there for a while and you catch your breath, you look around…. and you begin to notice that Holland has windmills….and Holland has tulips. Holland even has Rembrandts.
    But everyone you know is busy coming and going from Italy… and they’re all bragging about what a wonderful time they had there. And for the rest of your life, you will say “Yes, that’s where I was supposed to go. That’s what I had planned.”
    And the pain of that will never, ever, ever, ever go away… because the loss of that dream is a very very significant loss.
    But… if you spend your life mourning the fact that you didn’t get to Italy, you may never be free to enjoy the very special, the very lovely things … about Holland.

  108. Your blog was so powerful! Thank you for sharing! You have such strength. I’m sending you and your family positive thoughts and prayers. Good luck with everything!

  109. A mom always knows. I have a six year old son and we are having him checked for sensory processing disorder and for High processing Autism but it has not been easy to have him seen because he is smart or he doesn’t fall in to all the boxes but as a mom you just know when there is something not quite right. I have been working for over 3 year to try and get him seen by someone they would tell me it’s ok he will grow out of it and now that he hasn’t they are starting to help. Just keep pushing through because most the time a mothers intuition is right.

    ~Nicole Lemos ~

  110. I applaud you for sharing your story. I have no doubt you will tackle all of what is given to you, some days maybe darker than others, but you and your family will come through stronger.

  111. Welcome to Holland
    by Emily Perl Kingsley

    I am often asked to describe the experience of raising a child with a disability – to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It’s like this…… When you’re going to have a baby, it’s like planning a fabulous vacation trip – to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It’s all very exciting.

    After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, “Welcome to Holland.” “Holland?!?” you say. “What do you mean Holland?? I signed up for Italy! I’m supposed to be in Italy. All my life I’ve dreamed of going to Italy.” But there’s been a change in the flight plan. They’ve landed in Holland and there you must stay.

    The important thing is that they haven’t taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It’s just a different place.

    So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

    It’s just a different place. It’s slower-paced than Italy, less flashy than Italy. But after you’ve been there for a while and you catch your breath, you look around…. and you begin to notice that Holland has windmills….and Holland has tulips. Holland even has Rembrandts.

    But everyone you know is busy coming and going from Italy… and they’re all bragging about what a wonderful time they had there. And for the rest of your life, you will say “Yes, that’s where I was supposed to go. That’s what I had planned.”

    And the pain of that will never, ever, ever, ever go away… because the loss of that dream is a very very significant loss.

    But… if you spend your life mourning the fact that you didn’t get to Italy, you may never be free to enjoy the very special, the very lovely things … about Holland.

  112. You are doing all the right things. I am a pediatric Occupational Therapist who works with children with similar issues. Early intervention and therapy is so important. It is also important to be his voice and push for what he needs. You have the right outlook-be positive and know that he is a blessing and will teach you so much as he grows. Have faith and find a good pediatric team of therapists and doctors to support you. I would also recommend looking for a developmental pediatrician and a pediatric physiatrist to follow him as they specialize in working with children with specialized needs. Sending you strength and good energy on your journey.

  113. My son was diagnosed at 17 months old with CP as a result of 2 strokes in utero. I carried to 39 weeks and nothing came up in any of his scans before or after birth either. His CP affects mobility on the entire right side of his body, chewing, balance, speech, core support and day to day functionality. He favors his left side, it’s almost as if from birth his brain doesnt recognize that he has a right side. He is now 6 and is learning to dress himself, has learned through copious amounts of private physio, aquatic physio, massage etc to swim on his own, is fully potty trained and continues therapy 3x a week. There is hope, always and so much joy in these achievements, not only for him but also for you as a mom.

  114. Your such a good Mom!!! God knew you were the one that would fight for your child. Jesus is walking right beside you. Your going to be amazed by the work God does through your little Hart ( how fitting his name is ❤️) sending love and prayers your way sweet girl.❤️🙏

  115. I Have always always been impressed with your calm and wisdom. You were the voice of reason on that reality show and it is so evident now. I am truly sorry as a momma that this is your new normal but I feel proud of you and I know that you are more than uo for what lies ahead. I wish you love light and lots of strength. Big hugs sweet girl to you and your beautiful family💗

  116. I have found a new love and respect for u. Your words have given me straight to continue my fight with my son. You are right we were chosen because God knows we can do this. My prayers for u and your baby.

  117. Was he born second? So many twins born second have cerebral palsy. Very rarely a first born. My daughter has autism and she is a true blessing in our life. Everything I was afraid of has become what we love about her.

  118. Why did you have to call Jimmy if you just said you were sitting at the table with him at the doctors office and he got you a coke?? Stop trying to get people to believe your trash marriage isn’t a sham. You got played and you’re so vapid and pathetic that you are staying, so stop trying to make us think your husband cares at all about you. He doesn’t.

  119. You are one of the strongest women I have ever known. (We have not met but I have been a Instagram follower & first saw you in Real housewives OC) You were AWESOME on there, truly amazing, honest & REAL. You can do anything & you are so unbelievably strong with everything you have been through. I will continue to follow your journey with Hart (and Aspen & Hayes) but will keep all of you in my daily prayers.

  120. Megan, your awesome and Hart is one lucky little dude! Jesus has plans for him, trust in Him and he will lead you both to amazing things!

  121. Oh my dear, I’m so sorry to read this. But you’re right, you’ve been given the challenge to raise a human with stronger needs than others. Give him your all, he looks like one sweet lil’ dude.

    When you’re ready to address the infidelity, I I
    Highly recommend looking up Dr. Tammy Nelson and her books, and podcast. She is AMAZING!!!!!!!!! She really (among other things) helped me to understand what infidelity, monogamy, and deeper levels of cheating really means.
    I wish you all the best! The spotlight looks rough, but you’re handling it with grace.

  122. Thank you for sharing your story. I work for an early intervention program in Virginia and have worked with little ones with PVI. You are a strong and smart mama! He will do great with therapy! You will celebrate every new milestone with even more excitement!

  123. Prayers heading your way and yes we r given things to teach and they make us stronger from someone who Very ill dealing with rare stuff on top of ms and stiff person syndrome and bone marrow breakdown due to my father serving in. Vietnam it was passed down I get infusion every other week to try and keep me alive Always fight and listen to ur instincts or I wouldn’t have gotten answers…. I miss u ok the show but I know it’s hard to see ur kids suffer as I’ve had to also but have Faith and Hope and Miracles as they help soo much- hugs to all of you!

  124. My son has PVL and experiences the same things as your son. He was also born at 37 weeks and he is 6 years old now. Take time to process the diagnosis but don’t focus only on that. He will amaze you in ways you never thought possible and teach you more about yourself as a mother than you know. It took a while for me to get past the diagnosis and focus on who he is not what he has. It helped talking to other parents who have walked the path before me and could point me in the direction of good resources and therapies. I wish you and your son the best.

  125. Yes you are Blessed, I’m very happy for Hart because he has a strong and wonderful Mommy. Reading your story and all the other comments I really don’t understand why we have to struggle to get an appointment for something so important “Health” in my case I have more then a month waiting for an appointment after filling so much paperwork to get my son tested and evaluated for Autism… it just don’t make sense…
    God will give you and your family the strength to help Hart all the way.

  126. I have always been a firm believer that God gives you, what you can handle. Hart was given to you for a reason. Love him and NEVER stop fighting for him.

  127. I am so sorry your going through this! My son, 13 months old was just diagnosed this exact same thing July 1st! I know just how you feel. He was not premature either and has had complications since the day he was born, one being on oxygen support all the time until he was 11 months, now just while he sleeps. He also has a developmental delay but not bad enough that first steps would accept him either! I’m happy you were able to get what you needed to get your son help!

    Thank you for posting this, it made me feel not alone about having a child with this. You could not have said it any better about what we are going through. Prayers for your family ❤️

  128. Girl… im praying for you and your family. You are such a beautiful and strong person inside and out. Yes… you and your husband were chosen by God to take care of Hart.

  129. Meghan, your Hart is a blessing. He is Blessed to have you as his mommy. You fight for him , love him and nurture him. You are your children’s hero, fighter. Only a mom knows what is best for her children. Hart will be ok and so will you. God bless you all.

  130. I feel horrible for you. I feel your pain. I am the mother of triplets and one has a diagnosis of PVL and minor CP. my triplets are now almost 19 urs old. My daughter with PVL and CP is a rockstar. We were fortunate enough to get the diagnosis while the kids were still in NICU. We were initially told to expect that she would have spastic diplegia and would probably never walk. She walks on her tip toes. Initially that was a physical condition that’s common with CP. with physical therapy and braces at night she gained the flexibility to walk flat but she prefers to walk on her toes. We had her in occupational therapy and speech therapy when she was in elementary school. There were times that it was evident that her brain functioned differently. One time she couldn’t remember how to take off the skort I had just helped put on her so she could go to the restroom. Another tome she didn’t know how to turn a light on in the house we had lived in for several years. She along with one of the other triplets was diagnosed with visual motor processing issues. With therapies, and tutoring both graduated with honors and just completed their first year of college. My daughter gets testing accommodations (ie more time, no scantrons) that aid is net success. I think what I have learned is that doctors are not always completely right about the outcome. The human brain is resilient. Hard work and live can yield amazing results. One thing I found challenging was getting assistance from the elementary school. When you have a child that looks normal and acts normal it is hard for people to recognize the struggle regardless of what the data says. Stay strong. This will be an often sad journey but it can have a wonderful ending.

  131. As a mom of preemie twin boys only one of who survived and he has gone on to have major delays and was diagnosed with basically, brain damage at Mayo, I want to say I love you. You’re Baby boy is a blessing! He and his family will be stronger for the challenges. And God is calling you closer to him right now. He’s asking you to lean on him and to run to him with your heart. Run to him for your son and yourself and your other children! Let him be your strength during this time of uncertainty and fear. The Lord is with you as you walk through the deep waters. He will not forsake those who run to him for help. With all my love!!!! ❤️❤️ Some practical advice here: I got my little boy into a special school instead of wasting my time in the public school system with an IEP. We tried it and 2 hours and 45 minutes a day wasn’t enough. We enrolled him in a special preschool where he gets one-on-one therapy 6 hours a day 5 days a week and he is blossoming!

  132. Welcome To Holland — by Emily Perl Kingsley.
    When you’re going to have a baby, it’s like you’re planning a vacation to Italy. You’re all excited. You get
    a whole bunch of guidebooks, you learn a few phrases so you can get around, and then it comes time to
    pack your bags and head for the airport.
    Only when you land, the stewardess says, ‘WELCOME TO HOLLAND.”
    You look at one another in disbelief and shock, saying, “HOLLAND? WHAT ARE YOU TALKING ABOUT?
    But they explain that there’s been a change of plan, that you’ve landed in Holland and there you must
    But stay you do. You go out and buy some new guidebooks, you learn some new phrases, and you meet
    people you never knew existed. The important thing is that you are not in a bad place filled with despair.
    You’re simply in a different place than you had planned. It’s slower paced than Italy, less flashy than
    Italy, but after you’ve been there a little while and you have a chance to catch your breath, you begin to
    discover that Holland has windmills. Holland has tulips. Holland has Rembrandts.
    But everyone else you know is busy coming and going from Italy. They’re all bragging about what a great
    time they had there, and for the rest of your life, you’ll say, “YES, THAT’S WHAT I HAD PLANNED.”
    The pain of that will never go away. You have to accept that pain, because the loss of that dream, the
    loss of that plan, is a very, very significant loss. But if you spend your life mourning the fact that you didn’t get to go to Italy, you will never be free to enjoy the very special, the very lovely things about

  133. Meghan,
    I can do relate to you! Our son is 22 now & we have had challenges also all of his life🙏🏼
    I would love to give you details but I know how crazy your life is & the challenge of taking care of Gods blessings!
    What I CAN tell, encourage, pour into you as a 55 year old mother with this challenge all my sons life is…..
    it took me a while after all the hurt, disappointment, depression to FINALLY realize like you said..,.
    The Lord knew who he was giving Hart to & why & even when you question why?
    Just always know to ask the Lord, trust in him & pray for your DAILY GRACE, MERCY, PATIENCE 🙏🏼
    If you ever need lifted, encouraged, prayer please email.
    NOBODY will ever understand what your going through unless your walking in someone’s similar footsteps!
    Many blessings & prayer for your family & Hart through this journey 💗

  134. Hart is right where he is suppose to be. God gave you this special, precious gift because he knew you would live, cherish and be the warrior for your angel that he will need. I could go on and on but, as you knew, I know, that anything I would say about this blessing in your life you already know. I will hold you and your family in my prayers and follow you thru this journey that God has blessed you with. Stay strong and faithful. Much love.

  135. Hello Meghan,

    I so understand what you are going through. I have twin 2.5 yr old boys. Our little Carson was diagnosed with severed ASD. I am also blessed to be his mama and honestly couldn’t imagine him any other way. I love him with his autism. It’s what makes him, him! Still it is challenging not knowing what his future look like.

    You have been through so much! Just know that you are a wonderful momma and will be Harts warrior, fighting for him all the way.

  136. Hang in there and challenge your warrior strength! You will find resolve & reserves you never thought you had. Your son is lucky to have a mom that is such a fierce advocate. You got this! 💪🏻❤️

  137. Meghan, I will keep you, your beautiful Hart and your whole family in my prayers. I agree with all you said and yes, God is with you and entrusted this little one to you to love, care for and grow with. You are really a special and loving human being 💜

  138. Your story gives me goose bumps as I have gone through a similar experience this year. My newborn was recently diagnosed with a genetic disease, but I knew from the moment they handed him to me. I love him just like my other children, but I knew something about him was different. You start to feel crazy when people—doctors—keep telling you your child is fine when you know in your soul it’s not the case. Mine only went on a few months, so I can’t fathom your journey of over a year to get answers. I’m glad Hart has a mama who has already fought for him and will his whole life.

  139. What a great attitude you have. So mature, so spiritual, so gracious. Gave me chills to read. You are heeding to the call of a wise and truly loving mother and woman.

  140. My 18 yr old son was born at 33 weeks. I noticed by 2 mos of age that he was not meeting milestones. The pediatrician blew me off until he was 6 mos, saying I needed to adjust for his prematurity. He was more behind than even adjusting his age by 7 weeks accounted for. He began PT with Early Intervention at 6 mos, with a vague diagnosis of ‘hypotonia’ … low all over muscle tone. He had genetic testing and an MRI at 8 mos (all normal). At 18 mos we added speech therapy. At age 3 he began Occupational Therapy. It was around that age we began to suspect autism. What I remember from this time was FEAR. Those fears ranged from would he ever walk? Would he go to regular school? Would he ever be able to work and support himself independently? A constant loop of FEAR in my head.

    He has now just graduated high school summa cum laude. He drives, and danced with a lovely girl at Prom this year. He is a decent violin player and also just accompanied his high school rockets team to launch their year-long project, an 800 lb rocket, at White Sands Missile Range. He was awarded several scholarships and is registered for community college this Fall. He plans to be a computer engineer. The doctor does think he is on the autism spectrum, but he seems to be on the more mildly affected end. Think Sheldon in Big Bang Theory and that’s my son.

    My point is.. his prognosis looked so very scary as an infant an young child. At age 3, he was a year-plus behind in all areas of development, including cognitive.. and that scared me the most.

    It’s so hard but time and therapy … lots and lots of therapy.. will hopefully bring your son to his fullest potential. I just read that PVL can affect people in ways ranging from mild to severe. My hope for your family is of course that your son will thrive.

  141. Bless you and your sweet beautiful little boy! Thank goodness you are an awesome mom and kept fighting for him. God and prayer are a powerful duo and y’all will be in my prayers. Keep your head up and keep fighting for those babies. You all have a whole group of people praying for you.

  142. Hi Meghan! You obviously don’t know me, but I have watched the show some and came across your blog today. I wanted to encourage you as you begin the journey into “special needs”. My daughter had a stroke at birth and has significant brain damage as a result. She was diagnosed with CP and epilepsy early on. She is about to turn ten now. She DANCED in her first recital this May, and we are so proud. Yes that she can do it, but mostly that she has the confidence to do it! Her life looks way different than I ever planned and often i still grieve for the sufferings she has to endure, but we have met the best people along the way. You will find that you will learn so much about the grace of people who loved your child before he was born. People that chose to devote their lives to helping him and children like him.

    A few lessons I have learned:
    1. Grieve. Allow yourself too and then look at how awesome he is. He is the same little boy you were given to love: just with a new path.

    2. Support. Find a network of trustworthy supports. You can’t do it alone, and that’s ok. I am a part of a Mamas of Special Needs Kids called “Divas”. We share doctor’s, therapists, and strategies with one another. Sometime we go out and have a drink, and not talk about any of it. I had to have brain surgery a few years back and they were so supportive. Me people picked up my lack. It was awesome.

    3. No pressure. There is no pressure to “fix-it” or to do therapy one way. We have tried to do everything we can to help—obviously—but finances (not your problem 😀 but it is mine—I mean that in the best way!), memories, and YOUR health are important too. You can’t pour from and empty cup.

    4. I am a Christian—so without Jesus, my perspective would be different and I am sure I would struggle more, but I know one day she will be healed completely. Until then, we DO regularly see glimpses of healing right now.

    5. Don’t give up! I am not trying to force my opinions on you or my faith, but I always feel the responsibility to encourage new special needs Mamas. You are now a part of a tribe of people with a tremendous amount of grit, determination, and love. You are already an advocate for all of your children and they are blessed to have you. My hearts knows what mountains you are facing, but I know you will conquer them all. Blessings to the whole crew.

  143. This may be little consolation but I’d like to share my story in the hope that it’s helpful. I was born at 6.5 months in Peru.. I had a tippy toe walk, hip problems, stiffness in my legs, crossed my eyes, bad vision in one eye, etc. Doctors did not diagnose CP. My symptoms where treated with surgeries. I grew up not knowing that I had anything really wrong with me. My parents, friends never treated as if I had a disability. So I grew up playing sports in high school and some in college. Later, I ran a marathon. When I was 54, I had limb lengthening surgery to correct a one and a half inch length difference. During recovery and physical therapy, balance, leg strength and spasticity did not improve, and I was finally sent to a neurologist for a brain MRI. At 56, I was finally diagnosed with CP from birth after finding brain lesions and reviewing my history. Getting this diagnosis was a relief. I now compete in triathlons and I am in training to qualify for the USA paratriathlon nationals and team USA. No one ever told me that I can’t, that I shouldn’t. The obvious disability that I had was ignored and I was treated like every other athlete. The sky is still the limit for your son.

  144. Prayers and hugs for you and your beautiful family. He is a lucky boy to be given to you and you are blessed to be chosen to guide him through this life. You are an amazing mother and person of strength. I hope whatever the path you are able to keep your family together.

  145. A Mother always knows when something isn’t happening like it should with their baby. Reading your story was like hearing my own with my son who has Autism. God bless you and your family.

  146. I’ve been a follower and curiously watched as you got married and went forward with your pregnancies- always holding my breath. I was always fearful for your marriage- just a mother’s intuition, or that editing gave that impression. What you just wrote, Meghan- about being blessed! YOU are Mother of the year! You were chosen! I 100% agree, for some reason you were blessed to be Hart’s mommy! You will get through this- see yourself as a whole without Jimmy. You have these 3 beautiful children that will offer you love and teachings each and every day that will show you that YOU are all that you need. You deserve someone that will love you as fiercely as you love those babies! Each and every day- and be grateful that they get to love you!

  147. reading this brought so many emotions. My son was shaken by his dad and has brain damage because of this. I came home from my first day back at work from maternity leave and I just knew something was up with him and that’s when I took him to the ER. There they found a brain bleed caused by shaken baby syndrome. My son is developmentally delayed, signs of CP, has seizures, has a VP shunt, has had several hospitalizations, CT scans, MRIs, Every possible test I feel like. Most of the time I am depressed, feelings of guilt, blame, I hate myself for letting my son go through this and then I start to compare my son to others his age. It’s all a struggle. You’re right though, one foot in front of the other. I don’t have a support system, my parents blame me, my friends have left and judged me and most of the time I feel like they’re tired of hearing me. I have no one but my son and that’s all I need. There are time I drive home from work (I’m an RN) and already stressed and feel like giving up on life entirely and then I get home and see my baby and it’s all better. God chose me to be his mom and for that I have to be the strongest I can ever imagine because at times yes I have thought about just calling it quits on everything.

  148. Dear Meghan,
    I was sincerely touched by your Instagram post about your son Hart’s recent diagnosis. I’ve never reached out to comment to others unless they are personally known to me but for some reason I felt compelled to contact you. First, I applaud you for sharing such a personal situation with others. By sharing you allow others to become aware of life’s challenges and yes, blessings. Second, good for you for being you and your son’s advocate in a world where others are so easily dismissive. The fact that you did not accept what some professionals had told you because your mother’s heart knew deep down that something was going on, that he needed attention, is remarkable! And thirdly, your unbelievably positive attitude in less than ideal circumstances will see you through whatever upsets occur! Please don’t allow for anyone to tell you any differently. 💕

  149. My son also has cerebral palsy. The diagnosis was hard but then it was also a relief to know how to treat it! Having my son with CP is a blessing and it means u get to celebrate each milestone even more because you know how hard he fights to get there! Asher is now 6 and is doing great with his therapies and he recently had a Dorsal rhizotomy to lessen his spasticity! Praying for u and your family

  150. As a mother or premier twins that had health complications, I completely understand you. Mine are now 20, each have grown in different ways had their struggles but each have found their own ways. Bless you my thoughts are with you and your family – you got this.

  151. You and your family especially your baby are in my thoughts and prayers always. God bless you for your attitude.

  152. Just beautifully written. I admire you greatly for your courage, strength and attitude. Blessings to you.

  153. Prayers for you and your sweet, beautiful family. Prayers for all you are going through. As a special education teacher and sister to a my brother with special needs, there will be challenges and yes, life will look different than you may have expected but it will be amazingly beautiful! As someone who is a cancer fighter, this has been my favorite quote, my mantra, something that provides me comfort and hope and peace. Hugs!

    Life is amazing. And then it’s awful. And then it’s amazing again. And in between the amazing and awful it’s ordinary and mundane and routine. Breathe in the amazing, hold on through the awful, and relax and exhale during the ordinary. That’s just living heartbreaking, soul-healing, amazing, awful, ordinary life. And it’s breathtakingly beautiful.
    L.R. Knost

  154. As a mom with a toddler and 6 month old, this really moved me. My heart is with you during this time. You are an incredible person and and amazing mama. Hart is so lucky to have you as his mommy. Praying for you and your family <3

  155. WOW! First, blessings for your beautiful son, Hart! Second, blessings for you as a family going on this journey with him. You are an extremely strong woman and I have no doubt that, “YOU GOT THIS!” I am intrigued to read future blog posts on your precious, Hart! You have a ton of love & support, never forget that along this journey. Know that it is okay to vent, cry, smile, be angry etc…. IT IS OKAY! My prayers & love will continue!

  156. My son doesn’t have « any special need » as they say. He has a food allergy which is « nothing » compare to a « special need ». However, I did feel guilty (what have I eaten or not while pregnant, what did I do wrong?). We all have that « mommy guilt ». Then I found out about this « treatment » that allows him to be « tolerant » to his allergen… not available near home… but we flew once a month for a year to treat him and now he is « ok » and may eat every piece of cake, candy, etc he wants 😉 at some point I came to peace but his allergy and reminded myself what I told him the very second I saw him: I promised him to always provide him with anything he could need and I’d fight for it. Well, I fought, found that amazing doctor, squeezed the budget to make it happen…. and then I totally agree with you: you were chosen to be his mom because you could fight for him and « make it happen ». May you always find the strength you need, allow yourself to be sad sometimes… your son is one lucky kid to have a « supermom ».

  157. I am a mother of a child who is highly impacted by special needs. He was diagnosed at 15 months. He is now four and I have found a support group at my church for moms of special needs. I encourage you to join a support group. We are a very select group with similar experiences. This is REALLY fresh for you and you will settle into this new role. Prayers for all the newly diagnosed kids and their moms.

  158. Randomly stumbled on your platform scrolling Instagram. Born and raised in orange county, living in this bubble of comfort. My second daughter was born with CHD and my world has been different ever since. It was undiagnosed until two hours after birth. Sometimes it’s still hard to reconcile life before and after this shift. She turned one on 7/3 and despite her chronic conditions she’s thriving. Prayers for your son and your family. You have an new fan routing for you.

  159. We just went through this was our son at 18 months when he wasn’t walking. Everyone said he was fine. Doctor after doctor and two neurologists. Had the MRI as well. Came back fine but his symptoms are the same as Hart’s. Favors one side, rigid muscle, etc. no explanation as to why.

    We are thinking of you and just know there are two parents and one little boy, Maverick, who is going through the same thing. Thoughts and hugs to you ❤️

  160. Hart is in my prayers! My daughter just had twins girls in June. They were born at 35 weeks both weighing 4lbs and 10 oz. They didn’t have to spend one night in the NICU. Yes, we are blessed, however, because of they were preemies I do worry!! May God guide you through this difficult and beautiful journey! God bless!

  161. I have twin boys also. They weren’t very preemie or anything and our story is a lot like yours. I knew something was different about one of them. They are 29 years old now. One is completely typical and the other has CP with the same PVL condition. He also has several other related conditions and is highly disabled. I also have a daughter ( she’s younger though). As an “experienced” mom (not gonna say older!) I will tell you some days are wonderful and some will be hell, but that’s ok. Just keep going and be confident in yourself and always remember Hart is a kid first! Treat him as you have with love only a mom can give. We have found over the years our other 2 kids have grown into very compassionate people by having their special brother, often with understanding others cannot know. You will all become super advocates for him and Hart too will be blessed from your family. — my special son was on a baseball team and his twin brother was his “buddy” helper! It’s overwhelming but it gets easier. ❤️

  162. You, my dear.. are a bad ass. And I have much respect for you.
    I will pray for a good team of people to work with. And for wisdom for you and your husband.
    God is so big, like you know, and this didn’t surprise him. He knew you would be an amazing momma to Hart.

    God bless you on this journey.

  163. If it manifests as cerebral palsy, depending how severe, please note that most cerebral palsy people are as intelligent as anyone else, but their bodies suffer spasticity. I have CP, I have earned an MA, led a full life and am married with children. I had a lot of surgeries as a child of the 70’s that will not be performed on your son, because they know better now. Keep doing the cranial sacral and chiropractic.. Expect good things for him and of him. Many blessings as you navigate the coming few years. I am hoping the best for Hart. Unfortunately, the waiting to see how this all affects him is the hardest. But you are a courageous and fierce mama, and will help him create his best life.

  164. You’re right, you do got this. Hart is incredibly lucky to have a Mother who will always be there for him in all the ways that he will need. God Bless You Meghan and God Bless your family.

  165. You made ME feel like I could take on one of my children ever becoming handicap, that i could handle it too as bravely. You sound very strong and confident in yourself, which is very commendable considering everything you’ve just been through. Please know alot of people (strangers and family and friends) are praying hard for you and your Hart ❤ Thank you for sharing this with the world and know that God is guiding your life. Much love girl ❤

  166. Meghan,
    Romans 8:28, is my life verse.
    “He works all things together for good for those who Love the Lord and are called according to His purpose. Praying you will continue to share your story full of His presence in all areas. He is a God that is in all the details. The peace knowing He loves Hart even more than you could ever dream, I pray sustains you though this Gift of a Preciously Perfect Child.
    Seriously as you said Hart is a gift and also being entrusted to be his parents is a blessing also.


  167. Praying for little Hart and for his family. God doesn’t make mistakes and yes, you were choosen to be his Momma. I know you are the best person for him, you’ve got this. No matter what, to every concern or bir of doubt I say, but God🙏❤hugs!

  168. You are one of the strongest women I have ever known. God bless you and your beautiful family!!

  169. I’m not sure if you were vaccinated while pregnant or he received any vaccines but please please research them in depth. They cross the blood brain barrier and some babies just cannot take it . It’s too much. Our child almost died due to the encephalitis he suffered (a side effect noted on vaccine inserts) . Sending you love and strength because us special needs mommas are warriors .
    Don’t forget that doctors don’t know everything … there is no such thing as “irreversible” my kid wouldn’t be here if that was true . Xoxo

  170. Thank you Meghan for your inspirational post. I am the mother of an adult child and I am still grappling with trying to feel blessed ten years after he developed an emotional disability. Your courage and strength have touched me. I have never written to a “celebrity” before in my 57 years. Thank you and I wish only the best for Hart and your whole blessed family.

  171. Megan
    Never feel any guilt. Your children have a wonderful and caring mother who will go to the ends of the earth to protect them. All children should be so lucky

  172. You are such a strong confident woman! As Mother’s I believe we have intuitive instincts that only Mother’s have. Good for you to persevere and follow though with your concerns. Prayers for you and your kids and marriage.

  173. All I kept thinking while reading this, is that he was blessed with the right mom!! You got this Mom!! You will give this boy such a beautiful life full of joy, wonder and magic!!

  174. My heart goes out to you. A mother’s gut instinct is always correct. I applaud you for not giving up and being your child’s advocate.

  175. This certainly made me ugly cry. My son has a neurological disorder and was diagnosed at age 15, just 2 weeks before our house fire on Thanksgiving 2016. Symptoms were exacerbated by being displaced from our home. He had to quit football and his grades suffered even though he scored a 29 on his ACT. The point of my sharing is I severely mourn my outgoing, lovable and sweet boy. The meds and his social withdrawal have changed him. You are not alone in feeling mourning, guilt and a fear of the unknown that lies ahead. I stay positive and break down in private. I have come to accept how I deal with this…I’m not accepting of this is it for him. I will continue to be his strongest advocate and stay connected to my support groups (other moms dealing with the same and even young adults). They have all taught me more than his qualified specialists. I have taught them many things (in a respectful dialogue, of course) as it’s a very rare disorder. His doctor is fortunately welcoming of my own research as we both want what is best for him. My heartfelt prayers and empathy is all I can offer to you. It is a special place for us moms and supporting one another is imperative in our own mental health as many will leave our side as they just don’t know what they can offer to us.

  176. Hi Meghan, I absolutely know where you’re coming from with everything you wrote. I like you, also went through in vitro and I now am the mother to 16-year-old twin sons, one of whom was diagnosed with autism before his third birthday. I was like you, and probably most mothers with their babies, in that I knew there were subtle differences between him and his brother. Now here we are 13 years after his diagnosis, he is mostly nonverbal and will always need supports and guardianship. I went through all the emotions you did, and I will tell you that you will go through them all, multiple times a day sometimes every day…bad and good. What I want to share with you is this… I absolutely 100% believe some children are chosen for some parents. I’m not naïve enough to think it wasn’t or won’t continue to be challenging and that it’s this wonderful gift, because some days it just won’t feel that way. But overall I can guarantee you this, you, Jim, Aspen and Hayes’ will be better people because of Hart…Because he will challenge all of you, he will allow you to see the world through eyes that you never thought conceivable. He will make you feel emotions you didn’t think you had. He will make you stronger, even though some days you might feel weaker than ever. It is not an easy road, but nothing ever worthwhile is easy, as cliche as that sounds. So keep your head up mama, you have a lot of us out there that have been on this road and will continue to do so. You are in my prayers, not because I feel bad for you, but because I know it’s going to be strength and endurance tripled that will allow you, the wonderful mother you are, to give your children everything that you have. And you have it, you certainly do. Dont don’t that. God bless you.

  177. Dear Meghan,
    There is no such thing as irreversible conditions, if you are open to try energy work and change your perspective on the human body, we can help, we are able to reverse many brain conditions that the western science are still struggling to achieve. I will be happy to answer all your questions 🙏🏻 Much love 💖

  178. No matter what happens in the future this is NOT your fault. Please remember this. Say it the first thing in the morning, every morning, when you wake up. It is not your fault!

  179. I posted in the wrong blog post—please forgive me.

    Please know my heart goes out to you. You are your child’s advocate and a mother’s gut instinct is right. Never give up your persistence and continue to be the great mother you are.

  180. Hello, I just cross with you trough my Instagram an I couldn’t avoid to read your story. My name is Pamela I’m from Colombia and I live in Bogotá, I have a son named Samuel he is 22months old, he was premature and all these concerns hit me too when he was born.

    As a new mom I had many worries but as you said I take one step at the time, he is very healthy but I get you and your words touch me deeply. Hart is a fortunate boy and I know he will show us that his mission in this world is greater than we can see now.

    Send you a big hug.

  181. What a great mother and human, you are. God first and God only. This is a blessing in a bow that is undefined. Prayers and warmth. You are strong when you are strong in the Lord.

  182. I adore you Meghan! Your strength and courage amidst all you have been through amazes me. I will pray for your beautiful baby and for you.

  183. Consider looking in a great (well-reviewed) ao chiropractor. The brain is neuroplastic and constantly trying to heal itself. Sometimes, for some of us, we need to add extra help. For me, I was almost 4 years in brain being injured hell, I found that help with a great ao chiro. She did special xrays that showed that in a terrible injury, my c1 and c2 had become severely tilted and twisted, compromising blood/oxygen/spinal chord fluid access. My brain started deteriorating, I could not walk well, read/write/speak, track as well and many other things.

    I do not know if any of this might apply to your son. But I wanted to share a bit of my story with you for your knowledge. To add to what you are learning.

    Just getting the xrays done at a good ao can rule this brain impact from nerve compromise in or out. My neurologists and other specialists knew nothing about it or what to do to help. This was true of all my doctors including chiro until someone directed me to an ao after I had lost all hope and was just going through the motions.

  184. My thoughts and Prayer are with you Megan, your compassion and outlook on Hart’s Diagnoses is half the battle of getting the right care for your Son. I do Believe God chooses his strongest warriors to love and care for these beautiful children with Special needs. They truly are a Gift♥️
    I will Keep Hart and your family in my prayers!
    Hugs to you Princess Warrior

  185. I am a Special Educator and has taught for 20 years. Every special needs child that I have had has been a blessing! They are the kindest, sweetest children you will ever meet! Kudos to you for taking this in a positive manner. Don’t give up, always push your son to strive to be the best and never limit him! Always let him try no matter the circumstance. And don’t ever be ok with “I can’t” because he can and will do and be just as successful as anyone without a disability. 😘

  186. As a Mom u know!!you always know !!!thanks for fighting for your son❤️ is very sad that doctors never want to see beyond or do the proper exams or diagnoses of many neurological diseases SPD autism etc and tell you to wait until the child grows! ? and what about the daily difficulties our kids have how do we help them or make them better!? Hopefully with the power of your voice you can advocate and put out there so many wrong things that happens in the health system !!everywhere in the world especially in small towns that we need help and raise the voice of so many Mamas who go through the same situation and struggle and are not heard 🙏🏼

  187. Well, what a lucky boy to have you to care for him, I watched you search for the truth with Vicky ex boyfriend. That showed that you’ll get to the facts, to the complete truth and good on you, you’re stronger than you think. I can’t use the Instagram as I’m an older lady, but I felt so sure that you’re the best mother your son could have. None of us know what life throws at us, but there’s always a reason for things, it hurts like hell sometimes but we have to pick ourselves up and carry on. Well done to you for grasping the torch to find your way to give your son the very best. Don’t let the little things and people get to you as you’re too busy giving the best start to your three babies good on you. Janice👍🏼👍🏼👍🏼👍🏼👍🏼🙏🙏🙏🙏🙏🙏🙏🙏🙏

  188. Meghan- so sorry for your news. I did Hpyerbaric Oxygen treatments for my daughter who had developmental delays and brain damage and she improved immensely- I went in with her! Helps stroke victims too.

  189. Meghan, I LOVE your attitude towards your son’s diagnosis. I have a brother who is 13 months older than me who has CP and a few other challenges. I can’t imagine my life without him and he has always been “normal” to me. I know it was not easy for my parents, especially my mother, but I also know for a fact we wouldn’t change a thing about the last 32 years (yes, of course no one wishes a disability upon their children, but it really is a blessing in disguise and God is SO good). Praying for strength for you and all of your family!

  190. Beautifully written. My close friend at work is 63 and had a “whoops” baby at 41, her 4th child. Her first was born with spina bifida, and her last baby was born autistic and “severely retarded” (her words, not mine). Her first baby, who was wheelchair bound for life, passed away at 37 & no one saw it coming. She says all the time that Joey, her whoops baby was a true gift from God because he kept them going when they were so grief-ridden because they had to keep their lives moving for him. Moms are super heroes, especially ones with special needs babies. Mary (my work friend), says that this will change your life in so many ways, but mostly in truly amazing ways. Thinking of you guys & Hart is a lucky little guy to have a wonderful family to navigate him through life ♥️

  191. Meghan,
    As I read your post, my eyes are filled with tears and then realize they are tears of joy. I have walked this exact path with my own child….she was a premie, born 6 weeks early, traumatic birth story and raising a child who had always been behind on meeting milestones.
    At 18 months we sat with my beloved family doctor as she encouraged us to seek a neurologist referral and MRI.
    I remember sitting in Dr. Tervo’s off at Gillette Children’s Hospital in Saint Paul in October 2006 with my 8 week old baby in his car seat and Emily in my husbands lap and hearing the exact same diagnosis. Periventricular Leukomalacia. I went straight to the library and researched as much as I could. Like you, I allowed myself to go through the grieving process.
    From day one, I know that we have a child with special needs for a reason. She is a gift and I treasure her everyday. SHE has taught me so much and most of all patience.
    I’ve been the mom of a daughter with PVL for almost 15 years. It’s been a journey.
    Please reach out if you ever have questions or just need support from a fellow PVL mom. (

  192. Wow. Megan, my prayers for Hart and for you and Jimmy. God’s got this as you well know, and it may be one of the biggest blessings you have yet to unwrap. He’s a true gift and will teach you many things. Take heart. For Hart.

  193. Thank you sharing such a devastating event. With a warrior for a mother, Hart will excel at everything in his life. No other option!! ❤❤❤❤❤

  194. Meghan,

    As a mom of two, I can’t imagine the stress of this diagnosis amongst all things. As a Christian, I know God allows thing to occur to draw us closer to Him.
    To see his glory, to see Him turns ashes into beauty, to use His power to heal and restore all areas of life. I pray you find Him in the midst of this and allow Jesus to walk you though it. He can heal it all. Romans 8:28-God works for the good in those who love Him and are called according to His purpose. I will cover you all in prayer. From another mother and sister-in-Christ.

  195. Meghan, what a rough one. One good thing is that you have a plethora of mom’s out there who have faced similar circumstances and you can count on to vent to. I myself have a daughter who is about to turn 32 and we found out when she was in kindergarten that she had brain damage (probably from her birth) and she was developmentally delayed. She is 32 but mentally about 15. Cannot read, write or do math. It’s very difficult raising children when one is so different and that was a serious struggle for me. Professionals can sometime be so cold and callous about it all.

    My point is – don’t go through it alone. I know it’s hard to talk about, but start a group or find a group that can just help you get through the rough nights. I had no one – all of my friends had perfect children and I was alone. I had one friend who was my rock and she got me through it. My husband was absolutely in total denial his whole life.

    God gave you this gift and may he bless you. My daughter and I are joined at the heart and soul and she is my greatest blessing. Hugs!

  196. Mama you got this! I have two special needs kiddos and yes it’s not what I had planned. And yes I still grieve for the kids I envisioned but they have changed my life for the better in so many ways. I cannot imagine them any different. Hugs and so much strength being sent to you.

  197. To Hart’s Mommy,
    I somehow managed to have a big smile on my face, through tears, at the end of reading your blog. God bless you…but I see, He already has!

  198. Blessings to you and your family. You have grown into a remarkable young woman and mother. Hart is lucky to have you. I am a life-long Cardinal fan, your husband should be ashamed for embarrassing you and his family. Please know how many people admire you and your courage at this difficult time.

  199. God bless you MKE❣️ Your outlook should be an inspiration to other parents of children whom many often refer to as their diagnosis first. You are correct; Hart is a child first and foremost and he is a blessing . We all have needs. Why on this earth for some we refer to these as special needs or disabilities has never been clear to me.

    We all have challenges in our lives…every single one of us. Please continue to share your life with Hart. I believe that many others, including myself, are rooting for you and your family.

    Be still and know that I am God. Psalm 46:10

  200. Saw your article on People and had to come post. Welcome to the parents of special needs children club! Nobody wants to join but once you’re in you’ll see it’s not all bad. Find your tribe and hold on tight. You can do this mama!!

  201. Hart is so lucky to have a mama that pushed when she knew something was wrong, especially when the doctors said otherwise. Mom always knows best! Keep powering through mama!

  202. As a mother we know … we just know. It’s amazing how you kept fighting for his right to know what was going on. My oldest daughter was born with Congenital Hydrocephalus. No treatment just brain surgery when her shunt clogs up. It’s so scary when they are so fragile. She was diagnosed in my womb. Like you I felt a bit guilty but again God spoke to me and said I chose you to be her mom. After brain surgeries, eye surgeries , therapies of every kind she is graduating college. Yes college…. she’s had to work so much harder than her peers and siblings and has even needed some accommodations. But she’s doing it! Never stop
    Believing in God and miracles !
    You and Heart are strong and blessed to have each other and those around you. God bless your family praying 🙏

  203. Hi Meghan –

    I know it is a ton to process right now – but I want to encourage you.

    My youngest son has CP – and I wanted to tell you there is no better place to be than St. Louis for a child w/CP. We moved here 3 years ago and St. Louis Children’s is an incredible center of excellence for CP. My son is now 17 and their impact has truly been life changing. He had the Selective Dorsal Rhizotomy surgery a couple of years ago and even though he was older it has just been amazing how much it has helped. People come from all over the world to St. Louis Children’s for that surgery. Hart is in such good hands – they really do such a great job working together and thinking about the whole child, not just their specific area.

    It definitely changes your path but the path is still a great one. You will look back in a few years and be amazed at how much he has impacted all your kids for the better – I promise.

    Hugs to all – p.s. – he will LOVE St. Louis Challenger Baseball.

  204. My respect for you is growing daily. This was s so much more than a reality show…it’s life. You and your family. You are blessed with Hart.

  205. Oh my God I am so sorry for you and Hart. The strongest people I know, who I envy and respect the most, are caring for their child or children with disabilities. I was a critical care nurse for 25 years and nothing I did ever compared to these parents. Meghan, you have lot of people out here puling for you and Hart, no mater what happened on that OC debacle. I was a huge fan in the beginning and a resident of South OC, but it got so trashy I haven’t watched for years. But that is in the past and you have new challenges. I am with you in spirit now and you are all now in my prayers. Please keep us updated on Hart’s care as well as how you are doing.

  206. Thank you for sharing your journey and Hart’s story!! Thousands of people will be praying for you alll!!

  207. I had a brother with neurological damage due to issues during his birth. He was 10 years older than me (He passed away 5 years ago at age 63.). He was and remains my biggest blessing. Most everything I cherish and hold dear in my life was due to having my special brother, my husband and children at the top of the list. I never would have met my husband had I not been blessed with my brother.

    I know all your children are a blessing, but Hart is a special blessing for all of you and all those he will meet. My brother changed people’s lives for the better. I will never stop missing him until I see him again one day.

    Life will be difficult at times but it will be so, so worth it.

    Sending love and prayers,
    Karlynn Anderson

  208. So sorry to hear this. Saying a few extra prayers today. This is not a death sentence, just a new way of living. I am glad you were able to get answers. We are all rooting for him and for your whole family!

  209. Dear Meghan…. I never…. I mean never ever ever contact “celebrities”….. but I wanted to tell you about my very special friend…. his name is Mackey Oates… from Memphis Tennessee…. a devout Cubs fan I’m so sorry to say… he was born at 20 weeks… his parents were told he wouldn’t live through the night…. he passed away the Saturday before Labor Day this past year….. he was 35 years old…. this most perfect amazing loving kind beautiful boy was responsible for changing countless lives…. people just KNEW Mackey O….. he had Cerebral Palsy…. nobody really knows if he “understood” what people were saying…. but I know… his mom knows..Mackey is not my son… … Mackey was a patient at the chiropractic office that I work for…. I met him 3 years ago when I began working there…. he is absolutely the most special person I will ever know in my life…. He is…. as you so beautifully said….. a gift…. my gift and a gift to everyone who ever came in contact with him…. if you need a smile… and I’m sure you do….. look up Mackey and Friends at Hope Church in Memphis TN….. you will see nothing but a mirror to the joy in your future….. Hart will be fine….. God picked exactly the right mother for him….. please know….. you’ve got this!!!! Xoxo!

  210. God bless you! You are a warrior mom!!! I too am one & it won’t be easy but I know we’ve been chosen to take care of very special gifts (each child is precious and a gift indeed but children with special needs are even more so). I tell my husband all the time that I feel as though one day when we get to heaven God will ask us “how did you take care of the special gift I put under your care?” We’re chosen and we must do right. Love, care for, protect, guide, cherish and cheer for them!! You got this Mama! I will Keep your beautiful family in my prayers!

  211. Hi Meghan,
    Have followed you since you joined the franchise and have followed since you left
    In light of all you have had to and chosen to share in recent weeks, I felt compelled to send this.
    Want you to know strangers care. Strangers empathize, strangers pray and send nothing but love your way.
    Take good care of yourself. Blessings…
    Ann (mother of 2,grandmother of 4, widowed since age 39. Now you know who I am)

  212. Dear Meghan King ,

    My thoughts are with your son and family . You’re a strong lady and you will do whatever it takes to get the answer.
    Everything will work out , and don’t give up . I’ve one place in mind , when you need an answer , that would be
    Mayo Clinic , in Minnesota . Best Wishes , Debbie from Illinois

  213. As a mother of a daughter who also had a very similar experience. She is now 19 and her life has for sure been a journey. I also kept feeling as if something was wrong with her immediately after birth. Feeding issues, jerking, high pitched cry….Drs said I was a over- worrying mom. I had a son who was 4 so I knew she was different. At ten days old we rushed her to the ER because she would stop breathing. Long story – short – she has micropolygyria. She also had two subdural hepatomas and a skull fracture due to her being delivered transversed. All of this was undetected until she was readmitted to hospital at 10 days. Praying for you. One day at a time….

  214. Meghan, you are truly an inspiration. Thank you for sharing your beautiful babies story! My daughter was diagnosed with PVL at 15months old, she is now 2. She has CP and apraxia of her speech as a result. I to, knew something was wrong and I fought so hard to have my voice heard. Your family is in my prayers. As another PVL mom I can truly understand the journey you are on. Hart will be a blessing to all he meets.


  215. Meghan,
    I am an occupational therapist and a mom. You are an amazing mother and you will meet this challenge with the strength and grace that you have all your other challenges. Please know I and others are here if you ever need anything. You, Hart and your family will be in my prayers.
    With love,

  216. Unique learners teach us so much about being in the moment and not taking life for granted. Hugs and prayers as you forward with your new adventure.

  217. Sorry to hear of Hart’s diagnosis but I am proud of your diligence in getting the answers needed to help him get the services he needs. Praying for you as I know you have the weight of the world on your shoulders right now. Things will get better xo

  218. Thank you for opening up and sharing your story. I too have a child with special needs. While pregnant, I found out my son was going to have Emery Dreifuss Muscular Dystrophy. I was devastated, but felt more devastated when doctors suggested I could have an abortion as a solution. That was never an option for me. Although, my life felt like it had stop. I couldn’t help feeling guilty, I knew I had to get it together and be tough for him. God had a special plan for me! My son, Evan, became my special baby. Not because his disease would define him, but because he would help me learn and teach us so much about life. Your son, Hart, is a gift from god, and he will also teach you about yourself and life. God chooses strong women to be the mothers of special children. Become your son’s advocate! Get the help he needs to help him overcome the hurdles that may come his way. Early intervention is the key! He will learn to overcome, but most importantly he will learn to persevere. Your not alone in your Struggle. Prayers ascending your way.
    With love,
    Yazmin Montes

  219. Please don’t lose hope..!You baby boy will be safe and sound…God will give you and your family the strength and courage to get through this..!!

  220. That’s right you fight for your baby. A mother always knows. You are such a mighty warrior. God knew he picked the right warrior for him. Truly inspirational and respect for you during this big challenge. But you got this. Love and blessings always.

  221. As a fellow special needs and First Steps parent, I applaud you for your positivity and acceptance. That’s exactly what these beautiful souls need from us. That isn’t to say you won’t have moments when you’re sad. The hardest part for me is the teetering between hope and reality. I will say that the milestones are so much more magical and are celebrated that much harder. I wish you the best in your journey and if you need to connect with other special needs moms in STL, please don’t hesitate to reach out. Community is so important!

  222. Bless that boy! Good mothering can overcome soooooo much and it appears he hit the jackpot in the mom game.

  223. Hang in there. It’s still hard knowing your kiddo will have challenges that you cannot control. My son, Teddy, is now 3 was born with a form of Dwarfism. We’ve done multiple surgeries, MRIs, brain shunts, PT, OT, speech, etc. it’s a lot of work but well worth it. Happy to help with doctors, First steps, therapies, etc. It takes a village

  224. Hi
    My twin daughters were born at 37 weeks. I also noticed something was wrong with one of them. We saw a lot of doctors and they all said she was fine until I finally got a referral to do an MRI when she was 10 months old and then we saw that she had damage in the white matter of the brain (PVL). We started physical, occupational, speech therapy right after and when she was 2 years old she finally got diagnosed with cerebral palsy. My daughter is doing amazing, she is now 9 years old, she learned how to walk independently without assistance at 5 years, she works very hard and continues her work at therapy. She is a happy girls at school and has so many friends. I was devastated when I first heard the diagnosis and knew that she got a long way to go, but that feeling gets better with time and she has taught me so much about patience, hard work and perseverance. She never gives up. You are a wonderful mom and your son is luck to have you. He is going to be fine and do amazing things

  225. Here I am…moved by your honesty and courage! I have never read your blog, but today…I had to come and read. You have captured all our Harts…and I applaud you for being a voice so badly needed. I admire your courage, speaking out. You have an audience that will learn from you…thank you, thank you. For all the Harts of this world.

    Take good care you wonderful lady…!!

  226. Meghan – you are doing an amazing job of advocating for your son! As a mom of 2 boys with Autism, you are doing all the right things – continuing to push for answers, reaching out to all experts/resources, trusting your instincts and not being afraid of a diagnosis or labels. It’s emotional and exhausting at times, but you will figure it out day by day. There is no roadmap for children with special needs, so it’s a whole new level of parenting. You are so smart to engage Early Intervention services as we found terrific therapists through that route – better than just basic private therapy. States and public schools are the best experts for special needs kids — pediatricians are just not trained in this area. We lucked into a terrific Developmental Pediatrician for our youngest in Chicago. **One other recommendation for you. My youngest is far-sighted and glasses are helping him strengthen his eyes. I see some similarity in the pictures of Hart. Find a Pediatric Ophthalmologist who can confirm if he may also be farsighted. We use glasses for my son by Miraflex and he has done really well with them. It helped him with his crawling and walking and his eyes have straightened out when he focuses on something close to him.
    Best of luck. Kids with special needs have additional challenges, but also bring you special gifts!

  227. Here’s to your resilience and for listening to yourself, and your Hart. Will continue to follow your journey as a fellow new mom learning how to better tap into my own intuition as well. Rooting for you and for little Hart.

  228. As parents of a “special child” who had brain damage from the womb, our prayers are with you. So is His love, though at times you may not sense it. Hart is one vehicle through God sends his love to you. You have our prayers.
    Steve & Mary

  229. Hi
    As sonn as I looked at the beautiful picture I realized he has a right brain injury manifesting as weakness on his left side.
    I am a nurse attorney for many years. I would suggest obtaining his birth records including fetal monitoring strips etc..
    and have them evaluated. PVL also is more common amongst primies which is foud more frequently in twins.
    Fell free to reply if you wish to speak with me

  230. I too had to fight hard for someone to hear me about my child. I knew the minute i held her something was off. Everyone said shes fine but i new it wasnt. She was diagnosed with mild hemaplegia at five months. It took occupational and physical therapy to get her ready for kindergarten. I worked with her everyday probably pushed a little too lol. She is now a happy healthy 22 year old. You would never know she was born with weak muscles unless you knew her and her story. She still gets cramps and a hand spasm here and there. Shes very athletic and plays and coaches volleyball. So megan my heart goes out to you but in a way that says trust your instincts go with your gut and show him yes you can in the very bests of ways. His way is pathed with possibilties. 🥰🙏

  231. Hello,
    I just read your story… I am so sorry, but it will be ok… I went through the same thing with my daughter, she has PVL… You are not alone. We found out through an MRI as well. I have never met another child with that diagnosis.. We were devastated when we found out too.. some things have been a challenge, but my daughter just turned 11 and she is the happiest girl in the world and I wouldn’t trade her in for anything. Give Hart all the love in the world and make sure he is happy.. that’s the best advice I can give. Make sure you, him, and your family live your best life on your terms and don’t let others bring you down. Good luck! I’ll be thinking of you.

  232. You’re such a strong woman! Hart is so blessed to have you as a mom, and you’re blessed to have him as a son! PrYers are coming your way!

  233. My heart is with you. You are so strong & your faith is strong. To go thru all of this you’ve endured the last couple weeks, you are a Rockstar & never think less of yourself! XXOO

  234. You’re such a beautiful, strong woman! Hart is so lucky to have you as a mom, and you’re blessed to have him as a son! I’m praying for your entire family!


  235. I don’t normally reply to any blog posts or people on social media but I just wanted to encourage you and thank you for your openness in this journey.

    My daughter also suffered brain damage at a month old and the not knowing what would happen was the most difficult part. But I just clung to the fact that I felt so blessed and honored that NO MATTER the outcome God chose me to be my child’s mom. Of all people, I was the one who was blessed enough to walk this journey with her.

    She too had an 85% chance of cerebral palsy, and 6 years later and she is thriving! No signs of deficits by any means. But no matter what, if the healing came in this life or the next, I was okay with that and still so blessed to have my girl.

    Praying for you and your journey with your son. It can feel very lonely at times, and it can feel so hard not to check if they are meeting every milestone every 5 sec. just enjoy it because as us moms know, they are only little for so long. Sending you love and know that you got this!


  236. I don’t think or know if the words I’m sorry are appropriate and or correct.. if that makes sense??? Don’t get me wrong….I am sorry, sorry that he will struggle, sorry that you will have to worry and be scared for him. Sorry that people can and will be be cruel.
    And though I don’t know you, except for what they put out on tv, what I see is that you are fighter and from what i could tell you do the the right and just thing no matter what the personal cost is to you. You are a blessing.. what a great gift you have been given to navigate this beautiful boy through this life. I hope that I did not offend you or cause you more anguish… Thank you for honoring and sharing this difficult time and Hart’s story with us.

  237. Well God certainly chose the right mom to be blessed with the gift of Hart. Stay strong and joyous. I will be praying for you and Hart.

  238. My younger brother has a form of muscular dystrophy and is physically and mentally handicapped. I will never forget when my fifth grade teacher said that families of a special needs person were given extra doses of love. I think that’s absolutely true. He’s 38 now (we didn’t expect him to make it to 30) and still the apple of my eye.

    Whatever happens with your marriage, you will love that little man to death. And he will be the apple of his sisters’ eyes. Much love.

  239. From one Special Needs Mama to another, you are amazing and you can do this! Hart is a precious boy. I don’t normally read blogs but the story of your fight for answers for Hart touched me. My daughter has a rare gene mutation (1 of 3 in the world!) I was devastated when we received her diagnosis. She was on hospice for the first 13 months of her life, but she is now 5 and about to enter Kindergarten! But just like you said, it’s a blessing. I can tell you we have honestly had more opportunities and met the most amazing people BECAUSE of Lily’s diagnosis. It’s ok to grieve for what you wanted for him, just try not to get stuck there. You are fierce and fought for him just to be born, which shows you can do this! If you need some SoCal support please feel free to reach out. There is so much out in this big world for Hart to experience, along with Hayes and Aspen. The world will open up to you and your family. You’ve got this Mama!

  240. I’ve never seen the show you are on but I know a kindred soul when I see one.

    I have a special needs child too. You are probably in for a wild ride and I wish you all the best. Keep your friends and family in the loop and accept help, the more people that get to know and love your son the better. I tried to do everything myself and am still picking up the pieces. ❤️

    PS he’s adorable

  241. Your an AMAZING example of the unconditional love of motherhood ! I’m in awe of your positivity in hard times …. TRULY !!!!! Sending hugs to you and those sweet babies , keep on keeping on ❤️ ! .

  242. Praying for you and your beautiful family. You have had a lot to handle, but you’re a good and strong person. God is watching over you and Hart. Hart is lucky to have you as his Mom. I hope things work out for you and Jimmy.

  243. My prayers for Hart and your whole family. He is a real cutie patootie and so blessed to have the parents he was given. I know he’ll thrive with your family and God’s hand. Bless all of you.

  244. You are such a strong beautiful woman, & your children are so blessed to have you as their mother. I will keep you all in my prayers, as this will likely not be an “easy” journey. Many kudos to you for listening to your motherly instincts & following through. You are a true warrior ❤️.
    Lots of love to your family,
    Melissa G.

  245. My son is almost 30, he was born at 28 weeks in a time that they had just started trying to save 28 weekers. He had grade IV brain hemorrhage soon after birth and had brain surgery, a VP shunt placed at 1 1/2 months. They told us that IF he survived he would be severely brain damaged, they said a vegetable. We did not accept that. He did not accept that. He fought and we fought constantly. He went to therapy 4 days a week until he got school aged and then it was twice a week. He has had 27 surgeries and countless procedures. That 28 weeker that would not survive graduated May 11th 2019 with his Bachelor’s in Criminal Justice. He has Spastic Quadraplegic Cerebral Palsy and walks with a cane but he is AWESOME!!!!! Hang in there, there will be times you feel like giving up, there will be so many tears, But you, your husband and your kids will be ok.

  246. God be with you and your family. You are right I’m saying you are Blessed to have been chosen to be Hart’s parents. God doesn’t make mistakes, He chooses only the best to take care of His Special Children. He will see you all through this. Know that you are loved and we are praying for you and your family.

  247. Meghan, I have always liked you… Now I absolutely love and respect you 💯% more‼ Hart, as well as siblings are perfect, just like all of God’s children… Much love to you.

  248. My sisters first born has cerebral palsy. He was born at Duke medical center 44 years ago. I was at the hospital the night he born. The first six months everything seemed normal, then he started having ridged legs, cross eyes, hard time swallowing. My sister went on to have three more healthy sons, all three played college football. He left their home at age 23, to live in a medically cared for home with others that have this insidious handicap.
    He is the most special person I have ever known, I have four healthy children and thank god for them. You will get through this but it will be harder than anything you have ever done. You are right about being chosen, not everyone could do it.

  249. Meghan, please look into VAERS and the possibility that your child was vaccine injured.

  250. My youngest brother was also born with CP. The “specialists told my parents that he would never be able to function normally and would have to be institutionalized. My mom refused to accept this and started working with him everyday. She would do exercises and stretches with him to help with with the spasticity. As he got older she made it into a game and he would always get a special treat when he was done. He had tendons cut on his right leg and arm so he would have better use and she bought him video games to help with his eye/hand coordination.

    He is now 42 years old. He is one of the smartest people I know. He has a college degree, works as a welder and is able to weld better than most people with two good hands. He is now married to a beautiful lady who also has CP.

    I hope that this brings you some peace. Though the doctors know a lot and I’m always thankful for them, sometimes they aren’t 100% right. Also, like you have already done, trust your gut. You know your son better than anyone else does. Just keep fighting for him. Bless you and your family.

  251. Meghan,

    You’re so strong, and as mothers we have to be however, you have what I call God given strength! You’re going through it yet you see the blessing in ‘it’! You’ve got this because God has you and your precious family.

    I know it took an even greater emotional toll to write this blog! I just know it’s going to touch so many lives and be just what that one person needed to read after receiving devastating news. Thank you for sharing with us.

    Sending lots of love, hugs and prayers to you, your family, and especially Hart!😘

  252. You are right you are blessed with such a child. We have a grandson with CP and legally blind. He is a handsome boy. Funny as can be and doesnt let his diabilities get him down. You will marvel at what he’ll be able to do given the chance. He’s even driven a stick shift on a very big empty parking lot and his left side is function is greatly diminished but he did better than his fully functioning sister. He take great pride in this and his other accomplishments. I’m sure the Edmonds will take great pride in his accomplishments they’ll take a little longer than his brother but he’ll do it.
    Prayers for the Edmonds family

  253. Meghan you are my hero. I don’t know where you found your strength or gift in words but to say I admire you doesn’t capture how I really feel. Lately you’ve been handled so much to bear so I’m sending you the biggest HUG. I will be praying for you Hart and your family each and every day. God Bless. 💕

  254. Meghan, I see you have a lot of support here and you’re not afraid to reach out. That’s hugely important. As a mom who has been through this more than once (twin preemies with ASD and a single preemie later dx’d with Autism, CP, etc.) I read your post with very clear and understanding eyes. And you know what? I have hope for Hart because of YOU.

    YOU KNEW AND YOU TRUSTED YOUR INSTINCTS that Hart needed a diagnosis (whatever it is) in order to get those CRITICAL early start services and you fought like hell to get that. Bravo, girl! This won’t be your first time! The early start heroes will help you help him and, I promise that you will meet many amazing people on this journey with Hart.. people that will show you the way, people that will just give you a shoulder to cry on, stupid people that will say dumb stupid shit to you (yes, this WILL happen) and even they will teach you and help you in their own f’d way. I know… that’s weird, but true in retrospect.

    You’re a firework, Meghan. Don’t lose your fire. You’re going to find out how much tougher you really are. Hold on and connect with other warrior special needs moms. It’s a very special club and you are in it now. You’ve got this. Hold on when you need to and don’t forget to breathe. Enjoy every minute. It goes fast

  255. You’ve got this, Mama. You’re already pushing for what you know he needs and you will be his biggest champion in his life as you continue to advocate for him. Continue to trust your instincts. He’ll be fine. You’ll be fine. I can’t wait to watch his growth and progress…and yours. We special needs mamas have to stick together…welcome to the sisterhood!

  256. Hi Meghan – we just lost my brother, Bill, at age 62, born with cerebral palsy, and our joy of joys throughout his life. Bill, too, was a gift, always happy, never complaining. He had a way of welcoming everyone into his life. He is now at peace, resting with our mother and father in Arlington National Cemetery. People like Bill and Hart are gifts, and I’m a better and stronger person for having had him as my younger brother. The challenge now is to get through life without him. Hart is a lucky little boy to have you as his mom ❤️

  257. Dear Meghan,

    Thank you for sharing and just thank you. I can only imagine all the thoughts going through your mind. God has a plan. Hart is chosen. He is a gift and you are the vessel that is blessed to guide him and to love him.

    I have a niece who has developmental challenges in addition to severe autism. It took many doctor appointments to finally have her diagnosed with Autism. This was more than 25 years ago. We knew from the day she was born that something wasn’t right. She is my brother’s first born. She is the most beautiful young lady. Her heart is pure and big. I am humbled by her.

    You are strong and it’s okay if at times you feel weak. Those days will come. Those days will also pass and you will be even stronger. Your heart will always be full. Your Hart is beautiful.

    God bless.

  258. Love, love, love your attitude! There is so much support for kiddos with CP, it is truly a gift to be able to have these kiddos in our lives. You are a strong woman and will rock at all that has been given to you.

  259. My son has autism. When I look at him, I think, “thank God he was given to me “. Imagine if he went to someone who didn’t fight for him as hard as I do, or understand how truly magnificent he is, the way that I do. You are right! You were chosen for all of the special challenges and joys that are coming your way – challenges very different than other parents face… And the kind of joy you never imagined possible!

  260. Meghan…This is a trying time for you but believe me, The Lord will bless you. I know from experience. My hubby has worked ever since we got married on the road during the week in sales. We had 3 sons and there was never a dull moment. Oldest son one day went to the neighbors house and brought a big goat home and into the house. Middle son was a good talker at a young age but, he was always saying the wrong things to people, wrong thing at the wrong time! Example: If he saw a heavy person he would ask them why are they fat. So embarrassing! Even at school to his teachers! I got a lot of phone calls from the school. My last child was emergency C-section. At 18 months he had his first seizure. He was talking real well until then…but he stopped talking. He had several seizures. The local school had him tested at 3 yrs old. He then had speech class at 3 yrs old at the school and it helped and he started talking. After all that all 3 kids finished school, went to college and have master degrees, all are married, and all 3 of them are successful. The youngest child is a multi-millionaire. He is the most successful of the 3, is involved in the community, and last year he bought an airplane! I just want you to know that prayers get answered. My children now are ages 39, 34 and 31. Just trust the LORD! We will be praying for you and your family!

  261. Dear Meghan,

    Our son was diagnosed with PVL and CP at 18 months of age, after 2nd & 3rd opinions and jumping through hoops like you did. He is now 15, uses crutches to walk & a wheelchair for longer distances, has some mild vision & learning issues, but is one of the most joyous & happy people I know & has touched many lives. Our family has been blessed in many ways because of his disability.

    You’ve already proven you’ll be a tireless advocate for Hart. You have what it takes, and when you feel lacking, God will provide what you need. Take it one day, one issue, one test, one therapy, one procedure, one decision at a time…as you’ve already discovered, there will be many. It won’t be easy, but try not to focus too much on what Hart’s future will look like…as others have commented, anything is possible. Having high expectations can be helpful, but I’ve found that contentment with where our son is at & may be in the future brings the most peace.

    You said it well…you have been chosen to care for this precious life. You are blessed. But give yourself permission to be HUMAN too. There will be times when it all just sucks, and you need to grieve, cry, complain, and ask “why?” Don’t be too hard on yourself…you’re no less of a warrior mom, and you’ll soon regain the strength needed to take the next step forward in faith. You are in my prayers.

    “Fear not, for I am with you; be not dismayed, for I am your God. I will strengthen you, I will help you, I will uphold you with my righteous right hand.” Isaiah 41:10

  262. Meghan, I just want to send you positive thoughts. Hart is the luckiest person in the universe to have such an insightful Mommy that realizes God only gives special children to special people. Wishing your family the best, and want to let you know your family is my prayers. I believe you are going to inspire others. Not only with people caring for their precious little ones, but an inspiration to anyone that needs to see that LOVE conquers all and that we are stronger than we can imagine. XO

  263. God bless you, Meghan. You’ve got this! Hart is in the best hands possible and he will not only do just fine in life, he will soar, knowing he has such a caring, loving and strong mother as you to care for him and guide him.

  264. OMG, this brought tears to my eyes. I have so much respect for you coming forward to talk about something that is so personal and private. I love your approach to this challenge and just know that there are a lot of moms that have mad respect for you.

  265. Please believe God for his healing. God wants him well even more than you do. But remember that praying for him needs to be specific and not “Lord heal my Hart”. Speak to his body. If you are a Christian, you have authority over sickness and disease – and evil. Jesus not only paid for our sins on the cross but for salvation which means healing, sins forgiven and deliverance. So tell his body what to do.

  266. 40 years ago, I went through the same thing when I had my 2nddaughter. I knew there was something wrong a few hours after she was born but the doctors insisted she was fine I had them do a CAT Scan after her 1st birthday and that’s when she was diagnosed with cerebral palsy. It’s been a long journey. It is a process, one day at a time. She’s a Software Engineer and owns her own business. She’s been featured on CNN, BBC and a few other Television stations worldwide. Never lose hope . You were selected by God to take care of Hart. There are lots of blessings when the assignment is well done.

  267. Prayers as you embark on a this journey. Having taught in an inclusion classroom I know first hand that every child has special needs, some more complicated. Try to remember that the label is used to secure services, not to stigmatize your sweet Hart.

    Below is a beautiful article I often shared with parents. From what I can gather God used this logic in chosing you as a mom for Hart.

    The Special Mother
    by Erma Bombeck

    Did you ever wonder how mothers of special needs children are chosen?

    Somehow I visualize God hovering over earth selecting his instruments for propagation with great care and deliberation.

    As He observes, He instructs His angels to make notes in a giant ledger.” Armstrong, Beth; son. Patron saint…give her Gerard. “Forrest, Marjorie; daughter. Patron saint, Cecelia.” “Rutledge, Carrie; twins. Patron saint, Matthew.”

    Finally He passes a name to an angel and smiles, “Give her a special needs child.”

    The angel is curious. “Why this one God? She’s so happy.”

    “Exactly,” smiles God, “Could I give a handicapped child to a mother who does not know laughter? That would be cruel.”

    “But has she patience?” asks the angel.

    “I don’t want her to have too much patience or she will drown in a sea of self-pity and despair. Once the shock and resentment wears off, she’ll handle it.”

    “I watched her today. She has that feeling of self and independence that is so rare and so necessary in a mother.

    You see, the child I’m going to give her/his has her own world. She has to make her/him live in her world and that’s not going to be easy.”

    “But, Lord, I don’t think she even believes in you.” God smiles, “No matter, I can fix that.

    This one is perfect – she has just enough selfishness.”

    The angel gasps – “selfishness? is that a virtue?”

    God nods. “If she can’t separate herself from the child occasionally, she’ll never survive.

    Yes, here is a woman whom I will bless with a child less than perfect.

    She doesn’t realize it yet, but she is to be envied.

    She will never take for granted a ‘spoken word'”.

    She will never consider a “step” ordinary.

    When her child says ‘Momma’ for the first time, she will be present at a miracle, and will know it!”

    “I will permit her to see clearly the things I see…ignorance, cruelty, prejudice….and allow her to rise above them.

    She will never be alone. I will be at her side every minute of every day of her life, because she is doing My work as surely as if she is here by My side”.

    “And what about her Patron saint?” asks the angel, his pen poised in mid-air.

    God smiles, “A mirror will suffice.”

    Erma Louise Bombeck was an American humorist who achieved great popularity for her newspaper column that described suburban home life from the mid-1960s until the late 1990s.

  268. I’m sorry you have to experience this for your baby. I love him and wish him well. And I’m asking God and Jesus and Holy Spirit for a miraculous healing of your sweet Hart. I know miracles work. because I’ve been a recipient of many that God bestowed upon me. With prayers and some without. God bless Hart.,you and your family.

  269. God Bless you and Hart!! So many are praying for him!! And yes….. you are so right! You were chosen to have this beautiful child!! You are a great mom.

  270. This is so perfect…this post! I’m so proud of you for demanding to get the tests. For acknowledging something wasn’t right even if it was scary. For not hiding it and hoping it would go away. As a kdg teacher I have seen so many parents deny anything is wrong and then regret that they didn’t get help/intervention earlier! You are doing everything right and have the beat attitude! Hart is blessed to have such a wonderful Mommy who is fighting for him! God bless you, Meghan…listen to your instincts and trust them. God give you strength each day and just love those babies!

  271. Meghan… You are amazing and brave for not giving up on your little baby. He is so lucky to have you as a mother. It will be this reason why he will flourish not matter what is diagnosis will be. We went through the similar thing with our son, Brady now 11 when he was a few months old. I begged pediatricians to take me seriously about his head circumference size, they all said I was crazy. Turns out, I wasn’t. At 2 1/2 we were diagnosed with autism.
    I knew something was wrong. Mothers KNOW. We know our babies. Trust yourself, never give up, never settle, find a specialist, therapist, doctor who will listen. You can do this. Be strong and he will be amazing.

    Good Luck and All the Best to your beautiful family.

  272. Sweet soul, you are looking at this correctly. Your son picked you and your husband before he was born, yes, he chose both of you. Stay positive and always see light. God, guides and angels will always walk beside you and of course your beautiful son. Thank you for sharing. Only sending positive, healing light your family’s way.

  273. You are a wonderful mom and are doing the very best. My SIL has cerebral palsy and leads a wonderful life as a special needs public school teacher and has a husband and four kids. I hope for the best possible outcome for Hart as well as your family situation. Sending you so much love from Texas 💕

  274. Meghan, I will admit I knew nothing of you before today, but the words periventricular leukomalacia I know well and stood out in the news Siri chooses. Both of my boys (17 and 10) have that diagnosis and varying degrees of cerebral palsy. They are unique and wonderful people. Your story reminds me of my own and where I was trying to understand the diagnosis and more so why my son(s) had it, and I still am. But here I am telling you about my story, perhaps because I think I understand something about the place you are in, and what I want to say that helped me was to keep talking to people about what you’re going through. And a simple thing I was told at the beginning was not to turn the wagons in, and I’ve tried not to and it’s helped.

  275. Meghan, my heart aches for you. As a mother of a special needs son (now 22 years old), I can so relate with your journey. My advice to you is don’t leave any rock unturned. Do all the research you can. Do NOT rely on doctors to do what is best for Hart. You are his biggest advocate and voice. He will rely on you for every single thing in his life. You will always do what’s best for him. That what mommas do. I have no doubt you love him more than anyone on this earth. You are stronger than you think. Please know that I am praying for you and for Hart. God bless you and your sweet family.

  276. What an amazing Mom you are fighting hard knowing something is very wrong. ♥️♥️ Intuition ❣️❣️❣️ We all love you and your family ♥️♥️

  277. Meghan,
    You were put on this earth to be a mom. You are smart, kind, loving, and fierce. Life has thrown some pretty nasty challenges your way and you not only deal with them but share your struggles with others. You are a role model to so many . Thank you for showing us we’re all in this crazy life together. Saying prayers for you and your family. Sweet Hart is a very lucky little boy to have you in his corner. 💕💗💓

  278. I have followed you since your Real housewives days. You are a strong woman and will push Hart to be the best he can be. You are his biggest advocate and he will love you for that! Trust your gut… you’ve got this!!!

  279. You have such a beautiful soul and your Hart reflects that beauty! It’s a club of sorts to enter into when receiving that diagnosis and you should be it’s president. Just keep swimming just keep swimming…..floating isn’t an option! 🙂

  280. Please know that I’ll be keeping the lil Hart and you family in my daily prayers Meg. Give it to God, for somethings cannot be carried alone. And know God makes no mistakes.

  281. I’m amazed at the strength you’ve exhibited through such a heart-breaking time. Know that God is watching over you and knows how you’ve struggled. You have a wonderful attitude and hardships can provide you with more insights, more strength, and you will be an example to others.. It is a humbling lesson, but will give you the wisdom you have earned . God loves you and your children. The difficult times will pass too. You and your beautiful boys will thrive in time.

  282. Good for you for advocating for your child!!! He is ever so lucky to have you for a momma!

  283. Meghan,

    I was in your shoes 17 years ago. My first baby. Tests, more tests. but for us still today, a big question mark as to what it is. You have a big support system and great docs here in St Louis. (I’m in O Fallon). I get it. There are unknowns, but you will take on one day at a time and get through the milestones a little slower. (Our daughter didn’t walk until age 2). You’ve got this mom! Covering you in prayer.

  284. Meghan,

    Thank you for sharing your journey and sad news. I hope you know you have a support system via this blog that is keeping you in their thoughts and prayers.

    I so want to hug you and admire your strength as a wife and mother. You take on these roles with such grace and I admire you for the woman that you are. You inspire other women by sharing in your blog.

    My heart and prayers go out to you and your family during this overwhelming time. Remember, love always wins.

    Naples, FL

  285. I ADMIRE YOU! Your STRENGTH, HONESTY & just being simply REAL!! I read lots of your blogs. Thank you!!!!❤

  286. Hi,

    I’m an old mom with a 39 year old girl with severe Cerebral Palsy. Yes, I say girl because she’s our girl. Daddy’s girl. At first you think severe brain damage? No way! She was the picture of health. Her cord was under her arm and she didn’t want to come out. Lack of oxygen for five minutes did a number on her tender little baby brain. I had so many ups and downs. I hated God. Hated him with a passion and screamed it to the heavens. How could you do this to her? To us? I was angry. I carried that anger way too long but who knew what her future or ours would be. My husband handled it without the anger. Tears definitely but no anger. My acceptance of her brain damage seemed to be there when I woke up one day. She isn’t able to walk or talk but she made us laugh and feel happy. Everyone loved her. We had two more girls. As they grew all their friends knew Betsy. Not one of them ever looked twice at her. If her sisters had soccer games, band concerts, Christmas programs she was there – through high school. I’m sharing this with you only because there is a light at the end of the tunnel. I didn’t even look for one. It’s scary. Constant doctor appointments. Going through all the what if’s you can think of. Don’t ever feel guilty for any of your feelings. No one but you knows how it feels. I’m a very firm believer of if you have never been in my shoes do not assume to know how hard it is. It is. We look back now and are so grateful we have her. She’s brought more joy to our lives than we ever imagined

  287. Meghan, I reached out to you before Hart’s diagnosis to not google anything until diagnosed. My daughter also has cerebral palsy. I know you have addressed the vision and strabismus issue but please please stay on top of his vision. My daughter too had strabismus in right eye. She wore the DOC band as well which corrected the eye position however was having issues with reading. What we discovered was her eyes were not tracking together for reading. Find a neurological eye doc to check him as well. My daughter is a lil firecracker and is 16 now doing well. My prayers are for strength and guidance.❤️

  288. Meghan,

    Don’t give up faith. I, myself, had two CVAs as an infant leaving my left side completely paralyzed. My parents were told that I’d never walk, talk, or be in a regular classroom & I did all of those things. I took my first steps at 2.5 and started walking when I was 3. I started talking in sentences early. I am 34 and have gross motor skills on my left side. I am now in grad school. I continue to face hardships, but my parents taught me to never give up. Life takes us places and through things that we don’t know how to deal with, yet we somehow survive.

  289. You are very brave and THANK YOU truly, for sharing your story. Your little miracle is so blessed to have you caring for him but most importantly loving him. May the lord always look after you and your little angel babies.

  290. Meghan- I hAve followed you since you were first in RHOC. You have had your struggles but I always admired how you stuck to your gut. After reading your last 2 blogs, I wanted to reach out and commend you for just that -sticking to your gut when you knew something was wrong. It’s hard to continue to walk forward when your gut is telling you it isn’t … even when experts say otherwise. I want to pray for you and tell you how much I admire your strength to Walk thru the fire no matter what. I pray for you to continue to have grace and strength and you are right, God blessed you with Hart because you are the right mother for him. Keep going and just know people you don’t even know want the best for your and your kids & are praying for you. Thanks for sharing yourself, I know it’s hard. 🙏🏻🙏🏻🙏🏻🙏🏻🙏🏻💜💙💜💙💕

  291. God bless you all. You are a remarkable mom and you’ve got this! He is a precious gift from God!

  292. Megan because you are his Mother your son will be fine. You are so intuitive to him and his needs already. You knew in your heart something was wrong and look how hard you had to fight to figure out his Diagnosis. It is very common for a twin to have Cerebal Palsy and they by no means have to be a preemie so not sure why the docs wouldn’t investigate. I live in 🇨🇦 And work st an agency that works with preemies , children with developmental delays we do diagnosis for ASD, FASD. I will tell you half the battle is having an amazing parent such as yourself who is there to work and fight for their child’s well being. I wish you all the best💙

  293. Meghan! I read your story and I am in tears! The EXACT same thing happened to us with our boy (now 6 y.o,). I knew there was something wrong with him. I too begged for further testing. And I too found out he had a brain injury (as a result of a perinatal stroke). I was told my son might not be able to speak and walk properly and that he might even had some cognitive delays. And I cried. But then, I wiped up my tears and didn’t allow anyone to speak death over my son! Hart will be fine. Start with therapies as soon as possible. Give him lots of love. And have faith.

  294. Mehgan. I can’t stop crying. My heart hurts so bad for you, I feel the pain. I swear I do. I’m so in my feelings but WOMEN you got this. God doesn’t make mistakes. You are strong, beautiful, blessed, and most importantly A MAMA! and nothing can change the way we feel especially about our children. That’s right, you take that strength (those children) and live each day for each other. Cause at the end of the day everything’s going to be alright! Maybe not perfect, but hay. Who is

  295. It is so frustrating when doctors will not listen to us as mothers when we know something is not right with our babies!! I have 2 special needs children, but to me, they are just Special children!! Way to go for being an advocate for your baby-who is SO adorable!!!-and pushing to urge the doctors’ to run the tests that were needed to get a proper diagnosis. Best wishes to you and your family and the journey of life with this sweet baby. One thing I have realized over the years with my kids, that through the ups and downs of dealing with medical issues, we have been blessed to meet so many wonderful people-whether be doctors, therapists, nurses, teachers-and that has been rewarding. Prayers for your Baby Hart.

  296. Sweet Megan… I am so sorry to hear this news but WOW… way to go momma! Never be afraid to get a second opinion, even if the doctors say it is fine. YOU are your child’s biggest advocate and most important teacher. Way to persevere and get some answers!!
    I work in child development field and I go in the homes every week and teach everything to developmental to life skills with families in poverty! I collaborate with First Steps and they are wonderful!!
    Keeping you all in my thoughts and prayers 🙏🏼
    Early intervention is key… you got this!!!

  297. Meghan,
    I have always thought of you as a really smart women l am so happy that you kept on insisting for more from the doctors, because no one knows a child better than his mom. And I truly believe that God only gives us as much as we can handle. I really believe that Hart is so blessed to have you for his mommy, I will be praying for all of you😊
    Donna Ormsby

  298. keep praying to our Lord God……..He listens and does things in his time. the joy of the Lord is your strength!

  299. You are such an amazing, strong and wonderful person. You are brave and so focused. Hart is I. The very best hands having you for his mother and advocate. Stay positive and strong and know you have so many prayers coming your way !
    Much love to you and your beautiful family xo

  300. Thanks you for sharing your story. Sending you and your family nothing but love during this journey.

  301. Oh Meghan! I feel your pain and can relate. Sending prayers
    Just gained custody of our granddaughter who we knew had problems as well. Other issues ( trauma and delay due to alcohol fetal disease. We too just qualified for services with Early Start in California and they are so amazing!
    We feel the same way as you do! We are blessed to have little Saylor James and she is just perfe(. We see this as god trusting our Grandchild with us.

    Please keep everyone updated

  302. You are amazing! Yes, you can do this with God and lots of help! Hart and your other two children are truly blessed to have a mommy like you. We are all pulling for your family and if you remember nothing else from all of the well meaning advise you receive ….. “just listen” God will not forsake him!

    With peace, love and prayers,


  303. I can’t even comprehend what this would be like as a mother. I admire you and think you are an amazing human.

  304. I am so incredibly touched by what you are sharing! My son who is 24 was born with brain damage I AM a special needs mama too. He is blessed to have you stay strong, STAY RESSILIANT, STAY PROACTIVE AND STAY INFORMED. Ask 1,000,000 million questions until YOU ARE satisfied! I stand with you WE STAND WITH you blessing and love from Florida

  305. Girl, you are an inspiration. All your children are SO lucky to have you. I am a mother to young kids too and I am so amazed by your strength. I don’t know you but wish I could give you a hug. I truly truly believe that God gives his hardest battles to his strongest soldiers. One foot in front of the other – you’ve got this

  306. Oh super mama, you truly are blessed! Those babies picked the right mama!!! Bless you girl, you are rock’n thiss mamahood thing… so glad i found your blog!

  307. Sending love from a Texas mommy of four. You are so strong and I do believe God does not give us more than we can handle. So with that you must be a bad ass!! Prayers for strength and happy healthy children always❤

  308. St Louis Children’s Hospital PT department is the best. Get him in there. Also if he does. Have difficulties walking due to statistity from CP Please look into SDR surgery with Dr Park. Best decision we ever did.

    My daughter is now 4.5 and was born at 27 weeks has PVL and CP. we have a Facebook page that has shown her progress check it out ‘walk with Hannah’

    There is a great PVL Facebook groups as well that offer incredible support

    All the best
    Pam Holceker

  309. Thank you for sharing. Hart is so very lucky to have you as his Mommy. ❤️ I admire your strength.

  310. Your story is mine. He was 9 months beyond I got the diagnosis of cerebral palsy. He is now 33 and is the glue for our family. He touches so many lives and brings joy to all he encounters , you are blessed! We have used our life experience to pay it forward. Join Us!

  311. My heart goes out to you and your Hart, Meghan. Your mother’s intuition is the miracle. I am frustrated and sad with you, just reading what you have endured. Now, looking forward is where your incredible strength resides. If you have an interest in supporting what the doctors already are doing, I encourage you to talk with Glenn King at the King Institute in Frisco, Texas about improvements achieved in the area of brain conditions, and particularly cerebral palsy, by applying The King Institute Method. This was my family’s solution, and maybe it will be one for your family, too.

  312. You are a strong, smart and determined woman and a better mom. You can do this alone or with a husbands support.

  313. I admire your tenacity . My son had issues at birth and I knew at 2 months something was off . The pediatrician just kept telling me he was fine! At 1 years old he started “stemming” flapping his hands and making weird noises. Then the speech issues started . I stayed on it and finally got help and was able to get him speech services , which lead to feeding therapy which lead to Choc hospital in Orange County recommending occupational therapy which lead to a diagnosis of Autism and Spd “sensory processing disorder “. It has been a tough road with a million tests, therapy and years of ups and downs . I too felt guilt and sadness for the unknown. My son was a fertility baby and I felt guilty about that as well. My son is amazing and is doing so well and is now 9. We didn’t know what the outcome would be and it was hard but the love you have for your baby will get you through it. And as you have already done, trusting your mothers instinct is all you need ! Good luck! Your babies are all beautiful and Hart is lucky to have you as his mamma!
    I will be praying for you and your beautiful baby!

  314. You clearly are up to the challenges you and your beautiful boy will face. I’m sending you positive energy and loving thoughts.

  315. Love to you Megan and Jim .I am a special needs mom too.I will be keeping Hart and all the family in my prayers.I knew too before doctors told us.❤️

  316. You write thinking ur hiding ur real feelings. As if ur a hero.but ur words are naked. Exposed.
    You consistently write as if ur writing in tears and then u write as if ur writing in bounty paper towels. Ur so confusing. U don’t know the answers in one sentence but u turn around and act like u just won a nobel Peace prize in another sentence, bc u all of a sudden in the same sentence miraculously have an answer. This is like I’m reading a death row sentence. So exhausting. It’s like ur weak, u try to be vulnerable, but ur ego won’t let u, it reels u right back in to some annoying ego control freak. Let it go. It’s ok to not have the answers and to show imperfections. You would look better if u were just real. And let go of the facade. It’s like reading a bipolar tennis match. I mean are u sad or not sad? U don’t have all the answers? Or do? It’s a big deal..oh wait.its not, JK biggie here. Ugh!
    I mean WTH, girl. Stop writing. Ur not good at it. At all. Just be a mom. Ur a bit awkward and act autistic spectrum like urself. And def ur husband is spectrum.. so don’t u think ur kids would have a touch of kookoo too? It’s not like ur kid has cancer and a death sentence. Oh wait.. u lost a u have all the answers and u know how it feels. Well u don’t. Suck it up. Shut up. And just do what ur suppose to do. Instead of attention seeking all the time. When u lose a 10 y/ o child due to a death sentence of cancer.. then come boo hoo out in public. Until then.. stop with being so fricking crazy. Get some help. Ur insecure, egotistical, whiney, think u have all the answers, crazy ass chick.

  317. My son has PVL and CP. He (along with his brothers) is my greatest gift. He is smart, funny and absolutely perfect. We are truly blessed beyond measure to have him in our family. While it is a tough road, I could not possibly imagine life without him. He has made me a better mom and surely made us a better family.
    Good luck to you all as your navigate this journey.

  318. Meghan, you are so strong and an absolutely wonderful mother! Hart is lucky to have someone who will go above and beyond for him, you will be in my prayers!

  319. Thank you for sharing your story. My son was diagnosed with Cerebral Palsy when he was 4 1/2 years old. He favored the left side, he would army crawl, his development was delayed as well. He was born 4 weeks early and almost died if I wouldn’t of gone in the doctors when I did , he use to kick me like crazy and I got paranoid one day and went in to just make sure everything was ok and was rushed to the hospital and was told if I wouldn’t of gone in when I did he would of died by that night. I was put to sleep so I didn’t know anything till I woke up. My son swallowed his fluid , had seizures, stroke and had blood on his brain..I didn’t know about the stroke till he was 4 1/2…the doctors just told us to watch his development and even though he favored his left side I thought he was left handed like his dad and my sister and then one day his doctor told me he was stiff on one side of his body so he referred us to a physical, occupational therapist when he was 1 then a speech. My son’s father and I were not together and I worked a lot to cover the time that I missed taking him to therapy and no one ever told me till i kept getting different answers from different doctors then every time he would hit a milestone something would happen and finally I demanded answered and they sent us to Texas Scottish Rite Hospital in Dallas and they told us like we should of already known he had Cerebral Palsy. We lived in a small down in Texas and they said sometimes doctors don’t like to throw around those words “disability”..which I found really odd. I remember going back to his physical therapist and telling her and she said, i’m glad they finally told you! I blamed myself for so long..that maybe if I didn’t work so much I would of caught it earlier but now he is 12 and I had made the move to a bigger city hear Dallas to get him the best doctors and education there is. The town that I lived in, they would always say, but he looks “normal”…to me what is normal?! I thank God every day for him, his name is Matthew which of course mean Gift of God. Thank you for sharing your story, I read your story and glanced at my son and teared up and thought how lucky we are to have such blessing in our lives, each child is a blessing bur God chose us to take care of them, he knew we could handle it. I’m so glad you found out early, it is a long road but every minute is worth it. My son was 3 when he learned how to finally put his shirt on by himself I teared up with joy and that made him light up and be so proud, every little thing he does if it is learning a new word or holding a small object in his right hand he is so excited to tell me and even that makes me tear up. Ha. I pray for your and your family and I cannot thank you enough for sharing your story. It touched my heart, you have a beautiful family and you’re a great mother.

  320. I’m touched! I couldn’t stop the tears rolling down as I sit next to the love of my life who has mild Cerebral Palsy that affects the right side of his body. But all I know is I am blessed to have him by my side and every morning I feel how lucky I am. I know for a fact that your little boy would be just fine. He’s beautiful. You and your family will be in my thoughts 💕

  321. Not only are you the best advocate for your son. But someone out there is going to read this and fight harder for their child. Prayers to your family.

  322. Wow, u r being so strong for your son. I hope therapy helps him and he does not get the cerebral palsy diagnosis. If he does I know u will be able to handle it. Just remember, it’s ok to ask for help. Prayers for Hart🙏❤️

  323. You are such an exceptional mother and I think God gave you this sweet child because he knows you need each other. I wish you and your family the very best. I am truly inspired by you.

  324. Oh yes Meghan, you said that right. God doesn’t give these special people to anyone only those that are super qualified to do that wonderful thing called life.
    Hart is in good hands with you Meghan I don’t doubt you for a minute if there’s a new development or someday cure for it.
    Well I’m sure you will come up with something.
    You blessed to have Hart just cherish what time you have to make it count.
    Many prayers for you & Hart your family 🙏
    Much Love to all your beautiful babies 💋

  325. Megan
    You are in my thoughts and prayers. You are so right he is an amazing gift such a sweet boys and are your others children. By not hiding this and bringing it out you are helping so many others. I admire you and your strength


  326. I truly believe children with special needs are given to special people. You are one of those! You are so strong and I’m proud of you for jumping into action and therapy, and for not looking at this as a punishment or falling in a heap. You’re such a strong person to go through everything you’re going through and staying positive for your family. Wishing you all the best and lots of love xx

  327. My heart goes out to you and your family. He is so precious and i hope his life is filled with joy and happiness every single day!

  328. Be a bit careful what you share. I’ve raised three adopted children with varies learning disabilities. The brain does rewire through repetition, new experiences and is able to repair to some extent. I was given a doomsday prognosis for each and they all have exceeded expectations with full time jobs and are functioning adults. Were they able to go to college, no. It’s a shame, but not one college would admit them. They probably could have done it given enough support. I do think people are trying to change that now. 3 years ago admittance was only on SAT tests which these children do not test well. I had my children to a lot of specialists and the best said experience in daily life and a bunch of support from the people surrounding them is the best medicine which has worked for me. Advocate, which I know you already are. You are a mother who will believe in them which is important (disability or none).

  329. Hi Megan, God bless you and Hart. My son Ben after many tests was diagnosed with PVL as well and labeled with cP for his rigidity and to get services like speech, physical and occupational therapy. He was non verbal for many years and was delayed in many ways. He is healthy and happy and has come so far. He is 20 now and talks, walks, went to prom, works part time and everyone adores him. Hart will do great sweetie! You will be his advocate and he is loved! Sending hugs to you momma❤️

  330. Meghan, my husband and I have just recently been faced with a very similar situation – twin boys, one diagnosed with PVL. It is all of the things that you so eloquently wrote. I would do anything to alleviate any hardship that he will ultimately face but I have to keep telling myself that my strength will be his and that we will be just fine (…there are hard days too)! Sending you and every family with similar challenges endless prayers and good thoughts! ❤

  331. God blessed you with sweet Hart. I will pray for you and your family. I love your honesty and the strength of your faith through tears.

  332. Love your honesty your bravery your perspective your attitude and your hope … with this hard diagnosis. You were specifically chosen to be Hart’s mommy and that is absolute truth! What a joy and blessing it will be. Praying for you and your fam!

  333. I just read about this on People mag’s site and came straight here to make a comment. My daughter, now 24, was also diagnosed with PVL at birth. I never thought of her as “brain damaged.” That seems a bit harsh. I remember being told this may be something very minor as she gets older or something more significant. Very vague. My daughter does have cerebral palsy. It is all on her left side – from her leg to her arm. You see it in her gait. She gallops, she doesn’t run. She can’t ride a bike. She mostly keeps up with her friends. She will not be a candidate for Dancing With The Stars. In other words, life is pretty normal and her mild to moderate cerebral palsy has never slowed her down. I wish she didn’t have to deal with it, but it has made her the person she is today – a graduate student working toward her masters in social work.

    Best wishes to you. All will be fine. I promise.

  334. Your words are very meaningful. We have a son who is three years old, and has some developmental delays. With the help of physical therapy he started walking at twenty-seven months. He is now receiving Occupational Therapy to help with his fine motor skills as well as Speech Therapy. I struggled with comparing him with others and since have took a major step back to do as you said, “one step in front of the other,” one step at a time. Since doing so, we have gained so much patience and have learned so much from him. There is a lot of things that are challenging, like potty training but with patience we have reached this milestone. I love your statement that he is a gift to us! Thank you so much for your inspiring words. I pray for your continued blessings.

  335. You are a very brave woman. Keep your faith and trust in God. My son, Joshua, has been referred to the Neurologist too, because of his milestones delay. I had the same feelings, concerns and emotions that you described. God listened my prayers and it’s a miracle that my son is walking! He is in therapy now and every little progress means a lot to all of us. These beautiful angels, like your son and my Joshua, are a blessing! Hang in there! Praying for you and your beautiful family.

  336. Meghan we are you guys with a bigger kid. Diagnosed at birth he has bilateral brain damage. We were told he would never walk, talk and all the other great things they say when they need to tell you your child has a brain injury.
    I want you to know to please get all the theraspy you can as soon as you can. The infant brain is amazing at reorganizing and having areas take over for other areas……it is called plasticity.
    Anyhow just know life will be different but is incredible. The people Hart will bring into your lives will be the best friends you will ever meet. I promise you that.

  337. Meghan,
    First, let me say how proud I am of you for following your motherly instincts and not just settling for what you were told. My heart goes out to you and your family. You are definitely not alone because God is with you EVERY step of the way. I love your posts and thank you for sharing your family with us. Your kids are so cute. To look at all that Hart has achieved, without the proper diagnosis, is remarkable! He is happy and so loved. I have prayed for you since you wanted to start a family. Now, you have three (3). Isn’t God great! I will continue to pray, not just for you, but with you. You have a loving, kind spirit that will always lead you in the right direction. Hart will be just fine, especially with you as his mom. Wishing you and your family the very best.

  338. You are a very special person & Hart is a gem and this is why he was given to you; you are a true inspiration to all young mums
    God bless 🙏

  339. God bless you and your Hart. I hope for nothing more than the best for him. May God hear my prayer for him, for you, your family.

    From one Mama of 3 to another – I know that worry and struggle to navigate all to well (although it be different circumstances)… I am thinking of you and sending you strength, confidence, and peace.

    – Jaime

  340. Your son needs and deserves you. Your cheating husband does not. Take those babies and run. Once a cheater, always a cheater. I should know, I am one. Not proud of it but can’t stop…..even with therapy. Jim will cheat again.

  341. I’m so sorry that you’re dealing with all of this at one time. You are a strong woman and Hart is a very blessed little boy to have you by his side advocating for him and caring for him. Never lose faith that God can heal..spiritually, mentally, and physically. He never promised that the cross would not get heavy or that the hill would not be hard to climb. He never offered our victories without fighting but He did say that help would always come in time. So just remember when your standing in the valley, and the adversary says give in, just hold on because our Lord will show up and He will take you through the fire again. He’s faithful. Praying for you.

  342. I read this and know exactly how this feels. My boys are almost 4. Twins – one of them was the same as your son. It’s been a long road. But the body and Brian are amazing -And with therapy early and I means this —-multiple opinions and multiple specilaist he will and can change his body and brain. It’s not easy for anyone as you find therapy weekly or how to deal with everything else that will come along as he ages- every case is different on what and how a child deals with this. I can say the number one thing to do is find a intensive feeding clinic as soon as possible as they will start y’all on managed care with someone who will help your child transition in life for all phases of feeding. The site is FEEDING MATTERS- a non profit in Arizona – THEY WILL CHANGE YOUR LIFE

  343. I dont comment typically on anything but I felt I needed to. I have been a fan for a while and love how you always keep it real. I have a son with down syndrome, autism and a seizure disorder. He is also non verbal. He is 11 yrs old and boy is he the blessing we all needed in our lives and we didnt even know it. Yes i was sad and yes sometimes i still get sad but then he smiles and that changes everything. Early intervention is the best. I will continue to follow your story and wish you all the best. You are a great mama and always go with your gut you know your son the best. Someone recently said E is so lucky to have you as his mom but you know what we are the lucky ones that we were chosen to be their moms. Keep fighting for Hart and the rest will fall in place

  344. Meghan…
    First of all, I completely understand the fear of the unknown right now. My youngest son, Callan, was diagnosed with a rare congenital heart defect when I was pregnant with him. We knew that we were going to have a battle that we were wholly unprepared for. During the first few days after he was born (still in CVICU), he had complications and almost didn’t make it. Eventually, we were able to go home after 7 weeks in the hospital. After the traumatic events in the hospital, I began noticing some developmental milestones that Callan wasn’t meeting. We have the most amazing pediatrician and he quickly referred us to a neurologist and physical therapist. Because Callan’s heart was unrepaired, it was too risky to put him under anesthesia for an mri. We labeled him as having spastic (weakness left side). At 3, he had to have open heart surgery and the surgeon elected to have a brain mri done. We found out that Callan has PVL. While the diagnosis was disheartening, it allowed to to really provide Callan with what he needs. There was no way to fix it but we were able to help him manage his limitations. Our neurologist let us know that PVL can affect vision and cause seizures. Callan recently was prescribed glasses and has had one seizure; however, it was febrile and most likely not a result of the PVL.
    I wanted to share my story because even though you are overwhelmed, exhausted, heartbroken, and asking why, you are doing everything right!!
    I have been through all of these emotions and continue to feel them every time Callan trips because his left leg is weak or struggles to keep up with other 6 year olds. But despite everything, my son has the most fun-loving, sweetest personality… he’s tougher than most grown men and has a heart of gold.
    My advice is be proactive, keep advocating for Hart, and know that you will always do what is best for him!
    God Bless ❤️

  345. Meghan, I have a child with CP who is 22 years old! What I will tell you is never let anyone tell you that ur little baby won’t do certain things! We were told that my daughter would not do much of anything as she grew older. Get in there early and do all those things you are doing. Development is so important first 3 years! My daughter today has a job! Bless you and ur family! I wish I could speak with you and tell you our story! So many things to let you know! But u are right when u are chosen it is because God knows u can do it and will be the best thing that has ever happened to this beautiful baby! I wish I could reach out and hug u and tell you everything will be ok, because it will! My Hart and prayers are with you!

  346. Dear Meghan I just read about your son on the news article .

    I am sending as a student of Dr and Master Zhi Gang Sha. I know he is the only one on this earth that can help you with your son health. maybe help son have a better quality of life longer.

    He is a doctor MD< of Modern Medicine, Doctor of Traditional Chinese Medicine and Grand master of many ancient arts. He is a Divine Channel, a medical intuitive, a spiritual leader, Transformation leader.
    Although he will be in his retreat starting july 12 until end of July , his 9 centres around the world will be closed until then as many of his students will attend either in person or be webcast. You can connect by email to one of the centres as they check emails during retreat.

    watch baby zachery healing – I cant seem to find the recent videos fo baby zachery

    but these will give you idea to start you research
    read Soul Miracle healer by William Gladstone,

    wish you the best on your healing journey with your son.
    don't wait too long. After Aug 1 Master Sha is on his private time for several months.
    talk / email to a centre to find out more.

    Love Arlene

  347. You’ve got this. There is no greater love than that of a mom and child. No greater bond either. I am a NICU nurse and have seen many things in the 14 years working with babies and I can tell you moms can always sense something before anyone can. It’s nature. You are strong, and you will advocate for him probably his whole life, because you will have too. Healthcare can be tricky, and I know this because I am part of it. Stay persistent, stay demanding, stay passionate, and stay compassionate about his care. You will meet road blocks but you just need to learn the detour, and I promise your end up where Your supposed to be. Hart was given to you and Jimmy because he has a plan for all of you, together. I pray the road, as it may seem long, leads you to see all the awesome that Hart is.

  348. Hi Meghan. I read your blog and know this all too well. My son has severed PVL and white matter brain damage on both sides, so I can relate to all of this. He is also a twin. We have similar stories and Hart’s physical issues sound just like my son’s. If you ever want anyone to talk to—please let me know. I have found it very cathartic to speak with other special needs mamas who I can relate to on such a special level, that even some of my mama friends can’t relate to bc they just don’t have babies with special needs. My son is a few months behind yours, so they aren’t too far apart in age. I’m here for you mama. I see you. I see your pain, and I too experience it still. But I also know the joy these special little souls bring to our lives. Please reach out to me if you ever need to talk or vent or cry or make a new special needs mama friend. We all need each other.

  349. Prayers sent to you and your family. I’m a special education teacher who works with students who have many challenges (CP), please know that children are remarkable and will adapt to challenges in their own way. I’m praying for you. Stay positive.

  350. Megan,

    I left a story for you but I posted under “I’m sad”. My heart goes out to you and I wanted to share it with you to give some hope. My son was diagnosed with bilateral PVL as well. I hope you read it cuz I think it’ll help you some. Take care,


  351. Hi Meghan, my name is Agnes I currently live in Overland Park, KS. You have a beautiful family. Hart is adorable and sweet. Your path is God’s intention. I have a son with differbilities as I opposed to the term “special needs”. My son’s name is Troy. He’s a twin to Nathan. I had them at 26 weeks. My son Troy was diagnosed with Cerebral Palsy btween 8 and 12 months. My son’s start to life was challenging, heartbreaking, but I had faith in God and my husband. Hart is surrounded by God’s hands and a loving family. I believe My son was created in God’s likeness and he trusted my son’s care in my hands what a special gift and how honored I was and still am to witness how much my son has overcome. I’m praying for your son Hart and for you and your husbands strength. Rejoice in God no matter the circumstances. I believe God is intentional in everything and in every situation. God knows you will care for Hart and it comes to show God was nudging you and you went with your instincts that something was different with your Hart. The strength of being a mother! Through God’s Grace. Wishing Hart, yourself and your entire family God’s peace and happiness regardless of the current circumstances or what’s to come. Stay strong in everything! God’s got your son, you and your family in his hands trust in him and never lose faith or hope in Christ.
    God’s Blessings

  352. Thank you for being so real and sharing. He is a darling boy and I know God will direct your path. I know you know this but…God does not make mistakes. From a friend in Ohio❤️

  353. Bless you Mama! I’m very curious about your mention of believing something happened a couple months before he was born. I won’t go into it here further because people will lose their minds but I’m really curious if you’re saying what I think you might be saying. I’ve been a mother of an injured child for 15 years now & my heart goes out to you. He’s a beautiful baby and so blessed to be your child.

  354. Hart has always tugged at my heart in a different way than any other baby. This is a beautifully said piece. Will continue my prayers for sweet Hart, your family, and pray every door you’ve needed or will need opened will be open. Bless you.

  355. My son has severe ASD and my daughter has ASD, ADHD, GAD, CP and epilepsy. Life can be tough, but it’s all worth it to have them. We were meant for them. I’m a fighter, always have been, I take comfort in the fact that God must have known we would never stop. You’ll be fine, Hart will go the furthest he was ever meant to go with you by his side. Much love, welcome to Holland!

  356. Meghan, I will pray for you, your son, and your family tonight. I will ask the Lord to lay His hand on your child. You truly are bless. But also, your beautiful child is blessed as well to have a mommy like you. Please remember that things always get better.

  357. You need to get in contact with Dr. Janice Brunstrom-Hernandez. She is the neurologist that ran the CP Center at St. Louis Children’s Hospital but is now running a CP Center in the Dallas area. She is not only a CP specialist, she has CP. she has an understanding of what these special kids are and can be capable of. My step son has CP and I met Dr. Jan when we attended St. Louis Family Church. She is truly an outstanding Christian woman that God has used to help so many kids do things that their parents never thought could be possible. Prayers and Blessings to your family.

  358. Hart could not have been born to a more fitting mother. As a friend told me when my daughter was born…….YOU GOT THIS! Some days will be more difficult than others, some nights more sleepless than you would like.

    When things do get tough just remember. You are little Hart’s world. You are the sun that brightens his day. You are the moon that let’s him sleep ever so peacefully.

  359. As a parent of a special needs child, I can tell you, as many others will & perhaps already have, that you are blessed beyond your wildest imagination. Yes, you were chosen. Yes, it will be challenging & yes there won’t be anything you’re not willing to do to help him. The little things will be very important & the tiniest accomplishments that others take for granted will fill you with so much joy & love.. more than you ever knew was possible. I was told many years ago that God gives special children to special people. xo

  360. Dear Meghan. I am writing to you from Canada. I am a Nicu nurse and fully understand the diagnosis. First always trust your mother instincts. You are his mother and you know him best. The medical system can be frustrating and it is not easy to be placated or dismissed. I feel your love for your son and I know he has the best Mom. You are gift to him and he is a gift to you. My heart goes out to you every mom wants only the best for there child. I love that you feel blessed no matter what. Your life will be filled with challenges but God is with you. God does not make accidents or mistakes. My Aunt once said “God never gives you more than you can handle” I struggle with that statement at times when I just wonder why. God knew you would be the perfect Mom for Hart. I will pray for you and your family. Stay Strong. Don’t forget to take care of your self.

  361. My heart goes out to you. My oldest son, who is now 36 yrs old was born seemingly normal but was diagnosed at 6 months old with congenital CMV. (cytomegalovirus) There was no internet back then, so our hopes were that he would ‘out grow’ his delays. My suggestion is to get as much therapy as your little one can handle and take what the doctors tell you with a grain of salt. They don’t know the outcome!!! Take one day at a time, celebrate his successes and love him unconditionally. You will become a stronger person and everyone that has the opportunity to meet him will be touched. Good luck to you as you start this journey.

  362. You are brave beyond on measure. Your faith and positive will carry you through it all- Everything! Blessings to you, and your family for strength and positivity ❤🙏❤

  363. People always told me “God Never Gives You More Than U Can Handle “

    Stay positive , trust me I know how hard that can be !

  364. I now exacly how you feel! I have a boy with cp and something called primar microcefali, corpus callosum. But I feel like like you, we where cousen to be his parents from God. We love him as he is and always going to do the best for him! He is our little hero!!! Sorry for all missspelling but I’m riting to you from Sweden so I hope you understand what I write😂
    Remember you are the best mom you
    ever can be and you children are blessed to have you as you mother ❤️❤️❤️❤️
    Love from Iwona and little Silas😍

  365. My heart hurts for you and I can so understand your pain. My daughter (also a twin), now 21, was diagnosed with autism at 2 1/2. Those weeks after the initial diagnosis were like living underwater. I was overwhelmed and haunted by all the “she will never…” There is a very strange grieving process to parenting a child with a disability. I would like to share a few things with you that I have learned…
    1. Your son is the same boy he was the day before he was diagnosed. He is the same miracle of a boy. You have now received a diagnosis and the purpose of that is to create a map in order to get him the best services based on his disability, but that diagnosis does not change who he is – a miracle. Your baby and your heart.
    2. I took my daughter to one of the leading experts on autism in our area. I sat sobbing and begging for help. He asked my mom to take my daughter out of the room so he could talk to me. He looked at me and said, “How do you expect your daughter to improve if you are unwilling to help yourself?” He instructed me to see my own GP and seek out help for my own anxiety and depression. As they say on planes, put the oxygen mask on yourself then assist your seatmate! Same applies here! Do whatever you need to help yourself so that you can be the best mom necessary to help your son.
    3. Make time for all your kids! My daughter’s twin brother got dragged to ST and OT and various therapies over the years. I had to remind myself that I needed to spend time with him that was related to his sister’s needs. He is now a college athlete pursuing a degree in sports psychology.
    4. You will now find your true friends. Many people in your life will not understand and never relate to your situation. That is ok. I promise you will find other moms who will just know. They will sit with you. They will bring you a cup of coffee. They will listen without judgement. They will be your part of your inner circle.
    5. One day, you will look back and realize how far your boy has come. My daughter didn’t speak her first sentence until she was 6 when after a therapy sentence she ran up to her twin and yelled “Jacob, chase me!” All the things I believed she would never do, she did. She just did them on her terms. She went to school dances. She sang in her school choir. She played the flute. She even became a cheerleader on her high school squad. She is now a high school graduate (Magna Cum Laude) and works at a local bakery. Her path is very different from her twin’s, but no less exciting and fulfilling.
    You are not alone! There are so many moms out there who can relate. Share your story. XOXO!!!

  366. You got this! We have you! Prayers being lifted up in Hart’s name and for you! Prayers for strength and peace ! 🙏❤️

  367. Meghan, you are such an eloquent writer. It takes an abundance of courage to advocate for your children as you did for Hart. Hart will move mountains with the love and support of your family, you are right—he is a beautiful blessing. My sister has special needs so I know first hand just how incredible a journey it is, from diagnosis to living an adult life with fullness. Sending prayers that you feel strength in navigating your new normal!

  368. I was you about 6 years ago. Moms always know their babies the best. My son is autistic and it was subtle as a baby but surely ever present. I was ignored and reassured until I demanded further testing. I was right. You are right. You are his advocate and the more therapy/intervention he receives the better. Good for you! I wish I could hug the me 6 years ago and you now. I do know how you feel. Let me tell you this though. Because of all of the early intervention, my son Wilson who is now 7, is doing so well. He is in a regular class and scored the highest on his first grade standardized testing. He has lots of friends and is loved by everyone he meets. He has been such a blessing to us and has made us into better people. Keep advocating for Hart and remember that mother really does know best.

  369. You may be the strongest woman on the planet. Prayers for you and your family Meghan. You got this. Hart is a lucky little boy to have such a warrior for a mother.

  370. Meghan,
    If you aren’t already an avid listener of Joel Osteen I implore you to start. He frequently tells the story of his sister who was born with something like Cerebral Palsy… she is an associate pastor at Lakewood Church now. No sign of aforementioned condition. Best wishes to you and your beautiful family.

  371. Meghan your little Man has been through it …I pray you as a Mother are blessed ..This little child of god will be in my prayers .🙏🙏🙏

  372. Megan, my 17 year old boy went through the exact same thing as your son. He was diagnosed with a mild form of CP. I don’t love him any less. I love him more!!!! It’s a hard diagnosis to understand and wrap your head around. I remember when our in house physical therapist asked me early on what my biggest fear was. And I sat there with tears streaming down my face and said, that my child has CP. we have learned to deal with the ups and downs of his diagnosis. He’s a pretty remarkable kid!!!! He’s my hero!

  373. Hi Meghan, I too have a child with CP and PVL. Her name is Carissa and she is the biggest blessing I’ve ever known. However, life has not been without its stress and challenges. She is doing better everyday and will be celebrating her 10th birthday in a few weeks. Along our journey, we discovered a very special person who might be helpful to you. Early intervention is KEY! His name is doctor Jason Hao and he works out of Santa Fe, NM. His specialty is neuroacupucture. He has a gift that is very special and he helps thousands of people every year including, children, elderly, patients with TBI and vertebrae’s with phantom limb. He might even be able to help with the eye alignment. You need to spend 4-5 days at a time each visit so it’s time consuming and as a working mother, we cannot go enough to help-we live in Texas. However, having more resources, I thought you might look into him for your sweet boy. There is so much you can do to change your boy’s potential. Don’t wait! From one mom to another💕

  374. My grand daughter is just about 4 years old. She also has PVL and sounds so much like your son. I wish we could contact you to share our experience. Maybe we could help each other and share tears of happiness, joy, sadness, and disappointment. My daughter knew right away, just like you, that something was wrong but no doctor believed her. Until she had a seizure that forced the MRI, the doctors did not believe her. We live in Omaha,Nebraska and are receiving speech and physical therapy in Gretna, NE.

  375. My beautiful boy now 18 years old JP was diagnosed before he left NICU .
    We started with therapy the day after , with 4 years old i moved to UK for starting in Conductive Education School .
    After a lot of battle , he is brilliant student , we still fighting now for looking for an University that accept Special Needs Students .
    He is beautiful, brilliant and loved . A blessed at our lives .
    He took me in the last 18 years to know brilliant people , loved human being in several countries.
    Trust me its a bless ! God not give us what we can’t take and care .
    Im available for all doubts and experience that i had in the lasts 18 years .
    Trust you are a special person

  376. Hello! Your twins are adorable. My son was born with PVL which ultimately led to a CP diagnosis. He also was born with a virus called Congenital Cytommrgalovirus. I urge you to look into this and have your sweet Hart’s hearing tested every 3 months. My son is doing amazing and with the proper early intervention, Hart will as well! Keep your head up!

  377. My son has a form of PVL…Contact W. Bruce Cherny, MD – St. Luke’s Hospital in Boise. ID….He doesnt just go to conventions he teaches them and every Dr. my son has ever had, HAS HAD AT LEAST ONE OF HIS BOOKS IN THEIR OFFICE… Even my daughters psychologist has his book. Also whenever he gets a new Dr. they usually always confir with Dr. Cherney about my son… He Is former Lead Physician at Arizona Spine and Brain Institute.

  378. Youhave been giving a blessing, hard as that may seem, you are a force that can handle this You have a beautiful family that will provide laughter ,tears, sloppy kisses and the most unwavering support. Stay strong you got this !!

  379. I’m a special education teacher and wanted to share this with you.


    Emily Perl Kingsley.

    c1987 by Emily Perl Kingsley. All rights reserved

    I am often asked to describe the experience of raising a child with a disability – to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It’s like this……

    When you’re going to have a baby, it’s like planning a fabulous vacation trip – to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It’s all very exciting.

    After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, “Welcome to Holland.”

    “Holland?!?” you say. “What do you mean Holland?? I signed up for Italy! I’m supposed to be in Italy. All my life I’ve dreamed of going to Italy.”

    But there’s been a change in the flight plan. They’ve landed in Holland and there you must stay.

    The important thing is that they haven’t taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It’s just a different place.

    So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

    It’s just a different place. It’s slower-paced than Italy, less flashy than Italy. But after you’ve been there for a while and you catch your breath, you look around…. and you begin to notice that Holland has windmills….and Holland has tulips. Holland even has Rembrandts.

    But everyone you know is busy coming and going from Italy… and they’re all bragging about what a wonderful time they had there. And for the rest of your life, you will say “Yes, that’s where I was supposed to go. That’s what I had planned.”

    And the pain of that will never, ever, ever, ever go away… because the loss of that dream is a very very significant loss.

    But… if you spend your life mourning the fact that you didn’t get to Italy, you may never be free to enjoy the very special, the very lovely things … about Holland.

  380. You said Jimmy was surprised?? With his busy schedule, how much time does he spend with the kids?? You are a wonderful Mom to your babies👏

  381. You are such an elegant writer. I’m so sorry about Hart but with you as his Mommy he can’t go wrong 🙏❤️

  382. Your family is blessed to have you. You are maybe smarter than you know. Call it mothers intuition. Your attitude is a blessing for helping navigate thru this journey. Wishing you strength and blessings ahead.

  383. “God, you’re talking to me. I hear you. Let’s do this. All of it.” God can and will walk you ( and Hart and the entire family) through this, WHEN you put Him first… first in your own life, first before Jimmy, first before your children . Matthew 6:31-33; 6: 19-21; Galatians 2:20; John 3:30; Colossians 3:1-4; Romans 8:5; Matthew 22:37; 1 Corinthians 10:13; Philippians 4:13; John 15:5; Proverbs 3:1-35.
    Esther 4:14 “…..And who knows whether you have not come to the kingdom for such a time as this?” Meghan… this is why we are here…to honor and glorify God and He has given you Hart for the world to witness your faith unfold as you mother this little boy!!! How exciting what you get to do as the world watches!!

  384. So sorry to hear about your son Hart. You said you were blessed and indeed you are. But Hart and the rest of your children are blessed as well. In my prayers. I know that God will give you strength!

  385. Oh Meghan, you are going into the journey with such a beautiful open heart. I have been on this leg of your journey; endless tests leading to a diagnoses of left hemispheric cerebral palsy (porencephaly) for my littlest guy. Although he developed the condition at 7 months old after an infection. But the good news? He is the absolute sunshine in our lives and the glue for my little family. We have an amazing tribe of physical therapists, occupational therapists, speech therapists and are set to begin the NAPA Center this year, and are starting hippotherapy. Also he miraculously appears to be cognitively unaffected. This was not the journey I expected, but I have felt love and pride that I never knew existed. I love all of my children equally – but the journey of a special needs mother is a different adventure. Prayers and love to you.

  386. Prayers for your precious Hart. I had a son that was a quadriplegic due to an MVA. I did exactly what you said and listened to God….and put one foot in front of the other….one day at a time. Prayers for mama and family as well.

  387. I am sorry for what you and your family are going through, I have followed you since the housewives you a very strong person amd you both are great parents, god only gives us what we can handle. My prayers are with you and your family.

  388. Please don’t worry my father had issues and he has overcome all of them they told him he could never drive because he was a twin and he was caught underneath of her rib cage and he lost oxygen to the brain they told him he could never have kids I’m here they told him he could never drive a car told him he could never walk properly they told him he could never drive a stick shift he does all of it he’s very capable of doing everything everyone else can he talks a little different but he’s been made fun of his whole life but he stronger than anybody I know .

  389. God Bless you and little precious Hart! You’re an amazing mother to all your children and I know Hart will be just fine. He is surrounded by his loving family who will give him the help and support he needs. Keep doing what you’re doing Meghan and God will handle the rest!


    c1987 by Emily Perl Kingsley. All rights reserved

    I am often asked to describe the experience of raising a child with a disability – to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It’s like this……

    When you’re going to have a baby, it’s like planning a fabulous vacation trip – to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It’s all very exciting.

    After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, “Welcome to Holland.”

    “Holland?!?” you say. “What do you mean Holland?? I signed up for Italy! I’m supposed to be in Italy. All my life I’ve dreamed of going to Italy.”

    But there’s been a change in the flight plan. They’ve landed in Holland and there you must stay.

    The important thing is that they haven’t taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It’s just a different place.

    So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

    It’s just a different place. It’s slower-paced than Italy, less flashy than Italy. But after you’ve been there for a while and you catch your breath, you look around…. and you begin to notice that Holland has windmills….and Holland has tulips. Holland even has Rembrandts.

    But everyone you know is busy coming and going from Italy… and they’re all bragging about what a wonderful time they had there. And for the rest of your life, you will say “Yes, that’s where I was supposed to go. That’s what I had planned.”

    And the pain of that will never, ever, ever, ever go away… because the loss of that dream is a very very significant loss.

    But… if you spend your life mourning the fact that you didn’t get to Italy, you may never be free to enjoy the very special, the very lovely things … about Holland.

  391. Mothers intuition!! You are a true fighter for your beloved son!! God Bless you and your babies.❤️

  392. Meghan and Jim, I am sorry about the diagnosis. It is amazing how a Mother can “just tell/feel” that there is something wrong with their child!!
    We just have that instinct.
    Now is the time for both of you to put aside your issues. Kids sense when something is going on in the house. Be nice, be friendly, be sweet. I know it is hard. I have been there done that. I didn’t take my own advice. I bad mouthed their dad. That was so very wrong.
    You already know you have 3 precious children that need both of you in their lives. Be strong for them.
    Pray together to get through this initial shock. Always pray together! God loves you and He is looking out for your sweet baby Hart and both of you!

  393. Your simply an amazing gift to Hart! Mom’s just know when something isn’t right with their children so your awesome for your fight in finding an answer! We serve an awesome God and He has you and Hart right in His mighty hands!

  394. I have nothing but the utmost respect for you! You are blessed and that you can see and understand that is amazing and a wonderful gift. Challenges give us grit and make us see the good that surrounds us everyday. I see you and I hear you Meghan King Edwards.

  395. My heart cries for you as a mother and grandmother. All we want is our kids to be healthy. Hart is so lucky to have a mom who didn’t take no for an answer, when she knew something wasn’t right. Prayers for continued healing

  396. You are not a lone. My son receiver a very similar diagnosis when he was a 2 year old. He is now a 21 year old college senior who spent his entire junior year studying in Paris.

    I’m not going to sugar coat it. It is up to you to see that he gets the help he needs and to be a part of the therapy. He will need to be a main priority. My goal was to make my son as mobile as possible and to get him ready for life when he won’t have me to rely on.

    I know how emotionally difficult this can be. You can do this.

    Davis’s mom,

  397. I read your story online and was so touched that I found your blog to read the whole story. I am just so impressed that you listened to your intuition and advocated so well for your beautiful boy. He is clearly in very good hands.

    Sending you and your family love and best wishes. And again, way to go, Mama.

  398. Meghan,

    You make me want to be a better mother and my kids are almost grown. You’re stronger than dirt, gorgeous, funny and so deserving of happines and GREAT love. I don’t know you and young know me so this may sound strange but I’m praying for you and you are blessed and we are for your sharing so much with courage.


  399. You can do stem cells for PVL or even hyperbaric chamber. Look into going to panama for stem cells is probably the best and fastest results

  400. Much respect for you in sharing your family’s story.
    You explained this in such a transparent beautiful way.

  401. God picked a very special mommy for Hart. I will pray for you on this journey!

    Tricia Dodson

  402. My younger son received services through Missour’s First Steps Program. He has right sided Hemiplegia and some other bio-neurological challenges. Remember you are not alone in this journey Meghan. Thank you for sharing your story.

  403. I can’t thank you enough for sharing your story. It resonated so much with me that I felt compelled to write to you. We’ve been on a similar journey with my oldest son, Oscar, for about 2 years. I too had a gut feeling that something wasn’t right, but was dismissed by his pediatrician and even other experienced mothers. At a year old he was slightly behind some of his milestones but everything was still “within the normal range.” I had to push hard to see specialists and to get the additional evaluations he needed. And an MRI at 18 months old confirmed he also had mild to moderate PVL. I had never even heard of this and have been diligently educating myself and getting as many resources as possible for my son. Our biggest challenge right now is speech and communication but we are doing several therapies, traditional and alternative to help him. We remain hopeful but there are daily struggles as you know. But Oscar is my special angel and I know I was meant to be his mamma. I just wanted to thank you because often time this journey is a lonely one, particularly because so few people know about or understand PVL. I wish you the best with Hart and your beautiful family.

  404. Your words are so touching. And so brave.
    I admire your ability to not only speak your feelings but to be able to give the reader a true picture of what you are going through.
    I pray that God will give you the resources to help little Hart.

  405. My child is 26 months and has white brain matter damage (has been compared to periventricular leukomalacia). I left my career and manage all of his needs. He has a visual therapist, 2 occupational therapists (one via Missouri First Steps and hands down she is the best one yet, surprising for a state run program!), 2 physical therapists, 1 speech therapist and an aquatic therapist. This doesn’t include all of his other medical team (GI, neurologists, rehab). Read up on neural plasticity.
    This baby will be FINE, it’s you, the parents that need to come to terms with all of this. I still cry and I am still scared (and that’s OK, that’s understandable) but you push that aside and you put your game face on because that’s what you have to do. You have no other choice. Each milestone will be a fight and warrant major celebration. I didn’t realize how easy I had it with my other child until I had this baby. Good luck, rest up and feel all of the feelings.

  406. Your a fabulous mother! Your strength will walk you through this. Hart is a gorgeous little boy and deserves all the love showered upon him. Many blessings for lovely journey together. Every child is precious to his mother.

  407. Hi Meghan! I started watching RHOC when you joined them, not knowing anything about you, but basically because I have been a fan of Jim Edmonds for years. “Jimmy Ballgame, Hollywood” etc. I watched the show and was somewhat shocked at the comment you made to Lydia (I think that’s who it was) during one of the reunion shows about her using her brain instead of the Bible. That bothered me and I stopped following you on Instagram and actually stopped watching RHOC as well. I’m a firm believer in the power of prayer, the words of the scripture and my relationship with God. Then I started following you again with your pregnancy with the twins (as my profession is an RN in obstetrics and I have worked labor and delivery for almost 27 years). I have followed you and read some of your blog posts and observed your Instagram photos. I can’t say I know what you are experiencing with the diagnosis you have been given regarding your son and then the heartache you have been experiencing with your relationship with your husband, BUT I am so happy that you have mentioned God and how you are putting your trust in your faith. I read the pain in your blog and I just get compelled to write you and tell you that your faith will get you through dark days because it has for me. God Bless You and your sweet family. You have a fan in Murray, KY
    Kathy Erwin

  408. Hi Meghan
    I knew early on something was wrong with my baby boy. Finally at 1 1/2 yrs old he was diagnosed with being deaf in his right ear & has mild autism. When the doctors told us he would never speak, ride a bike, drive a car, graduate, or get a job and that he would always live with us. I got trained to do speech therapy I worked at it everyday with him & everything else he needed help with. Now my son is 27 years he drives a car, has a job, lives in Victoria B.C. in a bachelor suite. We live in Campbell River B.C. which is 3 hours away. I’m so proud of the man he has become & he thanks everyday me for the hard work I do to help him.
    Now my daughter had a baby girl a year ago that was born deaf. She just had surgery a month ago she got cochlear implants. The cochlear implants will turned on next week and she will be hearing for the first time.
    So we always have HOPE keep going.

  409. Girlfriend, you are the shit!!! Sorry for the language but you are doing all the right things. You are fighting for your child. So many people would be discouraged from pushing for what you did. I am so proud and excited for you both! You are so right that he was a gift and you a gift to him! It gives me chills to read this in all of the different ways. I’m sad, disappointed( in the healthcare system that supposed to keep us all healthy) and EXCITED. You all have so much ahead of you good, bad and otherwise BUT you have the voice and gumption to do what it takes! From and pediatric health care provider and early interventionist I am so so proud of the work you’ve done and I can’t commend you and your instincts enough! YOU GO GIRL!

  410. I commend you for publicly sharing the situation with your son. Hopefully your honest and sincere approach will help many other parents out there to get the help they need for their children. Keep posting as you are helping so many women. Be strong!

  411. Megan you don’t know me but I know your husband and his father. I am a physical therapist who lives in Texas and my wife is a pediatric physical therapist who is taught at the University in the Nuro program. Our prayers will always be with you because I know this is very hard but I really appreciate the words you put down on your blog my name is Marty. Stajduhar and my email is Marty. peace be with you

  412. We don’t know each other and I’m no one special, but you are special. You babies are so fortunate to have you as their mother. I can see that your will be a mother of great strength and wisdom. I’m so glad you followed your gut feelings and continued to pursue other doctors and other tests. It’s not that you wanted something to be wrong but that you knew something was wrong. Now that you know what you are dealing with you can provide the best care and treatment for Hart. I’m sure there will be difficult days to come; however, I know that when you have your door open (not literally), there will always be someone to listen and provide you with emotional support. Take care of yourself. Best wishes always.

  413. some info i found that might help your son……………..

    medical cannabis oil + 20 grams of omega 3 daily helped severe brain trauma patients repair their brains

    (hyperbaric) oxygen therapy – helped a young girl who almost drowned to recover almost 100% from severe brain damage (Dr Harch has a youtube channel)

    phosphatidylserine (bonded with DHA) (crucial for memory, rejuvenate brain cells)

    Vinpocetine (40mg) – side-effect-free natural wonder enhances cerebral blood flow by 25% in 30min
    (In a study, 42 elderly patients took vinpocetine, 30 mg a day at first, then 15 mg a day. After 90 days,

    these seniors saw huge improvements in every single test of memory and brain function)

    homocysteine and brain shrinkage – high doses of B-6, B-12 and folic acid see 30% less brain shrinkage

    Ginkgo Biloba, Phosphatidylcholine (Lecithin) – a major structural component of cerebral cells, lecithin is vital for supplying the ‘raw materials’ your brain needs

    DMAE – boost acetylcholine, memory-enhancing and improves communication between the brain’s two halves.

    Trimethylglycine (TMG) – plays a pivotal role in respiratory and energy production, enhances blood’s absorption of oxygen and protects the liver from toxins, and reduce blood-borne homocysteine levels for heart health.

    Pantothenic Acid – absolutely crucial in aiding your body in production of intelligence-boosting neurotransmitter, acetylcholine.

    GABA (gamma-aminobutyric acid) – help regulate brain and nerve cell functioning, prevents overloads in neural pathways

    N-Acetyl-L-Tyrosine – precursor to neurotransmitters (L-dopa and norepinephrine) that are vital for mental functioning

    Citicoline –

    acetyl-L Carnitine

  414. My heart goes out to you. I had a similar situation with my daughter. I knew, I just knew. Doctors said I was too concerned she was fine. She didn’t meet milestones timely. Finally at 3, we found a new pediatrician who listened. I too cried when we had the elective MRI under anesthesia.

    She was diagnosed with CP. We started therapy. Fortunately, hers was mild and the deficiencies we noticed never got any worse. She was delayed but eventually caught up. It hasn’t been easy. – she has dyslexia and other learning differences. She’s can be a little awkward. But today she is 23 and a senior at a major university. She is studying to be a special Ed teacher- she wants to help kids who struggle like she did.

    All of this to tell you- no one is a better advocate for your child than you! You have already started the fight and listened to your gut. Keep doing that! Also, you are right- God chose you to be Hart’s mom because he is special and so are you. He knew you could handle his differences and mold him into the best person he can be. It won’t be easy but it will be worth it!

  415. Sobbing , tears of joy and heartache as I read this. You are such a gift and so is your boy. Blessings to you all

  416. Meghan,
    Thank you for putting Hart’s and your story out there. You are absolutely BLESSED, God tried to entrust those with strength and character to take on a child with special needs. I recently learned about this as my very good friend Ashley’s daughter, Angelina, went to heaven at 19 months of age. Ashley, as you did, had to advocate like a mother to eventually get a diagnosis for daughter. Eventually at 7 months of age she was diagnosed with Leigh Syndrome. Ashley has continued since April (when Angie joined the other Angels) to advocate a speak for those who cannot speak for themselves, to work towards support for those going through the same issues, to be listened too. So, thank you, please keep sharing because that is how we learn and that is how we change what we do in the future, to hopefully make the world Hart grows up in a better place.

  417. I was going to start with “I’m so sorry” but quickly felt that inappropriate. I know God blessed Hart to give him the Mommy he did and he couldn’t be in better hands, as he walks through life. As a Mother, I pray your baby boy will not only be ok but he will flourish. I love how you raise your sweet babies, each one is such a blessing. God Bless you Meghan and your family.

  418. Thank you for sharing…about Hart diagnosis…a mother’s heart and how a mom fought for her child. You are a warrior and you are brave! Hart is lucky to have you as a mom, as well as each of you kids! A verse that has helped me is Ex. 14:14. The Lord shall fight for you and you shall peace. Blessings!

  419. Your children have been blessed with an extraordinary brave and strong mother! I use to work with children with special needs. I hope you will find comfort in support groups with parents of similar circumstances that work as advocates for their children. You have already shown you are a great advocate for your children by insisting on further tests when the so called “professionals” said he was fine. Soldier on Megan, you got this sista!!!!!!!!!!

  420. Your beautiful words…..your faith and your love for your boy are an inspiration. Bless you and your family

  421. My thoughts and prayers are with you. My 9 month old daughter had a seizure at 9 months and an MRI followed. She was diagnosed with PVL at 11 months. I had a c-section at 34 weeks due to cord issues and lack of movement. She was set up with early intervention and now has an IEP. She was delayed with walking, but the therapy really helped. She still has balance issues and could be faced with learning disabilities. I just take it one day at at time.

  422. Very well written, Especially at this time with all the other things that you have going on in your marriage, your children are the most important to you and I could think of was if you and your family

  423. What a beautiful perspective. Well written and true. Thank you for sharing. God bless you and Hart. He is with you.

  424. Hello Megan,
    I understand what you are experiencing. My daughter has two sons who are autistic. One mildly and the other one severe. They are not twins. She also has a daughter that is delayed mentally by 4 years. Her other two children are fine, they suffer from anxiety but they are being treated. She never knows what the day will bring. She has to be creative with her 5 year old daily in order to take care of his grooming needs and earring. He is still refusing potty training but she gets creative. It is beyond a full-time job that she can not obtain outside work. Her reward is seeing their milestones and feeling like they are one more step closer to take care of themselves one day. Doesn’t look good for the 5 yr old but she is not so discounting that. I recommend you join a group to help you understand what Hart is going through and get great ideas from other parents. My daughter has 4 different therapists come to her house 5 days a week. They all have different specialization and her insurance pays for these visits. You did and are doing the right thing for your child. Don’t take it personally. We cannot do anything any better than what we did while carrying our children inside of us. My husband has twin Uncle and Aunt. The Uncle was normal. The Aunt developed cerebral palsy at birth. A person who does not know her will struggle to understand her speech but when you know her you understand. I had to learn. Her face comforts and she has rigidity and jerky movements. She married, has two normal developed children and she did a beautiful job with them. Her husband is mentally delayed and this did not stop them from moving on. Hart will be the best he can be because of you. My prayers for you. Don’t beat yourself up. You are right, God knows you can take care of this angel you were blessed with God Bless all of you. You have been in my prayers and you still are as well as your family.

  425. You are right Meghan. Moms of special needs children form a deeper bond than those of others.
    Hart is just a child with special needs. Lean on your faith when you need strength, as it will sustain you. Don’t worry about things in the future. My mom used to tell me that “worry is interest paid on trouble before it’s due” and she was right. You’ve got this😉
    Much ❤️

  426. You are such a good mother and you have such an amazing Godly view. I admire it and you! You impress me and God has definitely impacted your thoughts. I will pray for baby Hart. Your’e totally right, it is a gift. You have gorgeous kids and deserve all the happiness and blessings God has to give. I live in Newport Beach and I go to Mariners church. Having God in your life is completely the way to go! Your husband and kids are so blessed to have such a loving mother! ❤️🙏

  427. Thank you so much for sharing such an emotional and personal part of your life. As you said, it is truly a blessing and I commend you for writing about it and sharing your experience. You are an amazing mother looking out for her children. May God bless you and give you all the strength that you will need to continue to help your adorable baby boy. #yougotthis

  428. Many brain injuries as well as cerebral palsy are birth injuries also you do not develop cerebral palsy over time, these are not in vitro injuries the hospital may be saying it happened in the womb but highly unlikely do not accept that without a full investigation.

  429. Your son is a gift from God and I will keep him in my prayers. Your a wonderful, kind, loving and brave woman and you were blessed to have Hart! Never give up and always have faith!

  430. This is so heartbreaking, as a mother I can only imagine the grief and and helplessness you must be feeling, especially on the back of the challenges that you and your husband have been going through. From Australia, I send my love and have included you in my prayers xx

  431. Hi Meghan,

    Look at Snowdrop for Brain injured children.
    Therapist Andrew Brereton is amazing.
    Based in Devon, England but he does an overseas programme where you would have a tailored therapy for Hart and you can Skype.

    My email is seen to you in here if you wish anymore information.

    Best wishes
    Angela, Scotland

  432. My heart goes out to you and your family. Problems and issues are hard enough to deal with, but to have them exacerbated by your being a public figure has to make things that much harder. Prayers for you, your son and your relationship. And big Bubba hugs.

  433. Meghan , just know I have been praying for you during your many struggles and I got “God bumps” after I read the end of this post after having you on my mind and heart and in my prayers . For only reasons God knows, I kept lifting you up in prayer. So, Yes, He is listening and loving on all of you . Prayers continue .

  434. This is not an e-mail, or not intended to be one.
    I left you a post on a different page underneath one of his photo that you had posted.
    Everyone has Challenges, Everyone has Special Needs. The only difference, is what those needs are, how we accept and adjust to those needs. That dictates the quality of our lives, and to the lives who’s lives we touch. Remember the famous saying that says, it’s not important that we fall, only how we rise after we fall.
    Family and Love are the True Miracles of Everyday, to day Life.
    Challenges, will always exist, persist.
    Like climbing a mountain, you don’t climb half the way, you have to enjoy the unexpected joys on the way to our destination. The climb may be hard, the climb may be difficult, the end result and the beauty of the moment will be preserved in our mind. Nothing that is worth having or is worth achieving has never been easy to obtain, that is part of what makes up the value and what makes it special and worth having and worth the hard work to achieve it. Sometimes, we take the everyday, ordinary Miracles a little for granted. Some Challenges present themselves so we have to slow down, enjoy the simple achievements and recognize the Miracles that are happening everyday, every minute, to each and everyone if us. The air we breath in and out, that fills our lungs is a Miracle, a Miracle that some don’t experience for very long or without some assistance. Then, in that moment, the Miracle is found in the Air but the Assistance that makes it possible.
    I want you and your darling little family, to know that you are never alone. I also hope that you can feel the Love that being sent your way, for you, your family, all of your loved ones. We all need each other, in this big, old world. None of us can make it through this life without the assistance of someone helping each and everyone of us, with our own mountains to climb and our own Special Needs.

  435. Sorry for the news about your new challenge. God has a plan and will lead you the way. Stay strong in your faith. You are a strong Momma I can tell in your writings.

  436. Please know you’re being prayed for, for strength and resilience every day! There are good fans out there that want great things for you. Stay strong! The good news is that it’s the only option you’ve got!! A woman is like a tea bag – you can’t tell how strong she is until you put her in hot water. – Eleanor Roosevelt
    That has gotten me through some moments!

  437. Hi Meghan!
    Wow reading your blog is like reading my path with my son about 10 years ago. He also has PVL and we have walked a very similar road.
    And I love how you ended your blog- Hart IS a blessing. Your whole family will be blessed by him and learn so much about true JOY life can bring. Good job for immediately enrolling him in therapy, early intervention is the key.
    Your road the past few months has been hard, with several areas in your life. I remember our road with the diagnosis very vividly, one that will change you. And it will be for the better. Keep your head up mama. Hart is lucky to have you.

  438. You are blessed. We have a 25 year old son who contracted Meningitis Group B strep at birth. My husband and I were told our son would be a vegetable and wouldn’t live long. We embraced Ethan and prayed for him without ceasing. He defied the odds and is now a productive young man. He works at a local disability employment service, and enjoys his job. Ethan is nonverbal due to the bifrontal brain damage. He is developmentally delayed, but is high functioning. He has his first girlfriend ever, which we thought would never happen. Ethan uses some ASL, but prefers to use his phone to text simple words. Our lives are so enriched having Ethan as our son. It’s a lifetime of advocacy, and praying. Hart will bring blessings you can’t even imagine. Also you, I too have had a difficult marriage since my husband had a lengthy affair. We were able to work through the difficult situation, and I was able to forgive him. Blessings to you and your family.

  439. I truly believe god would not give you more than you can handle. You acted quickly on instinct and did not give up. Allow yourself to grieve as it is a natural process. From one momma to another -who’s children are now adults – with a child of my own who has an autoimmune disease – Just know that everything will be alright.

  440. As a mother I can’t imagine the strength this takes….your fight for your child, and your positive outlook is inspiring!!

    You’re children are truly lucky to have a woman as strong as you as their mother.

  441. My heart goes out to you and your family…… such a great mom Megan when it comes to your child only a mother knows the struggle you go through my thoughts and prays are with you and Hart…..

  442. I know that this comment is going to get lost in the mix of so many but I am in orange county local and for years have supported through prayer and spirit your journey and my sister manufactures in orange county a special oil that is a one-of-a-kind blend that has helped cure so many kids with brain issues. And no I’m no doctor but this oil is a broad spectrum cannabis and she has administered it with permission from the parents to many children who have had epilepsy, autism, cerebral palsy, And have all had major success. I’m sorry to say it but I’m sure tons of vaccinations have hit his body and even though we don’t want to think about it this could have affected him and the only way to reverse the damage is cannabis oil but not all are created equal. Reach out to me anytime. I’m serious that I really feel your son could benefit from this oil and it’s never affected anyway negatively. It only helps and promotes healing in the Endo cannabinoid system

  443. Dearest Meghan, I have wanted to respond to this sweet and heartbreaking blog for a few days. Trying to find the right words to comfort and empathize with you.
    Approximately 20 years ago my husband and I were told by our pediatrician they suspected our son had a form of cerebral palsy. Like you, at 6 months I felt like there was just something not quite right. Our son, Graysen would rare his head back and was so stiff when you tried to hold him close. We went through batteries of tests, set at neurologist office. Fearing the worst. Thanking God our son didn’t have all the obvious things those other sweet babies did. It’s an experience you can’t ever truly explain. He scared us to death. Doubted our son would ever walk or maybe even talk. After diagnosis we began in home PT and OT 3 times a week in our home. He was such a calm sweet boy. It was hard to watch him go through sometimes painful therapy. But, with this therapy and I believe God’s hand. He began to meet all milestones. The diagnosis became mild CP. we choose through the years to not label him. He didn’t even know he had anything that made him “ different”. You honestly couldn’t tell by just looking. By all appearances he seemed “normal”. Until
    Nighttime came, bless his heart he had such leg pain. We figured out frequent baths would relax his ridged muscles and back to sleep he would go. I didn’t want him to take medications. We always went the natural route. When he got older you could hear the bath water running and he was “taking his batub” he already knew how to fix the pain.
    He played all sports. He wasn’t ever the best. His right leg failed him when he ran fast. But he never wasn’t on a field or court. He’s very musically gifted. That’s has been a great gift! Our son is now 21, 6’5”. In the past few years we have had discussions about why he can’t do everything he wants. Why his body fails him. He had an amazing basketball shot, but didn’t have the speed to keep up. Luckily through the years of my husband coaching or other coaches he hasn’t missed a sport. He’s played varsity basketball (that’s his love) and been to state in his high school band. He’s my hero really. He’s not bitter or ever uses it as an excuse.
    I want you to never be limited by a doctor! Your sweet Hart and God will amaze you and prove there’s no limit!! If I can ever help you or over support, I would be glad to. I know you have had a lot to deal with. But the Prayers of many avail much. Stay strong!!!! Tammy Stephens