An Update On Hart’s Progress

Hart is doing wonderfully.  He is hardly considered “delayed” in any of his milestones and is functioning right alongside other kids his age.  He runs around on the playground, he’s started identifying colors, he speaks in full sentences (sometimes), and finishes the ends of our nightly prayers.  He even started preschool this year!

 

A little background: The moment Hart was born I knew something was atypical.  He cried so much even the nurses didn’t know how to soothe him.  And he suckled on my breast shallow and often.  His limbs were stiff.  He was easily startled.  He learned to focus his eyes later than Hayes.  And although he grew at a typical rate, laughed on time and played with toys, but I just knew something was different.

 

All the doctors and therapists told me I was just being an overly cautious mother.  I thought I was losing my mind, but I insisted upon an MRI.

 

That MRI confirmed a diagnosis of Periventricular Leukomalacia or PVL which is brain death caused by lack of oxygen.  This is often a precursor diagnosis to Cerebral Palsy.

 

Since that diagnosis I threw myself into researching treatments.  I spoke with doctors in Chile, Panama, and Egypt.  I spent 6 weeks in Los Angeles with Hart doing intensive therapy.  I spent 4 weeks in New Orleans going into an oxygen chamber with him every day.  I continued the oxygen therapy in St Louis for an additional 8 weeks for a total of 60 “dives”.  I tried (and failed) to get him into a stem cell study at Duke using his sister’s cord blood.  I got him signed up with the Missouri state program, First Steps, to do every type of therapy available.  I researched and found private therapists when we traveled so we never skipped a beat.  I did all of this between his first and second birthdays.

 

Now he is 2 years and 4 months old.  He has somewhat plateaued in his physical progress which can be very disheartening for a therapy mama like myself.  But he does all the typical things for a kid his age like goes up and down stairs, insistS on buckling his car seat himself, “jumps” from the coffee table to the couch (I quoted “jumps” because he doesn’t actually lift both feet off the ground at the same time), and hits baseballs off a tee.  He struggles with balance – but this is hard to teach – so his therapy goals have shifted from physical therapy to making speech therapy the main focus.  The intention is to help him learn to communicate and annunciate better (despite him speaking in many full sentences).

 

I wanted to tell you all of this before I tell you this: yesterday Hart was diagnosed with Hypotonic Cerebral Palsy.

 

I was expecting this diagnosis.  Even though he’s the same kid I expected it to hit me hard.  But it didn’t. It didn’t hit me hard at all.  In fact I felt relieved.  Think about it this way: it was as mundane as going through life every day without putting the lid on the toothpaste and then finally, I got to put the lid on.  That’s how simple and right it felt.  (I even had a dream the night before about being at the doctor and receiving the diagnosis and being unfazed.)  This is the once dreadful diagnosis I knew was coming since that fateful day I googled the right thing and it hit me like a truck: CP.  I knew it was CP since Hart was a few months old.  I just knew.

 

My older cousin has CP.  I never saw him walk.  He’s also deaf and doesn’t really speak.  This has been my only frame of reference to Cerebral Palsy my entire life until now.

 

I didn’t realize that there’s a very broad spectrum of CP and it’s neither shameful nor sad to land anywhere on that spectrum.

 

But isn’t he doing so well?  Why did he get this diagnosis?  What does that mean for him?  Will his therapy change?

 

Hart is doing great which is why I told you about how far he’s come.  In fact, I was surprised that he got the diagnosis of “hypotonic” (which means he has low muscle tone, or “floppy” limbs) because his limbs have always felt so stiff and hypERtonic to me.  It’s important to understand that people with CP often have mixed muscle tone (hyper AND hypotonic muscles).  His neurologist explained that probably due to all of his therapy his “stiff” muscles have become “less stiff” and now the main focus has shifted to his areas of low tone (like his core).  Hallelujah!  The therapy worked!  Which is proof why early intervention is incredibly necessary for anyone who even suspects something might be atypical.  If I hadn’t advocated for Hart he would’ve lost 16 months of therapy until he got his CP diagnosis. The younger the brain the more malleable it is and able to form new neuropathways that will be there for life.

 

Cerebral Palsy literally means “brain paralysis” which I find to be an exceedingly misleading and ridiculous designation.  Hart’s brain isn’t paralyzed, but there are some areas of damage.  CP quite simply manifests as a motor disorder.  That’s it.  Yep.  It has nothing to do with cognitive function, hearing, etc (although these are deficits often found in people who have CP they are referred to as “comorbidities” and not CP by definition).  You’ve seen Hart walk: he’s a wobbly Humpty Dumpty preschooler.  What you’re seeing is his CP.

 

Hart’s new diagnosis really means nothing different and changes nothing.  It just allows him to continue receiving the therapy he’s already getting.  (And I will continue to adapt to his needs as they evolve and change.  For instance our main concern at the moment is balance and marking areas of danger so he can train his brain to react to hazards in ways that don’t apply to you and me.  Some other time I can go into this and other adaptive techniques I use to help his brain.)

 

Hart will live a full, independent life.  He will face challenges his siblings won’t and alternatively they will face challenges he won’t but we just don’t know what those are yet.

 

A diagnosis isn’t limiting, people are.  We are all born beautiful and perfect and then we learn we are too fat, too short, too ugly, too inept, too… everything.  We place others in boxes dependent on their labels and we unconsciously allow ourselves to live within those boxes: woman, college graduate, high-school dropout, professional athlete, Cerebral Palsy.  I am choosing to celebrate what makes Hart different and raise my children with the encouragement to live their lives out loud and never let their differences limit or define them.

 

My hope is that Hart can inspire others with a “diagnosis” not to hide it for fear of judgement but to wear it as a badge of honor, a source of pride for all the hard work he’s accomplished that most of us will never understand.

 

So today we celebrate World Cerebral Palsy today.  Hart earned this very special 1 out of 500 diagnosis just in the nick of time to celebrate!  And celebrate we will!

 

(Parents: if any of you are concerned your child may be on the CP spectrum please push for early intervention, it could change the entire course of your child’s life.  The brain is a beautiful thing.  For more information on Cerebral Palsy please visit https://www.cerebralpalsyguidance.com/cerebral-palsy/)

189 Comments
  1. Wow, bravo for being such a proactive mom. Your advocacy for Hart will help so many other big and little “hearts”!

  2. Bravo mom for your tenacity and advocacy even when you were “ignored” by medical community. If not for you, Hart would have lost the much needed early interventions that have helped him progress to where he is now.

  3. You are a great mama! My daughter has hypotonia- still looking for the underlying cause. She is about to turn 2 and like you said, therapy has helped tremendously. I put off the MRI until her microarray genetics test comes back (any day now), then will see from there. Facebook has an absolutely amazing group of mamas called hypotonia parent support group where I have learned a ton. Thanks for sharing your story and being an inspiration to so many! 💗

  4. You are an amazing mom to him, and his siblings. I truly believe a moms intuition should always be listened to. Oh the places Hart will go~ what an incredible journey it shall be!

  5. My great friend growing up had CP. We were so use to it, she did everything we did just in a different way, we forgot about it. She’s grown with 2 adult children. She has her doctorate and 2 master’s!!!

  6. What you have done to help Hart progress is wonderful. I am curious if you think being a twin and wanting to be able to keep up with Hayes has made a difference to how Hart handles day to day activities?

  7. Thank you Meghan! My A twin is struggling and the question about cp came up. So I’m heartbroken but we’ll see where therapy takes us then we reevaluate with an MRI

  8. Thank you so much for the update on Hart! I’ve been watching your Instagram for so long and have been watching your kiddos grow and grow! They are all so cute and so sweet! Love that Hart is making such wonderful progress! He looks great and I love to watch him run and play with his siblings! Great things are going to happen to Hart along with Aspen and Hayes! Such a wonderful thing therapy can be! Keep it up Meghan your doing a amazing job with your Hart and all your kids! Keep posting his progress love watching it! Take care and god bless!

  9. Thank you for your honesty.
    You are an incredible mother and a life-changer.
    And Hart is a beautiful, incredible, valuable and oh-so worthy child of God.
    Keep posting please.
    To God Be The Glory!

  10. You’re amazing and so are your children!!! Do not ever let anyone, anyone tell you differently! Keep it up MaMa you have definitely got this beautiful blessed life and it looks as though it will only become more beautiful and blessed! Love seeing and hearing you!

  11. You are the BEST momma alive! You love and take such good care of your children. You should be super proud of yourself. Those children are so blessed to have you as their mother. Great work Meghan. God bless all of you. ❤️

  12. I absolutely love your perspective. My so. Has ADHD, learning disabilities and anxiety. We did not know what it was for so long, and just having a diagnosis was helpful. I wish I would have had your attitude from the beginning. Your are a mature younger woman, Lady!

    Way to go, Hart and Momma for all
    you have accomplished. Can’t wait to see what you do next!

  13. I have always said, “You (parent) are your child’s advocate!” I praise and applaud you for following your “mothers intuition” and continuing the research needed to find answers for your son. Not all doctors are correct and fighting for your child is exhausting, costly but oh so rewarding when you find the answers you seek. ( I did the same for over 15 years for my child. ) Continued prayers for Hart, yourself and his siblings on this journey.🙏🏼🥰💙

  14. Meghan there’s a family who live in Utah who have twin boys one of which has cp they have a you tube channel called our life in Holland which is also their Instagram page too the twin with cp has just started stem cell treatment go check them out and might be worth trying to connect with them too so you can get advice from them too

  15. Thanks for sharing!
    Amazing words of encouragement for all.
    Great job for being the one that kept pushing for what is always best for your kids!❤️

  16. Well done! You Hart and his sibs make a great team. Cheers to the beautiful and joyful…although occasionally challenging…life y’all will share going forward! Brava! 👏👏👏

  17. Meghan you are remarkable, strong, persistent, smart. I could go on. Keep doing what your doing, I was really feeling this “blog” regarding Harts CP diagnosis. Your are a beautiful young woman, those children are so fortunate your their mommy! Muaaaah

  18. You are an amazing mommy to Hart, Hayes & Aspen! Your children will thrive & continue to amaze you! And make you so proud! Much love & prayers!

  19. Hi Meghan, I have been following you for a little while now and I’m so impressed with Harts progress and what an amazing mother you are. It’s day in/day out consistency and love that helps children thrive and grow and you are doing an incredible job! Pushing for therapies and new advances can be a big help. One of my three sons was born with disabilities – not physical but learning disabilities and processing issues. They told me he would never go to high school nonetheless college. He is now a college graduate, a gifted artist and a National Park Ranger. I worked my butt off as people just wanted to write him off.

    I wanted to let you know that I have a friend with Cerebral Palsy. She’s an adult and she works for the CIA. She has physical challenges but she is able to walk and do most physical things. She’s had an amazing career and although cerebral palsy is certainly a challenge, it hasn’t held her back from living a full life, She was recently married. Life is full of possibility and love .
    All the best to you and your beautiful family. 💗

  20. You are such a great mother and advocate for your children. Your children are so lucky to have you. Keep doing you!

  21. “Hart will live a full, independent life. He will face challenges his siblings won’t, but they will face challenges he won’t, we just don’t know what those are yet.”

    Crying reading this beautiful and raw post. Meg, I’ve followed you since RHOC days and especially during this past year of hardship that you and your family have faced. I seriously find you and your commitment to your babies and your own happiness so inspiring. Sending you all nothing but love and solidarity. Hart is so special and I am sure, if his momma’s love is any measure, he will lead a beautiful, meaningful life.

    Warmly from brooklyn nyc,
    Marcela

  22. Thank you for sharing this journey and your strength. You made things happen because of your intuition and passionate need to educate yourself and not accept stock answers. Well done.

  23. My daughter is 6 and a triplet and she was diagnosed at 2 1/2 with CP. my triplets were born at 28 weeks and she was my healthiest and biggest baby at 2 lb 12 oz and so we were surprised at her diagnosis. She has worn AFO’s ever since and been in physical therapy and she has made great strides. We celebrate her CP and tell her God chose her to have CP bc she is so strong when she asks me why she has it. It is hard to be a mama of a kiddo with CP but we are also so lucky she is so mild and able to do so many things other kiddos with CP can’t such as ride a bike, run, skip, jump, etc. I also felt relieved to have a diagnosis and be able to learn more and get her the early intervention she needs to help her be as independent as she can. Hugs to you mama and huge props for being an advocate for your kids and raising them to embrace their differences and love each other as God made them—perfectly imperfect and unique!

  24. Happy Celebration of World Cerebral Palsy day! Hart you are rocking it! You will make a difference in many, many lives!!! I can’t stress the early intervention (great job Mom), parents need to trust your gut, if you feel something is wrong in your child’s development talk to your pediatrician, if you don’t get anywhere get a second opinion! That goes for any physical or emotional issue!!

  25. Megan, In my reading of your statement on Hart’s Progress it is clear that YOU (and Hart of course) are the reason that he is doing so well. You did EVERYTHING right!! Because you went from your gut and you didn’t stop, it is quite possible that you have enabled Hart to do things that otherwise he may not have. You are a strong and positive woman and I absolutely LOVE everything you stand for. Keep pushing forward because you have paved the way for so many others. God bless you and your precious little ones🙏

  26. Thank you so much for sharing this. My son just turned 3 and has Mild CP. I feel like I could have written this blog post! At first his diagnosis or potential diagnosis felt very isolating and scary but now seeing all of his achievements and accomplishments make me prouder than I could’ve ever imagined. I can’t express how you sharing your story really means SO MUCH to me. Thank you!

  27. Megan, you’re one tough Mama!! You got your boy all the resources he needed!! Hart is doing great!! Wouldn’t be without your perseverance, which I’m sure was exhausting! I applaud you!! 👏🏻👏🏻👏🏻💪🏻💪🏻💪🏻❤️

  28. God Bless you 💙 Hart is so lucky to have you as a advocate. His progress is visible. I have a cousin with CP from lack of oxygen. I think your early intervention has made a significant difference.

  29. God knew that Hart needed you. I’m so happy that you went with your instincts and didn’t listen to the naysayers. Hart will live an amazing and blessed life because his mother was always in his corner. You’re a wonderful mother and you should be proud of yourself.

  30. Wow. Thanks for taking the time to write all about this, Megan. Very, very interesting info. You are such a fabulous advocate for Hart. Please don’t ever stop! Keep pushing for what is right and available for him. I am a former public school Sp.Ed teacher with starting my career with Orthopedically Handicapped students. Had several mild and severe C.P. students. Our P.T. was the best thing for these kids, and my aide and I felt it so important to follow the stretches and exercises, even after the therapist moved on to other classes. Do as much as you can for Hart. Again, keep researching, keep pushing, keep asking questions, keep working with him one on one. You’ll be amazed how well he does. Good luck and may God watch over him!
    Nancy Spusak
    Ohio

  31. You are a fantastic family! You, yes you, Megan pulled them all out of what you suffered 2 years ago with difficult disruption on your lives. Adversity does make you stronger! Many of us have followed your journey from Real Housewives and you make us proud!

  32. Hart is very lucky to have you as his mum as you are blessed to have Hart as your son. He has come a long way with such a supportive mummy and he looks a happy and contented little boy playing with his brother and sister, eager to do things and get involved as well as being very independent! Meghan what I’m saying is you should be very proud of yourself and for everything you have done for your beautiful little family! You did it whilst having to go through such an ultimate betrayal and had to go through it very publicly. You have shown you are a strong woman, a fighter, a warrior and a super mum and you have my total respect… keep doing what you do as we love you 💕

  33. You are so brave and the only reason Hart is doing so well. I have followed your journey and you have advocated for him like no one else. Hart is so lucky to have you momma!!! I know his future is so much brighter because of you.

  34. Thank the Crestor for Moms like you! You’re so right, Hart will only be limited by the limitations OTHERS put on him. He’s lucky you were chosen to be his Mom. Take care and Be Safe.

  35. Your words tell an amazing and true story. I’ve followed you on insta and watched you and your determination to do the best and be the best not only for Hart but all your children. You are a blessing to the world and thank you for sharing such a personal story with the world. If only everyone could be so vulnerable and honest with life challenges and have the grace and dignity to share so others that don’t have a voice can realize they are not alone.
    To your entire family…live, love and flourish in this life for you have and will continue to make a difference 💕💕💕

  36. Dear Meghan,
    I am an SLP. Based in NYC. I am deeply moved by your wonderful acceptance and positive outlook for your son. He is your gift and you are gifted with an innate understanding about therapies, challenges, and how the brain works for our good when we apply what we learn. Please use this gift to help parents who are unable to understand the way you do. As a therapist I can tell you, it is this that is the obstacle for optimal healing and potential . Parents need the fixation from other parents. Not from us the professionals. They see us differently. They need you! Please help them so we can help their children more effectively. The children are amazing and open and the brain is amazing and wants to heal. Please please educate the parents. They need you. You are gifted. Help them! We need you in a space where we the professionals are limited!
    Sincerely and gratefully, Carol Delgaudio MS, CCC-SLP
    cdelgaudio12464@gmail.com

  37. Love this! I’m an autistic adult, a self advocate, I’ve done special Olympics. Disability does not mean inability.
    Just from watching your Instagram I get the Hart is someone who is going to be quite the rockstar at life.

  38. You are not only amazing but inspiring. You are an advocate and your children are extremely lucky as are the families you are touching by sharing your story. Thank you.

  39. Wow! I love the blog and up beat way you think. So often as you said, people don’t see through the little things that make people unique.
    I love the John O’Leary story. His Mother told him to take his piano lesson (his fingers were amputated due to being burned). When he played the piano at MICDS I cried. He only had knuckles. Good thing for you and your family.😊👍

  40. Yes, yes, AND fuck YES! Early intervention doesn’t “undo” or take away challenges but rather gives them skills to work through them. I’ve lived this-everyday- since my daughter was born 8 years ago.
    Not one person believed me; Drs, therapists, specialists, family- but in my heart I knew the only way to help her was to keep pushing. Because I keep calling, knocking on doors and politely smiled as they told me I was crazy, her quality of life is off the charts better. You’ve done (and he’s done) so much in these two years-wait to see how he wows you in 6 more. Keep rocking it Hart and mom!

  41. You write so nicely! I love watching all your kids on your stories seeing them grow into adorable sweet little kiddos. Aspen is so lucky to have 2 amazing brothers and they are blessed to have her as well. Hart seems to get around so good. He doesn’t let things stop him and that’s amazing. I was born with Erbs Palsy and when I see him doing everything the other kids do reminds me of myself as a child I did things just in my own way with one arm to use. I always wanted to keep up with my older brother. Your a great mom and my parents always encouraged me as well. Keep up the great support and encouragement!!!

  42. I don’t typically comment on a celebrity’s post but couldn’t help myself. I am so inspired and impressed by your resiliency. Sending you and your family warm thoughts and continued (big f’ing) achievements.

  43. You are an amazing mother! You are an example of a parent who advocates for their child. I enjoy following Harts progress and your ability to learn along with him in this process. 🙂

  44. You are a fantastic momma! I love reading your pieces. You are fierce in your love for your children and your determination and drive is inspiring. Your growth and perseverance throughout your struggles has been so great to see (what we can see online at least😁). High five to you!! Thank you for sharing your life with us! I wish nothing but continued health and happiness for you and your family.

  45. He has done phenomenally, you are a great mommy for the exhaustive research and diligence to get the therapy he needed at such a young age!
    Continued prayers for his advancement in life.

  46. I have a severely autistic child and like you I threw myself into every therapy. I learned so much along the way. And while by traditional standards we are still very much on the spectrum, I gave the most loving, happy and determined child.
    I too am divorced when my 3 children were young… and it’s been a journey. One I never saw myself on, but one I’m really glad I was strong and brave enlightening to face.
    Stay strong and stay true. Hart and the rest of your kids are so blessed to have you as their mom.
    I wish you all the health, love and happiness this works has to offer.
    cox
    Allegra

  47. You are an amazing mom and all three of your children are so lucky to have you. No one is a better advocate for a child than their mother. Hart is a lucky boy but I’m sure you would say you are the lucky one. Your main priority has always been your kids

  48. God Bless Hart and your family. He is a beautiful boy and will thrive with all of the amazing therapy you are able to give him

  49. Thank you, for sharing. I’m a special education teacher and love reading all about your adventures with Hart and all your babies. Thank you for venting open to hopefully help other parents understand. Some just don’t get it. Or don’t want to hear it. The babies I teach are ALL amazing in their own way.

  50. My twin Theo is a CP warrior too! Today we climbed the stairs at the playground, they are his favorite! Not yet walking at almost 3, but climbing like crazy! Keep moving forward and we will too! Stay strong!

  51. I’m so proud of you Megan. I always watch Hart’s progress.
    He’s such a cutie as are your other children. In spite of all your troubles, you made Hart your priority. His progress is amazing.
    My prayers are with your family.

  52. Your a great Mom! He is a beautiful Child and I can see how much he and his brother and sister are loved and taken care of !!
    Keep going Hart You are Wonderful!!!
    🙏

  53. Thank you so much for the update Meghan. I’ve been looking for one. Hart It really goes to show that mommas have a sense and gut feelings and I’m so glad you followed yours and pushed for tests (MRI) You are going to help so many people to follow their ❤️

  54. My father had a career in gifted and special education. So, I’ve been around all kinds of people with different abilities (as I like to say). Momma’s always know, and a truly great doctor, pediatrician etc. will listen to a mom!! Your outlook will give, and has given Hart the best life with more and more abilities.
    Some parents baby their children and protect, rather than teach and treat them like any other kid, helping them to be the best they can be. All parents should do that, but so many don’t.

    You are, truly, an exceptional mom.

  55. Kudos to you Meghan. He is a beautiful little boy who has been blessed with you as his momma, just as you have been blessed to have him as your son. You will both continue to learn from each other and grow together. Thank you for sharing.

  56. Wow! What an incredible post. I’ve watched the journey you’ve shared with Hart and have been moved by your persistence to seek out the therapy he needed early. You are a very strong woman who fought hard for her son while going through emotional times herself. I truly hope you have found happiness and peace in your life. Thank you for sharing pictures/stories of your beautiful children with us.

  57. Meghan – You should reach out to Liza Huber. Go to her IG page as she has a child w CP, and has documented procedures, etc. Liza is the daughter of Susan Lucci. Keep the positive thoughts flowing! You are an amazing mama!!

  58. Hart is so very lucky to have a mom like you! So smart, so determined, such a beautiful advocate for this beautiful little boy. I am proud of you both for staying the course and look forward to following the “adventures” of Hart as he grows. God bless you and your family!!!

  59. Thank you for sharing this Meghan, I love your honesty & you are truly a magnificent mummy !

    You have been through so much & if I hear of any amazing treatments in Australia 🇦🇺 I will let you know! I’m a mother of three boys and I love to hear of new things.

    All my love

    Emma Bell 🔔
    +61405286609

  60. Thank goodness you listened to your mama gut. There are too many people that have said, “I knew something was wrong but no one listened to me”, – so thank you for showing us what tenacity and determination can do.

  61. Meghan, I really admire your advocacy and determination. Hart is lucky to have you and his siblings. I too only had a dramatic vision of what CP was when my son was dx. I too have learned and CP has proven to be a magic ticket in terms of service. Keep up your energy, remember your his mom not his therapist. Take care if you and know you’ve got a huge circle of mamma bears around you

  62. He’s a lucky boy to have a mom like you! Thank you for sharing, and thank you for educating the rest of us! Go, Hart, Go!!

  63. Beautifully written. I’ve shared an office for 9 years with a colleague that has CP who is in a relationship, travels, bush treks and rock climbs (amongst other awesome things), and does all this despite being in a wheelchair. She is super inspiring and has an amazing life. She is one of the happiest people I know x

  64. Meghan,

    Your such a great mom! You remind me of myself when my son had what was finally diagnosed as Kawasaki Disease 16 years ago at the age of 4 yrs. Yes it still effects him in small permanent ways but by fighting back he has more than fulfilled his physical potential all through his youth and now still as a 20 year old college student playing college baseball. Thank you for sharing Hart’s journey. Your writing is heartfelt and eloquent. Happy CP day and best wishes for continued improvements for Hart. Cherish and enjoy all of your beautiful children. It goes by to fast!

    Lisa Ande🙂

  65. Thank you for the update. It’s so amazing and wonderful to see Hart running and laughing with his siblings! Thank you for your inspiration and support to all that are facing the same diagnosis for their children. You are also a beautiful writer. I always learn so much from your blogs. Wishing you and your family continued good health and happiness!

  66. God bless you for following your gut! You and he were chosen for each other. He need you to be his worrier & you needed him to learn, grow & face the challenges that MAKE you, never break you!
    My boss had a baby boy & she was suspicious of something as he was growing, she pushed for therapies around Autism BEFORE the “diagnosing” age of 3. Today her son is 7 and has a much higher functioning brain with autism than he might have had if she didn’t blaze a trail for our county & get her infant some therapies he truly benefited from. Thank you for sharing Hart with us!

  67. Meghan,
    Your children couldn’t be more blessed to have such a kind, loving, and passionate mother. As a mother with a child who also has a rare disease reading your words are encouraging, uplifting, and make me nothing short of proud for each Great and Small milestone my child surpasses. I am honestly so inspired by you and often take some pages from your book! Keep up the incredible work and I wish nothing but success for you, Hart and of your other beautiful children!

  68. Hi. Thank you so much for writing this. I am so impressed with Hart’s progress. We are looking into HBOT and I was wondering what role you feel this treatment played in his progress?

  69. Hart is very lucky to have you be so determined in early intervention. Worked with preschoolers for many years. So many parents do not want the “bad” reports or the stigma of having a child not meeting those milestone stages. You forged through.
    I think Hart will surprise you even more since he seems to have that spirit in him.

  70. You’re a great mother and I always enjoy watching your stories on Instagram. I am so glad you have found happiness. Continue being you and doing a great job as a mother!! 🙂

  71. You have gone above and beyond. Don’t ever let that mean ex husband make you feel less than. You are inspiring and exactly what a mother should be. Keep fighting the good fight!

  72. You are the reason I pushed for my one son who’s also a twin I just knew it! All because of your blog posts and your son I was able to get the ball rolling on my son because everyone told me I was crazy.

  73. Before reading this I had some preconceived (incorrect) notions about CP so I thank you for sharing this. You’re an amazing Mom and your positive attitude makes all the difference in how your children learn to handle life’s challenges. You rock!

  74. Your strength and dedication is so admirable. You are an incredible mother, thank you for sharing Hart’s journey with us!

  75. Meghan, You are an amazing mother…and your kids are absolutely adorable…that Hart is the sweetest child. I feel like he is part of me…I cry when you write about him or show pictures of him always running with his brother or trying something hard to do….but he does it…he is amazing like his mother..and I can’t thank you enough for sharing your kids with us…Aspen and Hayes are precious also….I love them all…you are so lucky to have Mom and Dad close, too…you are surely blessed…

  76. What a strong woman and mother you are. Hart is so lucky to have you in his corner. I admire you so much for this. Keep up the good work!❤️

  77. God knew to give you sweet Hart! ❤️ Meghan you amaze me. I mean every time I read your blog, I’m impressed. You are very Strong ,intelligent,kind & Beautiful! You handle everything with such grace! God bless you & your sweet family. ❤️❤️❤️❤️

  78. Thank you so much for everything you share. Facing it head on is amazing and shows the Love of a mother. I continue to wish him well and look forward to watching a tour kids grow.

    God Bless you all

  79. Hi, I watched you on tv & often update myself on how your doing with your beautiful children. I live in London England.
    I have just read your story about Hart😢through my tears!! You truly are the most amazing mum to your children, Hart is a gift from God given to you so he will have the best life ever🙏I’m sure you will have good days & bad days, but when you look into your children’s little faces it will all be worth it.
    You truly are an inspiration to others, I pray your life will be filled with love & happiness always xx

  80. I’m sure you hear it all of the time but bravo! A major fucking bravo! You are inspiring, full of grace, and a fantastic mother. I just follow you on Instagram and know very little of your life. What you just wrote was nothing less than amazing. From one mama of twins to another, thank you for being on this earth and sharing your journey

  81. Your strength and courage thru Hart’s journey has been simply amazing!!! Your relentless pursuit of therapies has been impressive too! As an Aunt of a nephew on the Autism Spectrum, I applaud your tenacity. It is not an easy road and you have navigated it beautifully! Kudos Mom!

  82. As a pediatric physical therapist and just an overall Dan of yours, I commend you. Hart is so lucky to have you as his mama ❤️ Thank you for sharing

  83. I have twin girls who were born at 28 weeks after a very high risk pregnancy. As a result, one of my girls has what is also considered Hypotonic CP. They are nearing their 11th bday and while she has a different gait and speed when walking, running and going up and down steps – you wouldn’t know otherwise. She’s in consistent PT, but has graduated to observation-only OT. She’s super smart and such a spitfire. We too, knew something was up because she wasn’t developing in a typical way and her twin was hitting milestones on time. her twin walked at 1, but she didn’t walk completely independently until after 2. She was officially diagnosed around 2, but it was not a surprise and, as you said it ensures she will always have quality medical support. It’s a journey, but she’s going to live a completely independent life as well and we are grateful that it was not worse than it is. It is definitely a spectrum – that’s a great way to explain it.

  84. My cousin has CP and his mother fought for him and therapies 44 years ago when he was born. It made all the difference. He is a married, school teacher, who can play the piano by ear and lives a very fulfilling life. Doctors told his parents he would never walk, talk or have “normal function”. Thank the good Lord they didn’t listen and instead did all that you have done for your sweet boy too!! Best of luck as you show your children nothing is impossible!!

  85. Hi, Meghan I’m so Proud of you as mother’s your son hart has cerebral palsy talking about cerebral palsy & it’s will open people’s eyes beware & education about cerebral palsy & people will have more of compassion sensitive about C.P. my mother find out my cerebral palsy it was I was about 1 years old back then we didn’t have the resouces now we have a lots of resouces for cerebral palsy & my father of stomach cancer died in 1989 & my mother died in 1994 of breast cancer, anyway I have a cerebral Palsy & I’m happy with myself in 56 years old with my life!! even thou I struggle with depression issues but take meds for my depression & talking about my feelings it’s help a lot nows I’ve the tools & I feel very good about it.

  86. Some see cp as limiting but im 28 with cp, yes i cant walk like the average person and have found a way thats best for me and sometimes have to use a scooter if going far, my parents where told 27 years ago id never walk or talk etc (we live in the UK), however i did better in school than my ‘able bodied’ sibling and drive and have a full time job and due to get married next year, my partner also has cp again he drives and has a full time job and even plays bass in a few bands. Just because someone says you cant do something doesnt mean its true, we may adapt things in order to be able to do them but we have very fulfilling lives doing what we want and going where we like. Im sure you little boy will do fantastic and take everything in his stride. Personally my childhood was great i wasnt treated any differently to my sister and got to try anything she did, i believe that was the best thing my parents did for me, i know everyone is different and everyone will find their own way.

  87. Congratulations for being an ACE Mom and doing everything for your baby, Hart(and the others). He is so lucky to have a momma who loves him so much and is fighting for him.

    To the ex-husband complaining the media was told first. Boo Hoo. You lost your privileges when you walked out on your wife and children. You’re so self absorbed it’s pathetic.

    Rise up, Hart!!! You were given the perfect name. You have to have heart to stay strong and meet your hurdles which we can see already you are doing!! You’re a fighter!!!

    God Bless all of you 🙏💕💕

  88. I’m glad Hart’s doing so well!!
    He is adorable! As are your other kids! Thank you for being so positive. It is so refreshing!!
    My daughter was eventually diagnosed with autism. I relate to you as I always knew there was something a little different with her since she was an infant.
    She is smart and fun and just great. I would never, ever change her!

  89. As a Speech Language Pathologist in Ohio I have been following your blog and Hart’s progress specifically. What a rockstar mom and advocate you have been!!! I’m so glad you share your story and the benefits of early intervention. Best of luck to your family.

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