Thursday, March 26, 2009

What happened to Max: Finally, we take him home


The day after we found out that Max had a stroke, I was released from the hospital. We decided we'd stay in accommodations there, and drove home to pick up clothes and stuff. When we walked onto the front porch, there were several bouquets of flowers, random packages and a pan of lasagna a neighbor had made. It all looked so sad sitting there.

The house was also sad, too silent and too empty. Dave and I couldn't bear to go into Max's freshly-done room, so we steered clear. I spent a couple of hours on the Web, researching infant stroke and therapies. I discovered an online group, The Pediatric Stroke Network, and joined. That felt good. I had prepared an email with filled-in addresses to send when Max was born. That stumped me: What to say? In the end, I wrote that we'd had a beautiful baby boy who'd experienced some trouble at birth, that the doctors weren't sure what lay ahead for him but we felt blessed to have him.

Friends, family and coworkers sent cards. Some had simple messages such as "Congratulations on your new baby boy!", as if his birth had been like any other. I knew those people were just trying to make me feel better, and I appreciated that. Some people wrote long cards rich with sympathy and encouraging words, and I appreciated those, too:

"I know that everything is really insane right now, but I just want you to know that I'm thinking about you every day and praying for you."

"We are all sending our good thoughts, prayers and fervent wishes for Max's quick recovery. You are very loved at this office, Ellen, and everyone here is beaming hugs and kisses at you, David, and your tiny wonder boy."

"You are incredibly strong, and you will find the extra strength to deal with whatever comes. If you want me to hop on a plane and come be there with you, just tell me."

Over the next week, Dave and I were in and out of the NICU, but mostly there. I passed the time by reading to Max. My favorite book was a Dr. Seuss one my good friend Wendy had brought me, Oh The Places You'll Go. Dave and I talked with a few of the parents there. The baby next to Max, a preemie, was just a little larger than Dave's hand. His skin was so transparent you could literally see his heart beating. His parents had been taught how to tap on his heart to make it restart when it stopped. They told us that he, too, was at risk for all sorts of delays and problems. Over the years, I've wondered what happened to him.

I don't remember on what day or when Max was finally conscious, but suddenly he was, his eyes foggy. No newborn can see that clearly, let alone one who'd been through brain trauma. In order for me to hold him, the nurse had to gingerly lift him out of the incubator so as not to get the wires tangled up, and rest him in my arms. Holding him gave me relief that nothing else had.

I watched Max constantly to make sure nothing seemed off. Occasionally, he'd thrust out his tongue. "Is that normal?" I asked an NICU nurse I'd come to know. "No," she said. "He's also been arching his back. Is that normal?" I continued. But I already knew the answer: No. By then, I'd read up on cerebral palsy; those were signs of it. Then came the day when the sweet young pediatric neurologist showed us the MRI scans of Max's brain, and where the stroke had struck. There it was, in black and white: our baby's brain damage.

Slowly but surely, we found out Max was at risk for more problems. A seizure disorder, for one, although within several days of his birth they'd been contained by the medication. Some babies who have strokes at birth are unable to swallow. Max wasn't one of them, and he was able to down all the bottled breast milk I'd stored. The nurses kept a close eye on his body temperature—damaged brains can have trouble monitoring body temperature. Again, Max held his own. When the nurses came to test for hearing and Dave and I learned Max was fine, we were euphoric.

I asked the social worker who'd been helping us to have the occupational and pediatric therapists visit Max, and they did. I bitched to her that the big-deal founding father of pediatric neurology never had one optimistic thing to say; the next time he saw us, he talked about brain plasticity. Meanwhile, I'd put in a call to Early Intervention (a state program for children under three with developmental disabilities) and told them about Max's situation. Within a month, Max was getting weekly occupational and physical therapy.

Finally, finally, finally, Max was released from the hospital. He'd been there for almost two weeks, but it had felt like two years. My entire life had changed. As I stood in a waiting room, a woman came over to me. "You look so much better now," she said, kindly. Her own baby had some lung troubles, and she'd noticed me on the NICU floor. I can't even imagine how awful I looked. It had barely registered that I'd had a C-section.

We bundled Max into his car seat, and I waited with him in the cavernous lobby of the hospital as Dave got the car. I'm sure many first-time parents can't quite believe it when they leave the hospital with their baby—you're letting me? Take this tiny little creature? Without any experience? For me, that feeling was magnified a million times. I was bringing home a baby who'd been very sick, who was at risk for seizures, and who had unknown delays and challenges lying ahead of him.

But that day when I walked out of the hospital with Max into the sunlight, I had hope. I had a beautiful boy, and I was his mom. And I was going to do everything within my powers to make the world right for him.



69 comments:

  1. No one can write quite like you can, Ellen. I feel like I'm walking in your shoes as I read your family history. Max is a lucky kid to have a mom like you. What a beautiful little bundle he was, too.

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  2. Wow.
    What a story...
    Max has been defying the odds from day ONE! Incredible. I can relate to many moments in your story, but I am still very much in awe of your strength and Max's determination. Two weeks in the NICU after a stroke? Wow. This little boy was determined to go home and show you who he was. Thank you for sharing your story with us.
    Thank you for sharing Max with us.
    xo

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  3. I am very proud of you that you finally have gotten that out. I found it quite healing to tell Jonathans story. I guess it makes me process it better.

    I remember the early days and our many many emails. As Max has healed, so have you. I have to say, I am just beaming for you!

    Oh, and I absolutely LOVE the picture at the end of Dave and Max. I hope that is in a frame somewhere. It is absolutely beautiful, and brought tears to my eyes.

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  4. I've been holding my breath with the rest of the readers. You have a gift to write, that's certain. This is probably not the right moment nor place, but I thought you might be interested in this piece of research I came across in the news recently: Swedish researchers have found more proof of fish (omega 3, 6) boosting cognitive brain activity, this time in teenage boys. http://www.thelocal.se/18088/20090309/

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  5. Ellen, thank you so much for sharing your story. What a little fighter you have in Max. You and Dave are indeed making life shine for him and your beautiful writings are helping other families that follow in your steps.

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  6. Once again Ellen, thank you so much for sharing. It's so incredible to hear Max's story and how much he has overcome in his short life.

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  7. I knew bits and pieces of max's birth story, but never realized all that you both went thru. Writing and reliving this must be so difficult. I hold you in even higher regard. Thank you for your honesty.

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  8. Oh. . . and that is a face worth fighting for!

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  9. Amazing story Ellen. The tears welling up in my eyes today are tears of joy. Coming home is the best part! And only the beginning, really...

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  10. So sweet. Sad, but sweet. I wrote Jude's out too, but it can never read as eloquent as yours. Max is truly blessed to have you as his mom. I know in the years ahead he will express to you even more how grateful his is you are there.

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  11. Ellen,
    Thanks for sharing the story of Max's first two weeks. I know it's not an easy thing to do. I start to bawl just looking at photos of BC in the NICU.

    Although Max and BC had very different births, there are so many similarities about their time in the NICU. I too remember the peace (of sorts) and feeling of 'usefulness' in the expressing room; the negative, somber doctors; the teeny tiny preemies on either side of my 4kg boy; reading to him by his bedside, the late night googling that brought both dread and hope and worst of all the emptiness of having to go home from the hospital without him....

    Max was such a gorgeous baby. And so determined and strong even then, against the odds. And so lucky to have such great parents. xo

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  12. Ellen I've been fallowing your story and everytime I end up bawling my eyes out and can't muster up anything to say. Your story is all too familiar with our beginning and all I can say is thank you for sharing your story with us.
    Thank you
    Christine, Gabi and Mike

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  13. Thank you for sharing all of that, Ellen. I know exactly what you mean about how holding him gave you relief. It was like I could finally exhale each time I held Addison.
    You're amazing!

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  14. Thank you, thank you, thank you, all, for the encouraging, kind words this week. They've meant a lot to me. I was surprised by how vivid some of the details were in my mind, six years later, but I suspect they will always be embedded there.

    May, thanks for pointing out that study—yet more proof!

    Sarah H, you are probably the first person I connected with through The Pediatric Stroke Network, and you have always been an amazing cheerleader for me and Max. And for Jonathan, of course, who is doing amazingly. I will never forget your encouragement during the first year of Max's life, the hardest year of them all.

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  15. Thanks for sharing your story. When Evan had his stroke we went through a lot of the same tings that you did but instead of a discouraging doctor we had an overly encouraging doctor which was just as bad in the long run. Evan's neuro told me that after a year post stroke with therapy we would never even know that he had had a stroke. I was so stressed when he hit that year mark and it was obvious that he was no where near the "normal" boy that was predicted. Now five years post stroke we are still waiting and wondering to see all of the possible effects of his stroke and I know that he will never be like he had not ever had a stroke. I still feel a little anger towards that doctor for saying that to me.

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  16. Such a beautiful and brave story Ellen. Thank you so much for sharing it with us. We all went thru our own private hells in the NICU's across the world. Max is a miracle and his parents, sister, family and friends are so lucky to have him. Good work Momma -- you are incredible!!!!

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  17. Hi! Sorry I fell off the face of the earth for a while. I have a lot of catching up to do.

    Max's story is an incredibly moving one, and I teared up as I read it. Thank you for sharing something so intimate about your family. I know how hard it can be to talk about these things. I'm so glad to have connected with you and had a chance to learn more about Max's progress-- reading about his journey gives us hope for Connor's future.

    ~Jess

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  18. What an incredible story. Thank you so much for sharing. I hope that it helped you even though I'm sure it hurt to "go through" it all again. Max is an amazing little boy!

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  19. I finally had a chance to catch up and read your story. Thank you so much for sharing; even if it was hard to do. I had no idea babies could have strokes either - and look how far he's come!

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  20. I stumbled onto your site by accident. I was looking for information on whether I should get the swine flu vaccine b/c I have a seizure disorder. I read your story and your journey is incredible. As a mother as well, I can't imagine going through the rollercoaster of emotions that you must have went through. Max sounds like a little fighter:)

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  21. A friend we have in common sent me your link. I am in tears after just reading your blog. It is amazing how becoming a new Mom gives you such courage. I praise your courage and pray for you, your husband and Max!

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  22. Wow! That brought back memories for me. Our journey isn't quite the same but so many of the feelings re.

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  23. It's a privilege to know Max in this small way from afar. I spent lots of time in NICU when my Granddaughter was born,in similar,yet different circumstances as your Son.I understand.Thank you-Mary

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  24. That was a truly amazing re-telling of your little boys birth. I'm so glad that he is alive and doing well and that you and your husband made it through that very difficult time. I'm sitting in my office practically in tears thinking about what you've gone through. You are incredibly strong! Again, thanks for sharing.

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  25. Thank you so much for sharing.

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  26. Thank you so much for sharing what is obviously still very painful. It certainly seems as though Max is defying the odds and striving in hiw own way to carve a path for himself in this world.
    Again, thank you for sharing.

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  27. You're a beautiful mother. Max is very lucky to have you to help and guide him through his life. Your story brought me to tears. That never happens. I wish the very best for Max and his family.

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  28. Max's birth story hits so close to home. I feel your pain. Truly, it is a hard but good life to have a son with special needs. Our 3 year old son is non-verbal and in a wheelchair. His neurological condition does not have a diagnosis. He is such a joy!

    Love, Bree

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  29. Ah..lump in my throat & crying. My daughter was born the same year as Max. She has Down Syndrome. I'm so happy to come across your blog... I'm going to look around it some more. Have you ever read the poem "Welcome to Holland?"

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  30. What a truly incredible and inspiring story. Thank you so much for sharing. My daughter was born prematurely by 7 weeks and was in the NICU for some time. God bless you and your family.

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  31. Ellen, I stumbled on your blog last week from... somewhere, I can't even remember. I just wanted to thank you for sharing Max's story. My son Ryan was born six years ago next month and the story is almost identical (failed induction followed by c-section, seizures, MRI, left parietal neonatal stroke diagnosis, "newborn brain = plastic", week stay in NICU, went home without our baby. Years of all kinds of therapies.) There was a lot of uncertainty, but he just finished kindergarten and is mostly mainstreamed now. Looking forward to reading more! Also must join Pediatric Stroke Network.

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  32. Ah, what a blessing and a treasure he is. I agree that Max is a strong, manly name ...and how well you chose, little knowing what the future was going to hand you.

    I found your blog because you followed me on Twitter. And I started here, with Max's story, because I needed to know who the Max is that you love. And now I know and your blog title is so elegant and fitting for Mr Max!

    He's a stunning looking boy, I'm looking forward to getting to know him a little better through your lovely blog.

    Spud (UK)

    xx

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  33. Your story is so touching. Thank you for sharing. My youngest son is about to turn 1 this month,but is developmentally about a 5 or 6 month old baby due to brain damage from a stroke he had in utero.

    I found your blog via google when I was searching for any kind of answer. I didn't find any answers, but I am very thankful for finding your blog and can't wait to read more.

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  34. I came across your blog when searching for updates about the Duke University Hospital CP Clinical trials with banked cord blood cells. Our daughter is 2 years old and our story is similar but her CP was caused by lack of oxygen a birth. It was heart wrenching how familiar your story felt, the NICU, the meeting with Neurology, the bleak outlooks. I guess I'm still bouncing back and forth from that dark unknown area to the light and then back again. :)

    I wanted to say that, although I've just found and read a few of your posts today, I really appreciate your blog and hope that someday we'll see our daughter progress, hear her laugh, maybe even sit up, hold her head up - all of those things that other parents take for granted.

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  35. Just wanted to let you know that I sought out your blog from the article in Parent's magazine, "My Son Had a Stroke." My son too had a stroke a couple of days following his birth (2004) -- a surreal and harrowing experience to be sure. I have longed to hear stories similar and find a "community" that has gone through the same thing... Each subsequent pregnancy I've had, I FEAR a similar experience. Thank you for sharing your story -- I am excited about the potential "community" that PSN could provide. THANK YOU.

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  36. Wow, I almost felt like I was reading my own story of the birth of my son Ryan. He actually had his stroke in utero. Thank you so much for sharing.

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  37. You're writing is magnificent. Once again, thanks for sharing your experiences.

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  38. Thanks so much for sharing your story, Ellen. Our son Max wasn't in your NICU, but he was one of those babies the size of someone's hand that you wondered about. He's doing well and I know your Max will continue to do well -- he's a cutie.

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  39. Stephanie PinksterJanuary 9, 2011 at 8:39 PM

    Oh Ellen!! This is a beautiful blog!! I have thought about you and Max so much. Khrissy from PSN posted one of your posts on Facebook, and I checked it out, not knowing it was "you". As I read your story about Max's birth, and the mention of PSN, I realized who I was reading about. I don't know if you remember us at all, but when I first joined PSN, my Collin was a year or two younger than Max, and I learned so much from you. Collins strike too, was bilateral and MTHFR may have been a contributing factor. We had much in common, which was rare for me at PSN.

    I'm so happy to find your blog and look forward to reading more about Max and his successes!! Maybe we will have the opportunity, amongst the craziness of life to reconnect as well. I am happy to see that you are all well and love is thriving you and your family!

    God Bless ~ Stephanie Pinkster

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  40. What a powerful story! Your courage in sharing your son's story has touched many lives. Thanks for finding the strength to share your family's story.

    Wishing you and your family all the best.

    You have an amazing family.

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  41. sobbing here
    Better collect myself - I have to interview someone in 30 minutes

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  42. Your story is amazing, and I'm glad you are sharing it.

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  43. It took me 9 years and many tears to write about our daughter Mary who was anencephalic. I still miss our almost daughter. Good luck with your journey.

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    1. We too lost an anencephalic child, a son. It's a very long story as you can imagine, but I still think of him every day, all these decades later. Our babies will always live in our hearts.

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  44. You had followed me on twitter and I just popped over to read your story. My son Carsyn has Lobar HPE, at risk for seizures and high muscle tone. No one has said CP, but pretty sure they will when we go to the rehab clinic. We just found out at 11 months old. He is in physical & occupational therapy each once a week. Thanks for sharing your story. Going to read more of how Max is doing now. I write at http://naptimemomtog.com

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  45. Thank you for writing down Max' story and sharing it. Reading about Max brings back so many memories of my son's birth. He was 6 weeks preemie, an emergency C and my first child. We spent 1 1/2 weeks with him in the hospital, and were thrown between every emotion a person can have. I can identify with so much of your story. My son was tested after birth and has a chromosomal deletion that no one knows anything about, but it has meant some developmental delays, learning difficulties and speech issues. He is a tough, charismatic, happy kid at 8 years old now and I love him to bits.

    Special needs is such a negatively loaded label (it was for me too), but these days I realize it really just means that a child has special needs, nothing else. And it really helps to read experiences from other families.

    So glad I found your blog! I found you through Twitter. My own blog is http://traveling-kids.blogspot.com/

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  46. I just found your blog through another blog, and your story is so touching. You write very well... thanks for sharing your story.

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  47. wow wonderful writing of maxs story it must have taken so much to write it I have cerebral palsy as well i just found your blog and I am looking forward to reading every post

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  48. Hi, I just arrived here to these three posts from your recent "not normal" post. This is a beautiful story because it shares so much, and it is so real. I met you briefly at BlogHer 10 on the Kodak tour, and have been following you on Twitter ever since. You're a fantastic writer and a fantastic mom. An inspiration to me.

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  49. Wow. Amazing story. Yes, love that Max! He is beautiful :) Found you on twitter; so glad I made it over here to your blog.

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  50. Hi Ellen,
    I live in South Orange and have read some different things you've written over the years but have never seen your blog until today. I read a piece of yours in Real Simple Family this afternoon and it hit very close to home. Our 6-year old had seizures after birth and we learned she had 2 strokes. My husband and I were living in a nightmare that lasted for years, not knowing what the future held for her. Reading about Max brought me back to that awful time.
    Our daughter somehow recovered. She hasn't had seizures since and her neurologist said future visits were optional. We feel incredibly fortunate.
    She starts first grade at Marshall School on Tuesday.
    I'm not a religious person but I think you are doing God's work by writing a blog which gives hope, comfort, and solace to so many people.
    Best of luck to you and your beautiful family.

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  51. Wow. I was just googling for IPad and Proloquo2 for my daughter Molly. While the stories are different, the questions are the same. We did not have any known issues in the hospital, and things seemed to progress fine until 9 months or so when she could not transition to solid foods. A diagnosis of PVL followed, and we are still asking the "What will she be able to accomplish?" questions. She is in the third grade, and is becoming fluent in sign language, as well as learning the Proloquo app.But I will say this: She has been a blessing to everyone she comes to know, as I see Max is also.

    Thanks for sharing Max's story.

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  52. Thank you for sharing this story. I truly have tears in my eyes. You are an incredible writer and I can only imagine what that was like for you. You and your husband are inspirational and your son is so beautiful and so stong. Thank you for sharing this.

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  53. You are brave to share this painful, intimate story. As I read it, I connected on so many levels. My son Jack was born in 2007 with multiple medical conditions and we too were in the hospital for 2 weeks. Those 2 weeks contain some of the darkest, haunting moments of my 38 years and have changed me forever. My Jack is now almost 5 years old walks, talks a little, eats by mouth, and is happy as a clam. He is beautiful and has taught me more about life than I could have ever learned anywhere else. The challenges that come with raising a child with special needs pushes me to meet them and I will never let down my boy. Your blog is great and I plan to check back. Thanks for writing so honestly about things like the neighborhood kids and your plane ride and such. I CAN RELATE!!!!
    Sincerely,
    Holly W.

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  54. I cried... i felt the love that only a mom could give... God is good and merciful...what science can not do...the Lord definitely CAN! i pray for you and Max...and for all the mothers and babies with special needs...

    Thanks for sharing your story... It is so inspiring... :)

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  55. "But that day when I walked out of the hospital with Max into the sunlight, I had hope."

    This. Yes. Though my child does not yet have a definitive diagnosis, but everytime we've walked out of that revolving door...fresh hope.

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  56. I just found your blog today. I read Max's birth story and sobbed. I have a son who was born with a cleft lip and palate in 2002. We went to the hospital to be induced on my due date, I ended up with a c-section, and it was in the OR we found out. I remember so little of those NICU moments or those meetings with "specialists" that you recall. I do remember that feeling of "I don't want to raise a kid with special needs". Of course, I was not brave enough to tell anyone. As hard as it was for you (I'm sure), thank you for sharing your story.

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  57. I am blown away by your story and your ability to share it so beautifully. My best thoughts go to you and Max. I will be following your words...

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  58. Hi Ellen
    A dear friend recommended your blog to me - her son has been battling for survival since their 20 week scan (he is now 2 years 7 months). I have been following you for a few weeks now, but have only just gotten around to reading about what happened to Max.
    I found it strange being in NICU with a baby who was not a premmie - Isaac weighed in at 9lb2oz. Due to him being an undiagnosed footling breech, we are now on the journey of Cerebral Palsy too.
    Our neo-natal consultant was very pesimistic about his prognosis, but kept telling us that she was normally very positive.
    I hope that you will join us on our journey, just as we are joining you on yours.

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  59. I just recently found your blog and read the story of Max's first days in the world. I won't lie - I was sobbing and feeling so much of your fear and uncertainty. My son's birth was different, but after dealing with jaundice at birth, my son was diagnosed with Austim at the age of 2. He's progressed so well, and although I still have days when I am weary of what his future will hold, I know we will be ok. I love my son more than anything and I am blessed to have him, austism and all. Good luck to you!

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  60. I'm just found your blog on my lunch break and I came across your posts regarding your son's birth story. I have been crying at my desk because so many of the things you described, I have experienced as well. Unlike your son, my son was born at 33 weeks, 3 1/2 pounds. He was taken immediately to the NICU. Sometime during the next 12 days, he suffered an intraventricular hemorrhage in his brain. His head started growing at a significant pace and it was discovered that he acquired hydrocephalus. The feeling that you have when you are told something like that about your child that you have pictured to be "perfect" is nothing that I can explain nor think about, a year later, without crying. He has had multiple brain surgeries to treat this medical condition that he will have the rest of his life. After 6 1/2 weeks of being immersed in the NICU, we (including my son), came home. Like you, we met doctors who were extremely negative. We had more of those than positive doctors, in fact. We learned to just ignore them and just listened to the ones who gave us hope.

    Thank you very much posting this story and letting us into a very personal part of your life. Our little ones are still perfect in every way and such a blessing to us :)

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  61. wow. I know I'm reading this years later but wow.

    our stories are identical. absolutely identical.
    I couldn't stop crying reading through it.
    you've really inspired me to write out my daughter, Isla's, birth story. I have been putting it off for a while.
    gosh. thank you so much. Your Max is a beautiful boy.

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  62. Oh my thank
    You sooo much for writing this!! My son had a stroke and i felt exactly like you every step of the way. My son also had serizures and was in the nicu for two weeks. Thanks so much this made me cry

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  63. My 2 month old daughter had a stroke at birth. Abby also had seizures in the 1st week of her life. My story is the same as yours save a few details.

    Dee- there is NO such thing as *the perfect* child. In other words, the idea of *the perfect* child is a myth. If children were perfect, then targets, EI etc wouldnt exist as there would be no need to.

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  64. I love! Your son is amazing.

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  65. Wow! thank you for sharing and being so honest.
    I'm sure Max is a big boy now and doing fine.
    I pray God bless you , keep you and continually make His face shine upon you and that you'll be greatly strengthened and encouraged.
    Max will continue to be a source of joy to you and your family.

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  66. I can very much relate. My son spent 6 weeks in NICU after birth. Also like you, I had a good pregnancy, stayed active, ate my veggies and drank plenty of water. The truth is, oftentimes you won't know. I love my son to pieces, and my husband and I pull thru every day together like two horses pulling a heavy but precious load (well, add a typically developing younger sib to it :). How old is Max now, Ellen? Seems like he overcame a lot of things as he got older... Love your blog, hugs

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    1. Tatiana, he is 11 now. And yes, he's made wonderful progress. I hope your son is, too.

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Thanks for sharing!