Thursday, July 15, 2010

Preemies, cerebral palsy, autism, Down syndrome, ADD, PDD: We can all relate

Tonight NICU, a 10-episode docu-drama, will debut on Discovery Health at 10 p.m. (ET and PT time). The program takes you behind the scenes of the top neonatal intensive care units in Baltimore, San Diego and Cleveland. I'm going on a quick trip with Sabrina to Kentucky (more on that next week), but I'll be DVR-ing the two episodes airing. And you can pretty much bet I will cry my way through them.

I've always been a person who sobs at sad movies and TV shows. After I had Max, though, I had deep and extreme empathy for preemies and their parents. Max wasn't one—his cerebral palsy stems from a stroke at birth—but I know what it is like to go through extreme trauma with a newborn.

I feel a similar connection with all parents of kids with special needs, any kind of special needs whatsoever. Because even if the symptoms we are dealing with are different, there are some very common things we face as parents of kids with special needs.

* We know what it's like to have that throbbing worry in our heads and dull aches in our hearts about our children.

* We know what it's like to have to get past the grief—and, yes, the disappointment—that our kids aren't quite the kids we imagined, and learn that our kids are awesome in their own right.

* We know what it's like to have to juggle the doctors, specialists, therapists and medications on top of all the other stuff we do—and become medical experts ourselves. (And insurance-company warriors.)

* We know how awful some doctors can make us feel.

* We know how suck-y school progress reports can make us feel, too.

* We know how much it can hurt to see considerably younger children doing things our kids can't do...yet.

* We know what it's like to experience pity, pity we don't want.

* We know what it's like to run low on patience, and then feel guilty about that.

* We know what it's like to feel very alone, despite our family and friends.

* We know what it's like to still wonder why this happened.

And yet...

* We know what it's like to experience the super-thrill of a child doing something for the first time.

* We know how satisfying it is see a child exceed a doctor's expectations.

* We know what it's like to feel deliriously happy when our kids are happy.

* We know that their smiles can heal.

* We know what it's like to no longer think of a child as having special needs but to just think of him as a child, even if others think we are in denial.

* We know what it's like to be willing to do whatever it takes to get a child the treatment, services and care he needs.

* We know what it's like to love a child with special needs with a special kind of love, one that's both tender yet fiercely protective.

What other connections do you feel you have with parents of kids who have special needs?



  1. Wow! You said it all perfectly. I was seriously nodding and saying "Yes" the whole time. I just wish I got that channel!!

  2. Ok, now tears are totally streaming down my face. This has been an amazing night of emotional connections with other special needs moms. Who ever thought you could feel so close to and such solidarity with people you have never met?

    I can honestly say that this is one of the best blog posts I have ever read. It feels so, SO good to know that we are all in this together.

  3. thanks for the heads up will tivo it tomarrow thanks

  4. Great post. It does feel wonderful to have all of you.

    I don't know that I can watch that show, though. I think I have PTSD from my birth experiences / hospital days. My preemie is actually fine, dainty and small, but fine, and my full term child with two major issues is making huge progress but I don't think I can watch this program.

    I remember I had just come across the blog "The Spohrs are Multiplying" and read about whether a mom should try to have a victory baby after having the hard stuff, the premature birth, the health issues etc. All of us who commented discussed our PTSD feelings about what we had gone through. Only a few months later that mom lost her dear daughter to complications of prematurity. That experience is still too hurtful to keep reliving.

    You guys watch and I'll live vicariously through you.

  5. You've summed up all of those emotions/experiences of us parents beautifully. Enjoy your holiday!

  6. xcellent post! I love how you always balance the downside with the upside. You are amazing at providing very needed perspective.

    I must admit that I am very conflicted about watching this show. My twins were born at 29 weeks almost six years ago, resulting in a diagnosis of CP for my son. My daughter appears unscathed so far. Sometimes, though, I still get very angry watching how the preemie experience is depicted in the news and on TV. I know I will cry through the show, and I honestly don't mind that. I think it is good and cathartic for me to sometimes relive those emotions. I just would like a guarantee that this will be a realistic look and not one that perpetuates the stereotypes that are often promoted in the media.

    Okay, off my soapbox. I think I'll give the show a chance, at least ...

    Thanks again for summing up the frustrations and beauty of raising "special needs" children so beautifully.


  7. I liked to think that I made it through our ICU (he was a newborn, but TOO SICK for the NICU) experience unscathed, I can go and revisit the ICU my son spent 8 weeks in and be ok, but I really don't know if I can watch this show... I'll give it a shot (I may need to down a few shots beforehand).

  8. Great post!

    The NICU experience was so. hard. But the NICU we were in was AMAZING and I feel so blessed to have been treated so well. My son has Spina Bifida, so we only spent 8 days in there (and later, 10 days in the PICU), but I am very excited for this show.

    It's such a hard experience that I am actually trying to form a resource/support group in my area for parents going through it. Things as simple as gift cards to get some meals would be so helpful. It's the small things that no one really thinks about.

  9. I second that WOW! I really needed to read this today - thank you! Gave me a little shot of what I needed to move on with my day.
    Thank you.

  10. Thank you so much for this, Ellen. I'm reading this from the Family Waiting Room at Children's Hospital St. Louis; Monkey was just taken in about 15 minutes ago for his selective dorsal rhizotomy (spinal cord surgery). This is beautiful and I couldn't agree more. In an odd way, I've always felt a sense of peace when we're in hospitals, rehab centers, etc. because everyone there "gets it." There are no pity parties, just mutual understanding of each other.

  11. Love this post! Looking for NICU right now...
    I do have PTSD surrounding our 5 month stay, but the worst was in PICU. NICU was mostly good memories. Well, except for those first days when we knew nothing. I'm sure I'll cry, but I think it'll be a healthy cry. Glad it's on at 10 PM so I can watch it alone!
    Kentucky, you say? I'm an hour from Kentucky. You need to tell me your plans in advance so I can more effectively stalk you! ;)

  12. Importantly you bring out the positives, too, Ellen.

    We don't have cable, so I won't see the series. :( But I will read your reviews if you write them.

    I wrote a guest post on my early experience in a NICU. It is linked in my middle column under Brain Food.


  13. Well said, as always!
    I tend to gravitate toward parents with kids wearing AFO's... its like a secret club or something.

  14. I totally agree and will DVR it also thanks for the heads up. I live in Kentucky and hope you and Sabrina have a blast...been here all my life and love it:)

  15. wonderful post! Button was a preemie, but because we adopted him we have never had that NICU experience. I can only begin to imagine how scary it is. All parents of children with special needs share a connection, for exactly the reasons you point out - basically because we "get it" xx

  16. I am crying! Love this post you said it all so well! We don't really have anyone who understands what are day 2 day is. Living with a Child who has special needs takes a special family too! I don't feel so alone right at this moment. Thank you, Deeply.

  17. Exactly! So going to post those points on Facebook and link back here! Thanks for saying what I am not able to write myself!

  18. Wow. Ellen, you told me to feel free to comment on posts that speak to me, so here goes my first one...

    I know that a lot of parents read this blog, so on a post that touches so many of you, I thought maybe I'd share a "child's" perspective...

    I'm not a parent of a child with special needs. I am a child with special needs. Well, more an adult now, but every one of those things you mentioned that you know as a parent of a child with CP, I can honestly say I know each of those too, having CP. It's obviously very different for a parent than it is for a child. I don't remember a lot of what would have probably been the "tougher" times for my parents, but I do remember my own thoughts of doctors visits, surgeries, etc. They are tough, the effect a child's life, but I'm here to assure you...your child is strong and will make it through each of them as they are meant to.

    I know what you mean about always feeling that empathy for preemies even though Max was not a preemie. I was a preemie (born at 24 weeks), so I too have that connection. For me, that empathy comes more from seeing my own experiences possibly play out in the life of another child, experiences that I have no recollection of and that I will probably never have the courage to ask my parents honest questions about. Now that I am an adult, that empathetic connection comes in the form of thinking about preemies now, the technology that medicine has to give them such a great shot at high quality of life. And it also comes in the form of thinking about my own children I someday hope to have. Will I have a preemie child myself, will I watch them struggle in some of the same ways I have, or--perhaps even more strongly weighing on my heart--will I be upset and even slightly jealous if my child learns to walk within their first year of life, while I am still trying at age 22, will they surpass thier own mom in milestones?

    I don't know what so many of you face daily as parents of children with special needs, but I do know we are all connected--parent and child alike, and you can bet I'll be DVRing and watching along with all of you in my community tonight!

    Thank you for this amazing post Ellen! I hope I didn't ramble too much in this comment! :)


  19. Hugs and cheers to everyone here, because we are all amazing moms (and daughters)!

    Debbie, Kentucky was an unexpected trip, a cool blog opportunity I got--will tell all next week. I would SO love to meet you someday!

    Molly, wow. That was an amazing comment--such great insight. You should guest post here.

  20. Ellen, you always have the best tips! I don't have cable TV, but the folks do--maybe they'll record that for me!

  21. Tears! :) It is so moving to read this post! To be able to know there are other people/parents out there that can relate to many of the same emotions/feels I have felt! Thank you!

  22. I have a few thoughts...E (33 weeker, mild spastic diplegic) was our first child. We didn't know what parenting would be like--but we learned quickly that it wasn't like our experience. It gets to me from time to time. I guess it always will.
    What I have learned from being a special needs mom is that we are a damn resilient subspecies of mom. Seriously!! And empathetic without pitying each other--there is a big difference. I've learned that seeking help makes you, and your family, and your children, stronger than ever.
    Vivian is my secondborn--we wanted another child. And yes, I figured the odds were in my favor for her to be a typically developing child. WRONG--she was almost born at 28 weeks. Due to medical intervention, circumstance, or miracle, she made it. And DO I EVER celebrate every single milestone she has--I'd never have noticed if it wasn't for E. It's an amazing appreciation for life, movement, speech, vision, (you name it), and sisterly bonding that I would never have if it weren't for my (albeit reluctant) membership in this mom's club.

    And can I get an AMEN for the Internet? What would I do without you guys?!

  23. Amen sister! I always feel a connection with other moms of kids who have any sort of special need. My son has never been given a diagnosis other than mildly apraxic so we have said that he has swiss cheese syndrome. He is mostly solid, just has a few holes we are filling in with Speech Therapy and OT and Music Therapy, etc. He is so unique and special in his needs. He has never fit into a category. And so it has been really hard to find a mom of another kid just like him. But I have found so much great support from other moms who have kids with all sorts of special needs.

    I always enjoy your posts! Thanks!

  24. Just found you through Lenore (yay for Free Range!). My Avery (at nineteen months) had a congenital heart defect at birth that was repaired but she has been since diagnosed with CP (they don't know when it happened...could have been at birth, when she got septic or when she was on bypass). I am going to keep up with you so I can feed off your good energy and tips. (Not that I need too much good Avery throbs with it!)

  25. What a great post! Well said. We didn't have a preemie either, but we spent 6 weeks in the NICU. Not what we envisioned for our parenting journey.

    This blogging community is wonderful. I love learning from other moms who have so much wisdom and insight to share!

    And I cannot wait to hear about your trip to KY - that is where I live, so I am intrigued. : )

  26. We met a family at the beach a couple of weekends ago - I went over to talk with the mom when I noticed her son and his (very cool) stroller. We definitely had the PT/OT/medical language in common and her other, typical kids fell in with mine while we talked programs and states we might want to move to (just for the programs for special needs kids!). She was the brightest spot in my summer to date.

    I think there's something so simple about relationships between parents of special needs children - you don't have to explain any behaviors and everyone's typical kids are so accepting and helpful. It was just a wonderful moment and made me feel less alone.

  27. I was just over on tulpen's blog reading about how she just read about the NICU show from your blog...small world, this blogosphere! Anyway, I love and agree with every bullet point on your list. One other thing we were discussing that joins some of us is the bitterness we feel towards "normal" kids and their parents. Ugly and shameful, but I can't help it.

  28. Thank you for posting this! I can totally relate! It feels good to have our feelings and thoughts out there for the whole world to see. I posted a link to this entry from my blog, so all of my readers can get insight into our feelings. Great stuff! :)

    Carly @

  29. I am a mother of twin 28 weekers who spent 3 monthes in the NICU and are 14.(one follows your blog,Kathryn)Kathryn has an moderate hearing loss in her right ear and SPD(Sensory Processing Disorder)Elizabeth has Turner's Syndrome.It is an female genetic disorder that results in short stature.This post had the tears flooding back.

  30. I have Asperger's Syndrome and it is part of who I am. I am the rejected stone, but that makes me the cornerstone.


Thanks for sharing!

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