Tuesday, August 4, 2009

She's not disabled, we're just visiting

As we are on our way in, a mother carries her baby out on her hip. Baby has a cast on her leg. Baby is nonplussed, mom is on a cell phone. I am not nonplussed, I am shattered. On the way out, a salesman is on his way in with an adult sized prosthetic leg. I check my legs just to make sure I've got two to go.

Today my baby had her evaluation for services at a Shriners Hospital. Hemiplegia as a form of cerebral palsy is considered pre-orthopedic because if left untreated, spasticity in muscles will create an orthopedic condition that requires surgery, so my daughter can get services there even though she doesn't actually need their higher end stuff. We get to skip things like the conversation I overheard at the nurses desk "we'll do the muscle biopsy before the skin." Our physical therapist had warned me the visit would last about four hours, so at least I was prepared for that, but I cried six times today before I even arrived, then lost count of how many times I came to tears with the nurse, the care coordinator, the orthopedic surgeon and the neurologist. I start each new interview with "I am a cryer. You can write that down if you like." It will be true the next visit also, and maybe the one after that. The staff were delightful and remarkably calm. Something about being funded privately really changes how they handle patient time and interaction. The facility is new and clean and quieter by far than the other children's hospital. I did enjoy the way the young patients interact. Hannah got a wave from a young man flying by in an assisting device I don't know the name of yet, I can see how the wide open atrium room for PT will be great for us when we teach her to run or to ride on a toy, teach her things the rest of our kids can learn in the living room or backyard.

I realize these nearly four months we've been working on this have been an easing into the world of getting ability out of disability. Hannah has not stood out in her nursery as anything but super cute and smart, because only now at almost twelve months are her peer groups jumping up to creeping and walking really making her look different and stationary. I ponder how it will feel when she sits in the middle of a room of walking babies. Its a damn good thing she has those advanced verbal skills. Maybe I should get that informercial product "Teach Your Baby to Read" so the toddlers will rely on her for advocacy for snacktime rights and notepassing during naptime. I know she'll use her powers for good.

If you are lucky enough to have a free pediatric orthopedic hospital in your city when you need one, well, fantastic! It's that whole "if you need one" part you have to watch out for. I knew I needed to be there, and I am glad I went, but let's just own up here - I was not prepared for the vision of the wheelchair chop shop, where devices are modified to meet the needs of each patient. This adds up to a lot of spare parts. I wasn't prepared to see the kids in the beautiful, clean and well lit therapy room and see my future. Furious is not too strong a word for how I feel. Terrified that I will fail to to get the job done in every way that matters for my daughter. Horrified that all the "special" time I spend with her will be the drives to Shriners, the Early Intervention meetings, the therapy sessions, the coaxing her to wear a brace or do the next move or try the next step. Sorrow, for the good health she doesn't have. Grateful to have all this help and furious we need it.

Our prognosis is still good, in fact great, but it was again emphasized to me that not all kids like this crawl, and not all kids like this get out of the brace she will certainly benefit from when learning to walk. Um, this part was new. Every time folks tell me how great she is, I think that she'll be one of those people you hear about who have CP but you almost can't tell. I didn't think the brace would stay. And it might not. And they'll custom make it after casting her leg and we won't be using the equivalent of a 6-12 month old baby shoe. Hooray! And oh fuck I need air. It was the best of times, it was the worst of times.


  1. I can't even imagine what you're going through, and I'm not going to pretend I can. But I CAN say that I can tell you love her so much, and that will communcate itself to her regardless of what happens during the time you're spending together. You are strong, she is strong: I have no doubt that regardless of prognosis and reality, you will both come through this with grace and beauty.

  2. Must be difficult to say the least. I hope it goes well this year and the prognosis stays good.

    -A Modern Mother

  3. Dude. It's terrifying shit. Cry all you want. You never, ever have to like dealing with any of it. How could you?

    I've gone through one special needs child and have been blessed with potentially another. The fact that I know the system this well is at the same time awesome and awful.


    Email if you want to talk.

  4. This is gorgeous and beautiful, and I'm adding you to my reader. :)

  5. Good luck - Aunt Becky is right, cry as much as you need to in order to get through it. Bravo for seeking the treatment your baby needs even though it's emotionally difficult.

  6. Hannah is so lucky to have such a wonderful and devoted mother. This love that you have for her, and everything that you do for her will make her so strong, and give her the ability to conquer all of life's challenges. Sounds like you also have the strength to handle all of life's challenges. You have two very very lucky little girls!

  7. lovely post. so real and honest. I feel this anger/sadness/frustration/dispair/madness sometimes too.

    thanks for putting it so eloquently.

  8. I'm a cryer too. I'm pretty sure they've written that in all our notes...

    Sorry you have to go through all this. I'm nodding my head in empathy all the way through reading it though, so know you are not alone.