Friday, May 16, 2008

A little more about our day at the park...

Around this time last year we took C and A for a NICU follow up visit in Missoula. We go ever six months for a checkup with their neonatologist, a physical therapist, and a couple other's that I'm not really sure what they are. Maybe speech and a psychologist or something. Anyway, at that time they loosely diagnosed both of them with mild cerebral palsy. They had previously said that C had it mildly in his right arm/hand, because he didn't use it nearly as well as his left, and also had high tone in it. At the more recent follow up, they said that his arm was now within normal functioning capacity and he would probably have no problems with it in the future, which he hasn't. He uses it just fine now, and has normal tone.

At this visit last summer, though, they decided they both had it in their right legs. C had high tone, A low tone as well as a very weak core. C's diagnosis didn't really surprise me, because he seemed pretty stiff in his right leg. Avery's, however, did. I was absolutely devastated. I still get butterflies in my stomach just remembering that day. I cried all the way home, feeling sick to my stomach. I was completely shocked, not having any inkling that A had any reason for walking so late.

When we got home, we started physical therapy with the lady they still see right away. Within months, C was walking all the time and A just starting to. They have since improved tremendously, although both with the use of orthotics. They are only supposed to have to use them orthotics until they outgrow them, and their PT, Leslie, has always believed that with strengthening and therapy they'll basically overcome/outgrow the issues they do have.

I don't know if I've always been in denial of the CP or just really strongly believed that they'd overcome the walking issues, but I don't generally notice that they don't walk the same as other two-year-olds. Also, we're not really around other kids, so I've never had much to compare them to. Since Cece started walking, though, I've begun to notice the huge differences in the way she moves versus the way C and A move. Also, yesterday at the park we were surrounded by a multitude of wild, healthy, average children.

As soon as we walked into the play area at the park, (after about a 10 minute walk from our car, which was only about 50 feet away) I felt extremely self-conscious about my kids. Because of his recent broken leg, C was only walking about half the time and crawling the other half. When he is walking, he's not walking well yet at all and you can just see the looks on others' faces as they watch us move across the playground. Avery walks very slow, and because her legs are still fairly weak she has a hard time picking up her legs as she walks on the uneven surface of the wood chipped ground. My first instinct was to grab them all and run, back to the car, back to the safety of our house where I don't feel these feelings, where I can't compare them to other kids, where I forget that they're not like other kids. I want to forget that while other kids run, jump and climb, my babies are struggling to just make it to the slide. While other mothers sit and watch their children play, I am in fear that a rambunctious boy is going to knock them flat on their backs. I hover obnoxiously over them, trying to figure out how to make this work fighting the emotions inside of me. I want to walk up to each woman around the play area who is staring at us and explain our situation, explain that my babies were born way too early, that they are fine, that they can stop giving me their pitying glances... and I still want to run. I want to protect my kids from the world, from people's preconceived ideas about who they are based on what they can see on the outside.

But then I look down, I see their grins, their pure joy as the realize that they can play, run, with other kids, and IT'S OKAY. That's what we're here for, for them to have fun outside on a beautiful day. They can crawl in the grass, the dirt, dump wood chips in each others hair, and I won't stop them because that's what we're here for.

I realize that it's my preconceived ideas about people that are bothering me. I am the one assuming people are judging, pitying, whispering. I realized that it's my own issues with my kids' difficulties that are making me feel this way - I'm ruining my own day.

It's so very hard for me to talk about this, but I think that that's why this topic still has me in tears whenever I acknowledge it. I know at some point I have to come to terms with the fact that my kids may always have a visible disability. I know at some point my thankfulness for who they are and what they are becoming regardless of that disability has to override my fears and worries for them.

I figure blogging about it is a start...


Becky said...

But then I look down, I see their grins, their pure joy as the realize that they can play, run, with other kids, and IT'S OKAY. That's what we're here for, for them to have fun outside on a beautiful day. They can crawl in the grass, the dirt, dump wood chips in each others hair, and I won't stop them because that's what we're here for

Kelli, how beautiful and how hard.
They are amazing. You are amazing. I tear up as I read it -- I cannot imagine the swell of feelings you have. I want to say much more but don't have the words. I know those feelings, those feelings of measurement, of comparison, of feeling judged, and my how they suck. That you overcome them and see through them is awe-inspiring.

Kristen said...

I admire your honesty and strength, Kelli. Those kids are lucky to have you as their mommy.

weaver said...

Kell -
What an amazing description of what you're dealing with. I can honestly say that you're kids are and inspiration to many; you and Carl are even more of an inspiration to us as future parents - we look up to you a lot. can do all things through Christ who strengthens us.

cv said...

Thank you so much for your post, your description of the multitude of feelings and the struggle you have to begin talking about it are so candid.

Never forget that there are so many people who care for you and are there to help you, even if it's just to listen or read and send you good wishes and support.

I'm glad that your kids are progressing and that they are getting good treatment and therapy, that's just so key. The body and the brain are still so unknown and so much is being discovered every single day.

aola said...

You are brave! You're brave to write about it and more brave to allow them to just be who they are and not limit them.