Wednesday, March 17, 2010

Sugar needed

When Seth first began walking, he had that adorable drunken sailor gait that most babies have. He'd walk along and then, at the drop of a hat, he would fall as though an invisible hand had shoved him aside. We all thought it was typical new walker stuff.

On the way to therapy today, we ran into a friend of ours whose daughter also has Cochlear Implants.  He was asking how Seth is doing and, as I gave Seth a boost so he could push the elevator button, I laughed and said "Oh, he's doing great! If he could just graduate from physical therapy life would be good!" We both laughed and he said "I'm sure it'll be soon, he's doing so good."

I wish I could go back to that moment, because I totally agreed with him. 

See, the thing is, as the weeks have gone by since Seth has been an official walker, he's improved in lots of ways. He doesn't hold his hands up for balance anymore. He doesn't rush headlong into things or tumble over his feet. He walks carefully, stopping often to regain his balance. He's not reckless, he thinks. 

But he still falls. No matter how careful he is, that invisible hand still knocks him over regularly. To deal with it, he's adopted a wide stance, feet farther apart than his hips, like a sailor. Walking is not effortless for him like it should be by now. 

And, as I learned today, there is a reason for that. As soon as we got in, his therapist and I sat down to discuss his latest tests and evaluations.

Seth has something called ataxia. It's basically a disorganization of voluntary gross motor movements. There are a ton of different kinds, some of which are degenerative over time, but for us to find out the exact etiology, he would need an MRI, which is a big no no with implants. His case seems to be fairly mild, so right now we're just trying to focus on what to do to help him deal with it. Ataxia can affect walking, arm and hand movements, speech, and even the eyes. For Seth at this point, it seems to mainly affect his walking and balance. 

His therapist was great today...we laid out a whole new plan for his therapy and started using a weight belt on him right away, which made a big difference immediately. After we put it on him, he walked all the way around the center without falling once. For some reason the weight helps his balance considerably. 

Of course, the downside is that now there's going to be one more piece of equipment to put on him, to cart around. Something else he's going to have to deal with. Something else to make him look different than the other kids. It could be worse. It could always be worse, but today I'm feeling pretty sorry for myself and for Seth. I felt like we were exiting the tunnel, and now I feel like we're backsliding into the dark all over again. I thought we'd be out of therapy soon, and now we're looking at being in it indefinitely. 

And I feel like such a whiner when there are kids dying and hungry and I'm all upset because my kid has some balance issues. But sometimes it doesn't take much when you've made lemonade over and over again...I'm sick of it. I don't want to anymore. I want Seth to be normal, not have to compensate for so much. This isn't fair. He's such a trooper...I just wish I could do this for him. 

When I'm done holding a pity party for myself here, I'll go and I'll order him his own personal weight belt and probably decorate it in some silly way. We'll do all the work we need to do to help him overcome this, too. In a day or two I'll laugh and say that it's nothing we can't handle. I'll remember that I'd rather have a deaf baby with a balance disorder who hears with CIs and walks like a drunken sailor than nothing but pictures to look at, year after year, of a baby I'll never get to hug again. 

This is better. But in so many ways, Seth's issues have been harder to deal with than Eli's death, because they just keep coming and he just has to keep dealing with them. Eli (as far as we know) was never in any pain. He never had to deal with the amount of things Seth has had to deal with, all the issues he's had in his 20 short months of life. I'm so proud of Seth, for just taking everything in stride, being such a happy little boy, in spite of how much harder he has to work for things. To listen, to talk, to walk. 

So tomorrow, I'll look for the silver lining. I'll dig the lemonade pitcher out of the cupboard. Tonight, though, I'm just sad that I have to find some more sugar for these lemons. 
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