Wednesday, January 19, 2011

In the same vain...

In the vain of the last post I wanted to write a little bit about our new realities. When Abby was diagnosed in utero with a strange cluster of brain abnormalities we were told that she would likely never walk, talk or think like a typical person. This obviously shook our entire world to the ground. It took us a long time, many struggles and sleepless nights and so much work to get accustomed to the new life we were about to have.

While we were going through the process of uncovering her diagnosis we read as much literature as we could get our hands on. I spent hours reading about all of the potential symptoms that she could experience as a result of her abnormalities. As she got bigger we started to see them. She didn't hold up her head on time. She didn't smile on time. She couldn't roll over or sit up or crawl. She didn't walk until we finally invested in a walker. She couldn't gain weight. She flaps and spins. Her eyes crossed.

There were other symptoms the literature referenced but we didn't see any of it. Mental illness, OCD, anxiety disorders, sensory disorders (which we did eventually see), problems with vision and hearing, obsessions and fixations, social problems, and on and on and on. We considered ourselves so blessed that her troubles were motoric and we could work on them with therapies and equipment. So we worked and worked and worked. And every day we saw very slow but steady progress.

And then we saw the wave coming towards us. First she had to count during certain anxiety provoking scenes in TV shows and movies. She would have to count to ten ten times. Then she started withdrawing socially. The flapping and spinning increased. She has to have her things in a very specific way or she cannot function. And so many more.

We didn't prepare for this. We weren't ready. It was like getting blindsided. Bring back the walker and the braces and the helmet. Those things were so easy, so available. But an emotional mess... what the hell are we supposed to do with this. We have no specialists waiting in the wings like we did for her eyes and ears and legs and feet. There was no army forming to battle the next problem. BLINDSIDED.

So instead of going to battle armed and ready we were surprised in our sleep. We are scrambling. We are searching for specialists and appointments and therapists. They are so hard to come by... at least the good ones are.

I guess life truly is never what you expect. Just when you think you have it all figured out you realize just how little you know. Thankfully I am ready to learn.

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