I've never vomited because of nerves, until now. Brian and I both had trouble getting to sleep tonight, thinking about what tomorrow will bring, but after I finally fell asleep my arm being in an uncomfortable position woke me up. This, of course, started a torrent of thoughts, and well, here I am at 2 am feeling better for having a bit of literal upheaval.
We've been on the waiting list for this therapy program for a over a year. For all that time, just as we were looking forward to any chance of improvement for Simon, we've been dreading the hardship this would present him. He only has one good working arm and hand to work and play with (which is more than some children have and we are grateful!), but now we are going to take that away, and he won't understand why.
I remember when we first got the AFO for his leg, he cried and cried to wear it. He kept asking "Why Mommy?" but of course couldn't understand the answer. It broke my heart to make him uncomfortable, unhappy. And that, we could take off for breaks, and it didn't impede his movement but helped it. This... is full time and meant to make things more difficult.
But. He got used to his "super boot." We will get used to this, too.
Writing something like this takes a lot of patience and grace--both of which I believe that you have. I look forward to reading about your adventures here. I wish you all of the luck in the world with your son's treatment and therapy.
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Brandi.