Not to overdramatize a situation that, while disturbing, is admittedly not a major crisis – Sarah Kate’s leg will heal, the scar will not be enormous, and we count ourselves lucky that it wasn’t much, much worse – but I still feel as if the rug has been pulled out from under me.
When she was an only child, her challenges were everything.
After Nathan was born, things changed. My outlook shifted from having one child with special needs whose concerns were not minor but were largely contained to one small family of issues to having two children with special needs, one of whom was affected in every cell of his body.
Sarah Kate seemed a lot more typical in that light.
Part of my change in outlook was simply a matter of timing. Sarah Kate had achieved most of what we expected of her, was mostly able to navigate the world, and was becoming independent. It seemed she was finally traveling in an orbit that was at least in the vicinity of typical. The other half of the equation was the realization of all the many problems Nathan’s extra chromosome might bring – not just developmental delays, but medical concerns, as well.
Despite our struggles this year with speech, potty training, growth spurts, and the like, until Monday evening I was rocking along with life in a shaky equilibrium. We knew what our normal was, and we knew what the obstacles were, even if we didn’t always know how to deal with them. It wasn’t a walk in the park, but it was our normal and I knew how to handle it.
Then the paradigm shifted without warning.
This morning I’ll take Sarah Kate back to the doctor for (more than likely) another round of debridement. We’re awaiting an appointment date to see a neurologist for some follow-up testing on her nervous system to determine what and how much she is (or isn’t) able to feel.
What comes after that? I have no idea.
Is this new development a crisis, hardship, or tragedy? No. But it’s one more scar from the battlefield of the special needs life – and not just a figurative one this time.
UPDATE: We went back to the doctor this morning and upon arrival they ushered us directly into the procedure room, rather than the exam room, which wasn’t encouraging. BUT! When the doctor came in and looked at it, she was visibly surprised and happy. No debridement necessary! It’s healing much better than she expected and unless something changes we don’t have to go back – just continue taking the antibiotic and some Motrin to ease the inflammation. She even cleared her to play in her softball game tonight, which is a relief, because at least a couple of the girls were going to have to miss because of an all-day field trip to the state capitol – without Sarah Kate on the roster, they’d have had to forfeit. So good news all around…