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.
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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…
You guys are always in our thoughts and prayers. Give Sarah Kate a fist bump from us (and one for you, too)!
So glad to hear that everything went well at the doctors’ today! I just got caught up on this post and your last one…and I just want to add in my two cents and say that maybe you’re right that her lack of sensation is a result of her CP and not her SDR…something similar happened to me a couple years ago, too, and I never had an SDR, although I have spastic diplegia that is very similar to SK’s. I was at a chiropractic appointment and the chiropractor applied heat to my lower back. It was slightly uncomfortable but not unbearable. The next day, however, my mom saw that I had a burn on my back from the heat and she was shocked that I didn’t notice it! Reading about SK’s experience makes me wonder if this was the same kind of situation.
I will keep you guys in my thoughts, and I am so glad to hear that everything turned out okay!
That sounds exactly the same! Thanks for the info.