Sometimes it feels good to have an answer, even if it’s a hard one. My daughter’s health has been a mystery to us for the last six months, and in some ways for the last two years, and while we may have some direction now, the road ahead is complicated. Honestly, just thinking about it makes my chest feel tight. But there is hope, as there always is when the path we’re on suddenly takes a left turn into uncharted territory.
Even within this I have an immense sense of gratitude. Because my daughter’s condition, most likely, is treatable. She will be well and whole again, albeit with some inconvenient limitations. But that is all it will be inconvenient. Not every family is so lucky. While our lives will become more complicated, they will continue to be good and in many ways privileged. For the first time in our married lives, I don’t have to worry as much about how to pay all these medical bills. I can focus on the care and therapies that all of my children need. I realize I am very lucky but sometimes I also feel guilty.
Sometimes when we feeling powerless gratitude is the best response, but perhaps not the only one. I want to do something, not just for my daughter but for other kids like her, ones that don’t have the access of the resources. Without a parent to push and advocate many of my daughter’s problems would have been written off by well meaning doctors who simply didn’t know her well enough to realize she wasn’t herself and hadn’t been for a long time. I even questioned it myself but I wasn’t willing to settle for how things are, that this is how it would always be.
No one wants to be told their child is sick or has a disease but with it comes a sense of relief. The symptoms are real, we weren’t imagining or overreacting. (Though in many ways I would still have been happy to be wrong). But the hope is palpable because if all the initial indications are correct, she will be happy and healthy again soon, and for the first time in a long time, I can see a future where my daughter and I are teammates and not adversaries.