Seven months after Ella’s legs got heavy and then stopped working, we went to our final doctor’s appointment. We’ve decided to stop looking for an explanation and diagnosis. We’ve had to make peace with the idea that we may never know for certain what happened to take her legs from her.
We have seen 7 neurologists, 2 psychiatrists, 1 neuropsychologist, 2 neuro-muscular specialists, 3 rheumatologists, and now an infectious disease doctor. They all say the same thing, “I don’t know. I’ve never seen or heard of anything like this before.” She is truly a mystery that no one knows how to solve.
Our best guess is that it is the result of a viral infection that began as a cold that last week of March. (We suspect enterovirus D68.) Because of an initial bad diagnosis followed by an appalling lack of curiosity on the part of the specialists we saw and attempted to see, we will likely never know for sure. By the time a doctor agreed that something was actually wrong and that a virus seemed the likely culprit, any trace of it was long gone from her system. We are at the point of guesses and hypotheses. We’ve gotten to the place where certainty may not ever exist, and we have made the prayerful decision that there is nothing to be gained from continuing this fight.
At the end of Wednesday’s appointment, the last doctor took me by the hand and said, “It’s time to stop. If there were something growing, we’d see evidence of it. If it is indeed viral, it will either get better or not. There’s nothing we can do to encourage that right now. Ella is a happy kid. She’s also done. You can look at her and see it, and she says it flat out. ‘My mom wants to know, but I don’t care. I’m just tired of doctors.’ So I’m telling you that it’s okay to quit. It doesn’t make you a bad mom to be finished. It’s time to help her learn to live.”
On our way home, I asked Ella how she would feel about not looking for answers any longer, about simply being a paraplegic. She answered, “I like my life. I have friends. I get to do stuff. I’m good where I am. The nicest people I’ve ever met are in the wheelchair community, and I’m happy to be one of them.”
And with that, we stopped fighting the unknown. For the first time in seven months, I’m headed to bed without my laptop. There won’t be a marathon medical research and study session until 2 am. I have no experts to email, or terms to define. The only book on my bedside table is a novel, and I will actually get to read it.
Next week, our schedule is wide open and clear of any appointments. Our lives are once again our own, and we are reveling in the freedom of it.
**Thank you to all of you who have followed this journey and held our family in prayer as we fought our way through it. Your prayers have been our strength, and are worth more than you will ever know.