Undiagnosed Children’s Day
I’m not done introducing you to my friends with Epilepsy, nor do I think I’ll ever be done educating others on that topic. However, we’re going to switch gears for a moment to the upcoming Blue Day or Undiagnosed Children’s Day on April 13th. If you recall, we did this last year and it’s a totally made up day (by me) that we can recognize again.
I had a wonderful pregnancy with Aidan and an even more fabulous delivery. He cried and cooed and did all the precious newborn things, except eat. That, and the eventual lack of breathing prowess, led to a three month stay in the hospital.
I distinctly remember telling the nurses that we were only there for the weekend. He just needed an antibiotic. I believe it was after week two that a nurse had a sit down with me and spelled out that the NICU is for really sick babies.
Then the tests began: EEGs,EKGs, blood work, MRIs. Oh, you’d like a piece of his muscle too? Help yourself. While I was always told what they were testing for, there were also a few times that I was told they probably had a diagnosis, and then they didn’t.
Aidan’s diagnosis is what I thought we were waiting for. Figure out the name, give him the pill, we’ll all go home and live happily ever after. I was shocked when they said they’d done all the testing they could and they wanted to send us home. I was supposed to be elated, right? How was that even possibly with so many questions? When will he get better? How will you fix him? How do I know how to take care of him?
The whole “undiagnosed developmental disability” thing happened slowly, much like a gentle slope you didn’t realize you were on until you hit the bottom. The bottom: left behind by state workers who need to check a box, left behind by the moms who said, “but you must know what caused it,” left behind by the support groups who rally around kids with CP or Down Syndrome (ok, to be fair, I’ve met awesome moms who have asked me to come to their groups anyway), left behind by foundations that research specific diseases. Alone.
Aidan’s issues are a problem, make no mistake. He can’t talk so I don’t know what’s in his precious heart. He’s worked harder than anyone I know to walk. He’s missing out on peer friendships. Of course he’s made tons of progress and that’s what I focus on most of the time.
But for today, I see the unknown…the questions that no one can answer.