Undiagnosed Children’s Day

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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.

11 thoughts on “Undiagnosed Children’s Day”

  1. Oh man, Heather. I had no idea that Aiden didn’t have a diagnosis. I guess I just assumed that he had CP. WOW. That is really hard. You just have nowhere to pin yourself, nowhere to feel really included. Man.

    Well, if it makes you feel any better, I consider you part of my SPN mamas group!!

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  2. Shasta – Thank-you and I totally feel part of your group. I can be pushy that way and find room for myself. Lots of people assume he has CP and sometimes I just go with it. I’ve even had doctor’s assume that. It’s enough of a catch all diagnosis that we fit close enough but also not close enough for the state to care when they’re doling out services.

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  3. Thank you for this! My “mystery boy” is about to turn 4, and I *still* trip and stammer over questions about him. It’s very lonely and frustrating — what would I do without online mamas in the same boat?

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  9. I am right there with you. Tess has that stupid box checked off with CP as if that really means anything for her or us. “We need a label so she qualifies for services” is the refrain. I never know how to answer a direct question of “What’s her diagnosis?”. Tess has an “unknown genetic condition” which has never been found in any other person as of yet. When her very kind geneticist at Children’s finally told me one day after my asking for the millionth time what her diagnosis was and when would we know, “She is your daughter. A diagnosis would not change who she is to you. If I gave her a diagnosis, she would still be the same exact child you walked in here with before you knew.” And then it hit me, the diagnosis I so desperately was seeking was for ME not for Tess. I was the one who NEEDED the answer. A Special Needs version of “What to Expect”. A place where I felt we belonged. And man oh man, did I want a group to hang my hat in. I am very grateful for the insight that I got that day from that doctor because it really helped give me some much needed perspective, but there are still days where the “unknown” is a very lonely and scary place to be.

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