So many special needs story start with “When we got the diagnosis…” or “On the day he was born, we knew he had…” or “The doctor looked at us with a sad expression and told us she had…”
I’ve read these stories for years now, and yet it just recently occurred to me that Maura’s lack of diagnosis has short-changed us in yet another department. We never got our Big Reveal Moment, where the diagnosis was clear and astounding, where we could have that defined reason to mourn all we lost. We never had that moment where we could call family and friends and say “Maura has THIS” and they could all rally around us, offer support, or choose to ditch us because it was all too much for them (hey, that happens too, it’s a reality.)
We never got our moment in the medical spotlight.
I know, it sounds silly, doesn’t it? And it is.
But it’s not.
For a couple years, we floundered about with Maura. We weren’t sure what she needed or what to ask for. When I did say something, I was told either things would get better, that she would catch up, or that I may be overreacting (which was then followed by the prerequisite “Other people have it worse” statements – which are never cool by the way.)
In a way, I felt we were illegitimate in the special needs world, the bastard red-headed stepchild amongst the legitimate blonde heirs. Luckily, I love red hair and have never wanted to be a blonde, so at least I was up for this role I was placed in.
Eventually everyone was on the same page – Maura was indeed disabled. I remember when she was about four, finally using the phrase “special needs” – as in “She has some special needs” – to explain her. I used that particular phrase because people understood it without me having to explain further – because there was no further explanation. It put us in a category that was recognized and fit us.
Then Maura was diagnosed with epilepsy, and any last naysayers were hushed. We were dealing with something serious, something out of the ordinary. We were indeed Special.
However, the time for the Big Reveal Moment was long past us. Even the diagnosis of epilepsy was more of a secondary diagnosis, versus an all-encompassing one. We were all used to Maura being different at that point. She was wearing glasses and ankle braces and diapers at age four. She wasn’t speaking really, or able to sit on a swing without accidentally falling off. She was definitely different.
And yet, the diagnosis of epilepsy gave me a moment – maybe not a Big Reveal Moment, but a moment none-the-less. I could read about it, tell people about it, have people know exactly the seriousness of this diagnosis.
But I didn’t mourn. I was long past the time of mourning. Instead, I was a bit giddy at the idea of Maura having something explainable, something that came with books and websites and a freaking awareness ribbon. Because it’s all about that awareness ribbon you know.
You don’t get a ribbon for “I don’t know what she has.”
And so the time passed. We embraced the idea of having a generic disability. I learned about the phrase “orphan disease” and a hundred different syndromes Maura didn’t have. Eventually my world expanded, and I started reading other people’s stories.
“The day we got the diagnosis…”
We never got that day. We never got that one definitive moment in time where someone said “THIS is how your life is going to change.” There was no crisis moment, no door closed so a window could open.
It just happened, like the grey hairs sneaking up on my head. One day, I looked at us and realized we had become a special needs family. That Maura was disabled. That this was a lifetime commitment. And somehow, I had come to terms with it all, little by little, as did everyone else around us.
Would it have been better if I had a Big Reveal Moment? I don’t know, maybe? Maybe not. Other people would have gotten it sooner, and it might have saved me some judgmental pain, as no one would have told me I was overreacting. Maybe I wouldn’t have gotten the “They have it worse” stories. I could have definitely survived without all that. I might have been able to better advocate for Maura in the early years, by saying “She has THIS, and studies have shown she needs THIS!” Hell, I may have gotten a meal train out of it for a week even, pasta dishes to heat up, maybe some ice cream
for me to emotionally eat to cheer up the kids.
But then it wouldn’t be my life if things went like it did for other people.
You can still send ice cream though. For the kids, of course.