I think the one thing I’ve never gotten used to with Maura is the fact that she has no diagnosis. She has a laundry list of stuff, but no handy dandy label to stick over the list and say “THIS is what we’re dealing with!”
I’ve gotten comfortable with this status. I’ve had to, it’s been a constant companion since September of 2004. I’ve even given it its own name – Sherlock Syndrome. As in “It’s a mystery”. It’s also a play on our last name, and I like waiting to see who gets the connection.
In a way, I’ve been glad to not have a name, a label, because it means I’ve learned a lot about all sorts of special needs. I’m not hiding out in my own little corner of the medical world, with others like us. Because there’s really no one like us except for the few people who’ve emailed me with “I thought I was alone!” It’s someone amazing to me how segregated the special needs world can be. All the causes are so specific. “Help us raise funds for OUR group!” “You can get this therapy, but only if you have THIS label.” “Let’s get insurance coverage for THESE kids.”
It sometimes gets lonely in my corner of the world. Because my child – and the other children like her – deserve the recognition too. We deserve to have some celebrity promoting awareness for all the kids who are falling through the cracks because no one can figure out what form of Sherlock Syndrome they have. We need to be interesting to medical researchers. We need insurance coverage too.
I guess small numbers are just not that sexy.
I knew that. Our neurologist warned us years ago, that we’d probably never know what Maura had because medical research isn’t interested in kids like her – kids who are relatively healthy, who aren’t regressing. I have had years to process that, to witness the truth of it.
But it was just recently that I got smacked in the face with it again. February 28th is Rare Diseases Day. Raising awareness for rare diseases. It had a little survey you could fill out, about life with your rare disease.
And I realized – I don’t even have the ability to claim it as a rare disease – because one of the first questions asked was “What is the name of your rare disease?”
I wrote “Undiagnosed”.
I know whatever form of Sherlock Syndrome Maura has is rare. If it wasn’t so dang rare, we’d know by now. Meanwhile, I’ve learned about all sorts of rare diseases and syndrome – a special needs parent can throw out most anything at me and I’ll go “Oh, I’ve heard of that.”
Because after eight years, I can’t help but still look. Still wonder. Even though I’ve accepted it, I still keep searching.
And yet, still, I will keep fighting for ALL the kids. Not just the ones with This Syndrome or That Disease. My mantra is that ANY child who needs help should be getting it, no matter what label they may or may not have. ALL children deserve the best chance at life. Whether they are the Diagnosis Du Jour or label-less.
That’s my cause. That’s what I promote. Children like Maura need to have a place in the Great Big Cause World.
A couple years ago, my husband and I came up with the word “wonderpuzzle” to describe Maura. Our goal was to unite others who also are still searching. But then we moved, and life got in the way. (It’s amazing how much moving to another country can throw you off-track!) But recently, I’ve felt the need to get back to Wonderpuzzle. I’m going to start reviving it via Facebook. Because I love Facebook (well, when it’s not changing my privacy settings!)
So if you’re feeling alone and you have a little Sherlock Syndrome person of your own, feel free to join me over on Facebook. I have a little group there for Our Kind (it is a closed group, to keep spammers at bay) – if the link doesn’t work, look for Wonderpuzzle on FB.