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Tag Archives: undiagnosed

Even among the extraordinary, we’re still a bit ordinary

7 Jun

“Medical science is just not interesting in kids like your daughter.” a neurologist once told us.

What I’ve come to learn is something I’ve always sort of known. We’ve never been interesting enough.

Sounds silly, because if you’ve met us, you know, we like to keep things different. But when it comes to disabilities and special needs, we’re kind of bland.

Oh, don’t get my wrong, I’ve always been thankful for the blandness of Maura’s issues. Having bland disabilities means she’s healthy and happy and able to do so much. Ironically, that’s what makes us a bit uninteresting.

Maura’s needs have never been sexy or trendy enough to get interest from the medical community. Maura’s disabilities are too generic for strangers to really care. We have no big diagnosis story to bring out. I can’t tell you what it’s like to have a doctor reveal The Something Maura Has – because we’ve never figured that out.

Reality is, for the first five years or so of Maura’s life, everyone downplayed Maura’s disabilities. Told me I was overreacting, that Maura would be fine. By the time we all realized she wasn’t going to be fine, we were all used to things the way they were, and there was no crisis moment to deal with.

And yet, I can also look back and realize that part of our perceived ordinariness is my own fault. I was raised in a “suck it up kiddo” atmosphere. If you skinned your knee, you grabbed the Bactine and a band-aid and dealt with it. When the choice is either laugh or cry, I choose to laugh. I was trained not to show my darker feelings. I still don’t show my sadness. I will joke at a funeral before I’ll cry at one.

So there I was, being calm through it all, finding the humor in situations, carrying on with life, and embracing each new thing thrown at us. While other people would mourn the introduction of ankle braces, I was giddy about them. Maura needed the support and when we got them, I was happy for the difference they made. When she developed epilepsy, I remained calm, and within a few weeks, noticed so many developmental gains that I all but hugged the bottle of seizure medication for allowing Maura to do more.

And Maura was such a happy little kid, smiling with her whole face, always willing to try something new, working hard to keep up with her siblings.

We were a pair – a smiling happy pair. Obviously we weren’t in crisis, obviously life was okay. There were others who needed more attention than us, others with more problems, more issues, real issues.

When I did crack, I would crack spectacularly. One can’t hold it all in and not eventually crack in a normal way. No, I would crack, spectacularly, garnering interest and concern for a moment. But since my life motto seems to be “Never let them see you cry”, I’d dry the tears, take a breath, and keep moving forward.

Outwardly, we were pretty normal. Yes, eventually, everyone got on the same page that Maura, indeed, was disabled. But getting to that point took years. Not a day, not months, years.

And so, even in our extraordinary life, it all became ordinary.

Because we treated it all as ordinary, people followed our lead and treated it as such. Because we didn’t make a tragedy out of things, no one else did. Because we included Maura in everything, people accepted her presence where ever we went.

And those are all good things.

But, in doing all that, we’ve sort of been seated in the back of the room when it comes to families with special needs. It seems like I’m complaining, and I know, I shouldn’t. But dang if at any point, I could have used a meal train or someone coming to clean my house or just watch my kid.

Instead, I ordered a lot of pizza, had a messy house, and dragged four kids about town. Because stuff still had to be done. Life still moved on, and no one was going to help us out. I wasn’t one to ask for help – I’m still not – so again, some of the blame for not having any help falls straight onto my lap.

I guess I make the extraordinary look ordinary, and Maura has inherited that skill from me.

The fact is, more people find the fact that we lived in Ireland more interesting than Maura’s disabilities. I don’t know if that’s a good thing or not. Or maybe it’s because she doesn’t have a diagnosis that we aren’t as interesting as something like autism, which gets all the press time, or Down Syndrome, which has a lot of warm fuzzy media coverage. No diagnosis that affects one lone girl isn’t as interesting as a syndrome that affects 1 out of 100 kids. No one noticed when Maura’s seizure meds tripled in price, but raise the price of an EpiPen and people lost their damn minds (for good reason.)

Maura’s disabilities affect her, and her family. They don’t really spread to the wider world, not in a way anyone can test for. Not in a way medical science is willing to study and decipher. Not in a way the public can do an awareness walk for, or have a cause to donate to.

And I am grateful for that. Maura has health and happiness and the ability to go where ever she pleases.

But while we go about our ordinary lives here, please, don’t forget, it’s also extraordinary.

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Life with Sherlock Syndrome

11 Feb

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.

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