“…when you have eliminated the impossible, whatever remains, however improbable, must be the truth…” – Sherlock Holmes, “The Sign of Four” by Sir Arthur Conan Doyle
For years, the question “What does Maura have?” has come up. First, it was us asking it. Then, it was others – friends, therapists, schools, strangers.
People – including us – want to know what causes my daughter Maura’s issues – her cognitive issues and seizures and other things. The answer has always been “I don’t know.”
When Maura was three, my husband Josh finally asked a doctor point blank “Do you think she has something?” The doctor answered “Oh yes! I know she has something. But what that something is, you may never know.”
See, my daughter’s condition isn’t really that sexy to medical researchers. She’s pretty healthy, she has no regression, she makes progress – even if it’s slower than a snail on a dry day – and there aren’t 5000 Maura’s running around the metropolitan area. So it’s just not worth it to those medical researchers to investigate why my daughter is the way she is.
That is the harsh reality we deal with constantly. Another doctor did reassure us that after a while, and after lots of testing, not having a diagnosis is actually a good thing – because it means we’ve ruled out a lot of the more scary, devastating diagnoses. Which is true. But it doesn’t make you feel less stupid answering “I don’t know.” to people’s questions.
When your child doesn’t have a “proper” diagnosis, the world becomes…well…more interesting. You live your life viewing things differently. People loved to send me the "Welcome to Holland" piece – which can be wonderful and inspiring…except we never made it to Holland. We were stranded at the airport, still waiting to see where we'd end up. I would have killed to get to freaking Holland.
Also, when your child doesn’t have an overall diagnosis, people become very…opinionated, and are suddenly experts on diagnosing others. There are those who ask you if you’ve checked out this or that rare syndrome – usually it’s something I have already researched. If it’s done in a nice “hey, I want to help you out!” sort of way, I never mind. Heck, I find myself in that position sometimes of saying “Have you checked this out.”
But other times, it’s “Well, are you SURE it’s not X?”
“Are you just AFRAID of an X diagnoses and are in denial?”
No. Seriously. I’ve been asked this. It’s usually one particular diagnosis which is very much in the news these days. When my husband was once confronted by this, and explained patiently that no, she didn’t have X, we tested for it, the tests came back normal, the person said “Well, how well do you trust your doctor?”
Um…more than you, complete stranger who’s never met our daughter. (Which is not what my husband said, he was nicer about it.)
People who go down this route, grilling us over what they thing our daughter has, don’t understand a very basic principal – if you spend literally years looking for a diagnosis, you have read a lot of scary shit out there and you pray that’s not what your child has. Meanwhile, stuff that makes the average parent quiver in fear? That stuff is completely doable in your book. Especially if it comes with treatment plans and other parents going through the same thing.
Imagine your child having a problem and having no idea how to fix it. That is our reality. We know she has “something”. We know that “something” includes delays and seizures. We don’t know how long she’ll keep progressing, or if she’ll develop other health problems. There’s nothing telling us “Kids with X usually potty train by age 10” or “Children with X will never learn to do this.” There’s no statistics, no support groups, no funding. Heck, at one point, the state of Michigan didn’t consider Maura disabled. Why? Because she didn’t have a “qualifying diagnosis”.
So when people insist we must be in denial because we won’t look into what they think Maura has, it doesn’t show our reluctance, it shows their ignorance. Because if they lived a year or two in our shoes, going along the best we can without a road map of our child’s future, they would never ever ever dare to say the word “denial” in our presence.
When Maura was seven, we took a trip to the Cleveland Clinic to see a specialist, in hopes that maybe this doctor could look at Maura and go “Oh! I know!” Within ten minutes of meeting with the doctor, I knew our journey was in vain. I decided then that if none of the tests came back with answers, I was going to give up and start telling people Maura had Sherlock Syndrome – as in “it’s a mystery to us” and a play on our last name – and call it a night on trying to find out what her “something” was.
All the tests came back normal. So, Sherlock Syndrome it became.
That visit was seven years ago. Maura still has Sherlock Syndrome. No one has found anything new, and quite frankly, we've moved on from all the testing. We have lives to lead, and things to learn, and at this point, there's no denying she's disabled. Besides, we've gotten used to life with Sherlock Syndrome, and to be frank, we make it look good! There's no one saying "Well, children with Sherlock Syndrome don't do that." No, we get to decide what Maura will try - and that's pretty much anything she wants to try.
If, someday, we do figure out what Maura has, or what’s causing Maura’s issues…and it doesn’t have a name…we could still call it Sherlock Syndrome. I think we’ve earned the right to name it after all these years.