Have you ever seen the animated film, Finding Nemo? Remember Dory, the fish who tries to help Nemo but can never remember who she is (beyond her name) or where she’s going? Despite her serious memory issues and lack of direction, Dory never gives up. Never loses touch with her inner optimist. Never quits. Her mantra is “Just keep swimming.”
Dory, as it turns out, is a wise fish.
It’s week four after finding out that the root of Mika’s autism (along with so many other seemingly unrelated issues) is Trisomy X (Triple X Syndrome). When you think about it, the diagnosis hasn’t changed much for her, so you wouldn’t think it had changed much for me, either. Surprisingly, however, I’ve gone through a range of emotions that I hadn’t expected at this stage.
First up was an enormous lifting of guilt I hadn’t even known I carried with me. Well, I’d known I carried it way back when the autism diagnosis was first given to us, but I thought I’d dealt with it (and left it behind) years ago...the way I should have done. Turns out I was wrong, and a little part of me still felt responsible for somehow ‘breaking’ my daughter. (Was it something I ate? Drank? Took? Did? Didn’t do? Should have done?) Sounds ridiculous, right? Because it is ridiculous—and if you’re feeling even remotely the same way, I want you to stop. Now. Because in all the research I’ve read on autism (and believe me, I’ve read a lot), I’ve never come across anything that connects a mother’s actions to the cause. So no, you didn’t break your child, and you deserve better than to go through life carrying the invisible weight of guilt along with all the other things you need to manage. So seriously...stop. And then give yourself a hug from me, will you? A big, big ‘you’ve got this’ kind of hug, because even if you don’t feel like you’ve got it, you have. I promise.
The second big emotion that caught me off guard was sadness. A deep, profound sadness that bit to my very core and weighed me down as I hadn’t been weighed down in a very long time. Because it turns out that alongside the guilt I hadn’t known I was harboring, I was also nurturing a hope that somehow, somewhere, I might find the magic wand that made everything better...and nope, I hadn’t known I was carrying that hope, either. Or at least, I hadn’t admitted it to myself. I was sure I’d stopped trying to ‘fix’ Mika years ago; sure that I’d accepted her for who she was. And consciously, I had. I’d become her greatest advocate and facilitator, and I’d stopped (mostly) hovering over her. But subconsciously? Not so much, as it turns out. So finding out that there was something as concrete as a genetic disorder behind her difficulties was...daunting. Sobering.
I can do a lot as a mom: I can research the heck out of things, I can find tools and tips and tricks that help, I can watch for new treatments and ideas, I can offer support and unconditional love, and apparently I can harbour invisible guilt and hope for years without even knowing it.
But I can’t fix genes any more than I could fix the autism, and there really is no magic wand...and yes, that made me sad.
If there’s one thing I am, however, it’s a pragmatist. I let myself wallow for a week or so (I called it processing at the time, but no...it was definitely wallowing), and now I’ve picked myself up, dusted myself off, and I’m back to the business of advocating for my daughter. Not trying to fix her (I swear!), but trying to make life a little more comfortable for her—a little less brutal.
I’ve done a ton more research, and I’ve stumbled across a couple of new treatment ideas that might help, particularly with the anxiety, which is our most pressing concern right now. We also have several upcoming appointments (geneticist, occupational therapist, and naturopath) that will give us more information and hopefully some direction. Our primary focus is on healing the damage done by her time in Toronto, which was far more extensive than we realized (our family doctor has diagnosed
PTSD) and is going to take longer than any of us—Mika included—had anticipated.
In the meantime, I’m channelling my inner Dory and making her mantra my own: Just keep swimming.
Because sometimes, in this messy ocean of life, that’s all we can do, right?
See? I told you. Smart little fish. ;)