My husband and I spend a lot of time trying to figure out how our middle son’s Brain works. A rare medical diagnosis dangling over the head of a 6-month-old baby sends you into a tarot card level tantrum of predictions. But you’re not psychic and you can’t predict the future, so you set out as best you can to live in the present.
And that’s where your brain comes in. A way station without a road map. A holding tank where only so much information can be taken in before it seeps out in brave, brazen, and sometimes hilarious ways.
Remember those public service announcements some years back warning of the neurological effects of a brain on drugs. They showed an egg in a frying pan suggesting that a brain on drugs is like an egg frying in a hot pan. Well, if that is your brain on drugs, circa 1987, the special needs Mom Brain is an omelet cooked well and filled with ham, cilantro, bell peppers, more ham, hell, some bacon too, three cheeses, onions, spinach, roasted tomatoes, and more cheese.
It’s a brain filled with so much goodness onlookers begin to question how does she fit it all in, yet like any delicious dish of beaten eggs cooked until firm there is only so much this brain can contain before it needs to take a moment and fold over.
Will he walk, will he talk, will he live, will he love, will he have friends, will the world be kind, will we have enough money, will we have enough time? Sleep.
Is this email too long to send to his fourth-grade teacher? Inner voice screams “YES” so you edit and edit and edit again, but how can you edit your kid? So you push send. Breathe.
I should have gone to law school. It probably would have made all of the IEP paperwork easier. But when would I really practice law? I’m already behind on grading the papers of my own students while sitting in the lobby of my son’s occupational therapy. One of my students has finally overcome a significant learning hurdle. I’m immensely proud and wish I could tell his mom. He has spoken of his mom in his journals and how he used to hear her pacing the floors at night and how she quit her job, which she was really good at, so that she could make raising him her new full-time occupation.
It’s actually illegal to talk to parents in college, but I think of his mom. I imagine her barefoot walking off the adrenaline of her industrious brainpower. But he is here now. Learning differences and all, in my college English class, kicking ass. So I air-high-five a mom I have never met, but I accidentally hit my horn instead. I look around and realize nobody has even noticed. Because that is the brain of the special needs mom too. A lot of isolation, a lot of highs and lows, a lot of thoughts sometimes too lengthy to share with even those closest to you.
But the checkout clerk, at the grocery store, the one with the kind eyes, she knows all the scoop.
Years ago, she made the mistake of asking, “How’s your day?” How’s your day can go in a myriad of ways for the special needs mom brain. How’s your day could mean fighting back tears or desperately wanting to share the immeasurable details of a milestone your child has finally reached. But on this day, the “How’s your day?” came on the heels of a tri-annual IEP meeting, and when asked, the floodgates opened.
With rapid-fire enthusiasm, I told of the mic drop moments where we pushed and pulled and advocated as if we had indeed gone to law school and how eventually we came out on top. The meeting commenced with an emphatic (only in my brain of course) “How you like me now?” transitory sense of relief. Thankfully, there was no one in line behind me when the unsuspecting clerk asked about my day.
As a result, she listened, intently, and then she thanked me. Turns out her daughter has an IEP, too, which in turn sheds light on another trait of the special needs mom brain: You are magnetically drawn to your kind. You find each other in the store, across the globe, from blogs to baristas. You are a tribe without a name and that brain of yours is a magnificent machine of mayhem and wonder!
Are my other kids getting enough attention? I hope so. Are my other kids learning how to be compassionate, inclusive individuals? I know so. And there in lies the balance of it all. For every void, there seems to be a unique gift experienced through the intermingled mind of the special needs mom brain. Tiny victories become monumental achievements because they are hard-fought and remind you to remain faithful. On the other side of loss is life, and it is a life felt so intently that you laugh louder, fight harder, and dig deeper.
But if only I could earn Fitbit points for the moving parts of my brain. Before children, my tendency to overthink was a burdensome pastime, but now I am convinced it could be the superpower that fuels my bustling brain cells.
Paid the tutor (check). Rescheduled endocrinology (check). Forwarded referral to neurological ophthalmology (on it). Request sent to teacher for extra work (done). Music lessons (booked). Taekwondo badge sewn to uniform (Ha! Orders iron-on patches). Seven minutes to yourself (also known as a shower). Homework (check). Feed the ravenous masses (they clearly must not eat at school). Make invisible lines through an imaginary list. Add breathe to the list.
Recently my husband says he found a 21-year old who has the same condition as our son. He is happy, and he is whole, and on his website he encourages parents to never give up. I can see a sense of ease wash over my husband when he shares this news because the special needs dad brain is working on overdrive too.
The young man does mention that because of a late diagnosis he didn’t get a lot of intervention that he wishes he had, and suddenly I want to contact him. He is seemingly doing fine without me, but I want to see if he needs anything. After all, I have read up on all the new research. My brain is a vault of scientific, stem cell, environmental, nutritional, therapeutic data, and at the core, I am a mom who is certain my heart can expand to the outer limits of the entire universe.
Which reminds me to remind my husband he needs to get a vasectomy because I have plans to adopt every child with a rare condition, and it’s already Wednesday and we haven’t had my weekly talk about either of our reproductive organs yet. Like that wayward womb of mine with a mind of its own that I talk to and talk about until we finally conclude that in me grew a perfect little human destined to change the face of humanity. Because his smile, the one he willingly gives to anyone he meets, the one that calms the chaos, the one offering up the anecdote for any brain waves of doubt, can assuredly save the world.