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“Are they going to saw open my skull?” asked my eight year old. “Cause that would be cool!”
While it sounds like a line from a Halloween horror show, this is real life in the Bowen household.
On this week’s agenda: Neurosurgery.
If you’ve followed my blog, you’ll know that a few weeks ago we got results from an MRI of my son’s brain.
Magnetic fields revealed the rare structural defect in his cerebellum that basically pushes brain tissue into the spinal column and blocks the flow of cerebro-spinal fluid.
Symptoms of this brain bug mirror autism’s myriad symptoms and behaviors. Bennett was diagnosed with Autism Spectrum Disorder at age 3. And between then and now, doctors have heaped on additional psychiatric pronouncements.
The fact that we’ve now unearthed this neural flaw, one we could potentially fix, that could possibly be contributing to my son’s metal health pickle, is absolutely thrilling.
But, brain surgery as the remedy? Not so fab.
So, what do we do, as parents, when life lobs these softballs our way?
In the past, I’ve retreated in avoidance.
You’ve seen me in the neighborhood, in my running shoes, pounding concrete. Gin works too.
However, a braver route is to consider the way our children face these challenges: with no fear, and full of confidence.
For a while I’ve vacillated between tattooing one of two things on my hands: “Stay calm.” Or, “No fear.” Today, I choose the latter.
I’ve watched my eight year old do life with an alarming amount of brio.
His absence of worry is terrifying to me as a mother. I hold his hand to cross the street because speeding cars do not stay him. I avoid puddles, pools, rivers, lakes and oceans because he’d plunge in despite the fact he’s not a good swimmer.
But for all my anxiety that stems from special-needs parenting, I can proclaim that this kid is my hero.
Thanks to him, I’ve grown this rhino-heart inside my chest that’s bourn much and can handle what’s next.
I think all us parents can.
So, if the prognosis is brain surgery, we got this.
The conversation unfolded like this:
Me: “Where does your son go to school?”
She says, “We had him for one semester at __________ School. But it was horrible,”
“Why so bad?” I asked.
She leaned in. She lowered her voice: “We didn’t know this before we enrolled, but there were, you know, AUTISTICS,” she said, cringing. “We pulled him out and went somewhere else.”
This Is Me: boiling in the middle of a business lunch.
A few precious seconds passed. I bit my tongue and changed the subject.
Now I’m kicking myself, and instead I’m cowardly penning this exchange.
Autistics, retards, homos, niggers, and anyone else who’s felt the sting of a small-minded, pejorative tongue, I apologize.
I missed the cue to move this narrative of loving our neighbor forward.
Haven’t we made incredible strides in humanity? Didn’t we abolish slavery? Give women the right to vote? Wed whomever you want?
WHY ARE WE STILL HAVING THIS CONVERSATION?
All day, the lyrics of this old civil rights tune has been running through my head:
If I could help somebody
As I pass along
If I can cheer somebody
With a word or song
If I can show somebody
How they're travelling wrong
My living shall not be in vain
I heard this song a few months ago for the first time at my grandfather’s funeral.
Ruskin Reddoch was a war hero with a Silver Star and Purple Heart. This World War II Marine Core vet taught civics and coached every sport imaginable in Tarpon Springs, Florida after returning from the Pacific theater.
When he died at age 100, an African American preacher by the name of Dr. Nate Crawford came forward to give his eulogy.
He said: “It was just after segregation ended in schools… Coach Reddoch was the first teacher who looked me in the eye like I was a human being who belonged there.”
Dr. Crawford went on to describe how my grandfather, whom he’d met at age 15, had had this incredible hand in making him feel human.
Later Dr. Crawford sang a soul-stirring rendition of “If I Could Help Somebody.” “It’s the song that reflects Coach’s legacy,” Crawford said.
To my son ("The Autistic”) and the rest, I promise to do better next time,
I’m going to make this simple and brief. What I have to say is worth it.
You don’t have to spend any money. You already have it. And it could change your child’s life.
Say hello to your gut.
I’m not talking about your great abs or your C-section scar or your indigestion.
According to Albert Einstein, it’s “the only thing of any value.”
Our husbands don’t have it. Our doctors don’t have it. Our mentors don’t have it.
I’m talking about this invisible cape we Moms don called mother’s intuition.
Instinct. Sixth sense. Still, small voice. Gut feeling.
I like to think of it as the superpower we’ve earned for all those sleepless nights, stretch marks and Legos we’ve stepped on.
Yes, we’re busy with PTA meetings, carpool and baseball games.
We’re commuting, emailing, ironing, breastfeeding.
Aren’t we all trying to carve out one impossible hour to escape for a pedicure?
But please move this to the top of your to-do lists, Moms.
First, turn down the static: You’re wrong. You worry too much. You’re being dramatic.
I heard that, too. But remember, no one else has the hunch.
Don’t shrug it off. Don’t second-guess.
Now do a gut check. Anything feel off with your child?
For the past year, I heard a whisper from deep in my belly. “Keep fighting for answers,” it said as we rode a roller coaster of examinations, medications and therapies with one of my three children.
A few days ago, I met with a neurologist who leaned in close and listened intently as I relayed my convictions. They weren’t logical or evidence-based, just deeply felt.
“I believe you,” she said. “Here’s what we do next.”
She called me yesterday and said, “Lizza, I have some test results concerning your son. Can we talk?”
Today, I’m armed with information that could change the quality of my child’s life in an extraordinary way.
Mamas, I share this story (and there’s more to come) to encourage you. For the sake of the child that you carried or adopted unselfishly, lost sleep over, prayed for unceasingly and continue to love more than yourself, tune in and listen.
I’m packing: pajamas, stuffed animals, sunscreen, books and bug spray.
Soon we’ll dodge the 100-degree Texas heat and embark on the Family Vacation.
Minus a family member.
This is shaping up to be one of those big years I’ve heard other moms of children on the autism spectrum talk about: “It doesn’t get easier. It just gets different,” they say.
My brilliant son, almost eight years old now, is like most autistic kids in that he needs routine and structure.
Summer is the antithesis.
Every year I see June coming like a wrecking ball.
Two years ago we tried the beach. Strolled the boardwalk to an Italian restaurant.
Noodles arrived at our table curly (not straight, like we eat at home).
Plates went flying.
My brother’s kids who were vacationing with us were crying. They quickly exited in search of snow cones. We spent the next hour trying to calm my son.
Ixnay On The Vacay for the next two summers. We didn’t give up. It was just too stressful to travel as a family.
Now here we are. With two curious little girls who’ve heard this RUMOR about summer: Stay up late catching fireflies? Popsicles? Meet Mickey Mouse?!?!
For the first time, my daughters are old enough to recognize that their summers haven’t quite fit that idyllic mold.
A few weeks ago, my in-laws graciously offered to host my son for a few weeks at their Tennessee farm. I knew he’d have a blast at Grandparent Camp: swimming, gardening, cooking, but within well-defined routines and fixed schedules.
My husband and I felt as if we’d been handed a golden ticket to SUMMER.
SUMMER, with our daughters untethered to early bedtime (when the meds make him crash), and therapy ride-a-longs, and meltdowns that require earplugs, and medication schedules, and hospital waiting rooms, and the same day after day we uphold because we love and adore our son, but know he requires more.
So (finally!) here’s to the dog days. And to our first almost-family vacation.
May my daughters know the joy of spontaneity and the wanderlust that breezes in when we split my son from the picture.