The invisible part of special-needs parenting is what makes it so tough

It’s really hard to parent through issues nobody can see, understand or wants to talk about.

Photo: iStockphoto

“What a life, huh?” a well-meaning stranger commented on my peacefully sleeping child in his car seat carrier.

I knew the correct answer was to smile and agree. To lament on what an easy existence my sweet baby was living. Eat-sleep-play repeat, right? Because that’s what the man saw. What he expected.

If I was honest, I would have said my little cutie pie’s life had been hell thus far. That my seemingly healthy nine-pound son had, in fact, almost died on his second day of life, had been in and out of surgery during his short time on the planet, and endured unimaginable pain.

That I was terrified of what his future would entail.

I would explain my fierce battle with the insurance company and hospital billing department, starting while my son was still in an Isolette on the top floor. While he was fighting for his life in the NICU, we got a bill in our mailbox for $80,000 one day and $11,000 the next, and that was just the first trickle. His claims were denied (but, thankfully, eventually covered) because he didn’t yet have an insurance card. Because he was a newborn.

To this naive onlooker, I could have recalled how my baby howled after being refused nourishment time and time again, as I or his medical team fed him tortuously through a dropper while he craved to suckle, though his tiny body couldn’t manage to eat or poop naturally, at least not yet.

I didn’t though.

Because nobody wants to hear about that when they remark on the “tough life” of a beautifully snoozing babe.

So I nodded meekly, barely mustering a smile, as if to agree with him. And then I made another of many hasty exits in my parenting journey.

the back of a mom sitting with 2 kids. I coped with my son’s special needs by throwing myself into my jobA similar feeling rushed over me at the new moms’ group when, from under his pale green onesie, my infant’s colostomy bag ballooned out and I needed to release the gas valve. Or how I avoided the gory details when telling my boss I needed to leave early because daycare was reporting my toddler’s bottom had gotten so raw and sore he couldn’t even sit down, and I didn’t know if I should call his pediatric GI nurse or take him to urgent care, but I knew I had to do something.

My son’s condition, Hirschsprung Disease, has a high ick factor. I could talk all day about bowel issues, and how we’ve managed them these last 10 years. But I’ll spare you. Instead, I simply won’t sign him up for an overnight camp with his brother again this year. And I’ll dodge your questions about why. I won’t come to your event if it’s on a night where we have to do a treatment, or I’m watching him closely after a medication change. I’ll have private meetings with his teachers in order to shield his classmates from the full extent of his invisible condition.

But it’s really tough to parent through issues nobody can see, that nobody really gets or wants to talk about.

When other moms casually mention their child’s breezy trip to honor roll each quarter or impressively high reading levels, I never say anything but feel a bit nauseous. My oldest child has learning differences, and while dyslexia is better known and understood than Hirschsprung Disease, it’s still hard to fully grasp—and easy to forget about—unless you’re living it.

A friend posted a Facebook photo of her kid’s straight-A report card, and I wanted to reply with a pic of my son’s C in English and how proud that made me because it meant he was holding his own in a grade-level course, having worked his butt off to advance past remedial work.

Of course, I didn’t. It would have embarrassed both my friend and my son.

So even our triumphs we don’t talk about, like how after a year of vision therapy my son could finally focus his eyes enough to advance his reading, which for the first time ever was approaching grade-level. Yes, I know some of his peers are reading at college level, and that’s awesome. At the same time, we’re treading water right here in a place no one talks about.

Yes, our struggles linger primarily outside the public view. But, at least intellectually, I know we’re not alone.

People all around us face myriad invisible challenges. Some are the diagnosable variety but others are not. Your child probably doesn’t suffer from dyslexia or a rare congenital bowel condition, but she might have trouble making friends. He might punch walls when he’s upset. Maybe she pulls her hair out. Or pukes when she’s nervous.

The hardest parenting moments aren’t the ones you post on Facebook. The hardest hours don’t involve Instagram photos or WhatsApp chats.

It’s checking on your newborn 20 times in a night because you’re so freaked out about SIDS that you’re eventually lying flat out on the scratchy, smelly carpet next to his crib, so you can rest your weary body in a spot where you can still hear his rhythmic inhale, exhale, inhale, exhale.

It’s the moments you’re silently bawling in a locked bathroom stall. The times you keep your expression stony so you don’t crumble. It’s when an offhand remark knocks you in the gut. Or when your own child tries to sugarcoat a situation to keep you from worrying or intervening on their behalf. It’s the moments you’ll never joke about, even in 50 years, or flippantly mention over coffee.

It’s the closed-door, emotional drain.

The utter helplessness of having this precious human looking to you for guidance, counting on you, even when you feel like you don’t know what you’re doing, all the while, willing yourself the strength to hold them up and bear the full weight of their struggles.

Those moments. That’s the hardest part about parenting.

Read more:
Connecting with parents online helped me survive parenting a son with special needs
How becoming a big sister gave my daughter with special needs a big confidence boost

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