When Your Child Has a Chronic Illness, It Changes Everything
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Photo by Jannes Glas on Unsplash
When you’re a parent, you eventually find some sort of rhythm. It doesn’t happen overnight. In fact, it probably takes years for almost everyone. The addition of another child at any point along the road typically requires a reset. Even if you had found your groove, a new baby will almost certainly require you to find the exit ramp and take a bathroom break. Of course, your non-baby child will probably need to pee in the grass at this point because making it to a real bathroom is just too much trouble.
But, after all the children have arrived and they’ve grown up a little bit, maybe enough to start preschool or elementary school, there is a chance the road will start to feel a little smoother, like a freshly paved interstate.
It may feel that way, at least, until something goes wrong with one of your children.
We’ve all been living in a pandemic for two years now, so perhaps achieving any type of rhythm remains impossible, but it’s beyond impossible when chronic illness crops up in your family. Sadly, more and more families will likely have to navigate the twisting, pothole-filled roads of chronic illness as the long-term effects of Covid-19 in children and adults continue to become apparent.
My oldest son who is ten years old has been struggling with a laundry list of unexplained ailments for more than a year. Recurring and debilitating stomach aches, headaches, fatigue, fevers, and more. We don’t know if it’s Covid-linked, though it’s certainly tempting to suspect that it could be.
Regardless of the origin, the illness has completely transformed his life and ours. From going to school to playing video games with his friends while on a video call, everything is more difficult for him now. After-school activities are out because the school day zaps too much of his limited energy. Homework is hard to keep up with because he often needs to nap in the evenings. Even when he’s doing things he loves like creating a shrine to Potato Dog (don’t ask…but if you must, check here), he has to stop to slump over in his chair or rest his head on the table for a moment. His class is going on a field trip soon, but he can’t go because it’s too far away and we don’t know how he’ll feel day to day or hour to hour.
His school and teachers have been relatively understanding of his absences and struggles, but frankly, it is hard for anyone to understand. I don’t totally understand it and I sit beside him most afternoons serving as his anchor. His emotional support parent.
Chronic illness can be infuriatingly subtle, unpredictable, and impossible for anyone else to see. We are now closing in on some answers (hopefully) after many months of hardship, but a lot of uncertainty remains.
Returning to the driving analogy, when chronic illness creeps up on a member of your family, it’s not like getting a flat tire — that would be too easy. You’d know exactly what to do. Well, at least I would because I’m a whiz at tire changing. Once everything was fixed up, you’d be back on the road with a little grease on your hands but not a care in the world. But unfortunately, chronic illness is more like a flickering check engine light. It blinks on for a while and you try to ignore it until smoke starts to billow from under the hood or there’s a weird metallic grinding sound when you press the gas. Then you finally take your car to the mechanic because you just can’t let this go on any longer, and when you pull in, the car seems to be working fine somehow and the mechanic stares at you like, “Looks good to me. Have you tried drinking more water?”
One night recently when I was preparing dinner while my two younger kids were playing Roblox on their tablets and my oldest was napping on the couch, I turned on my comfort song: “Redundant” by Green Day. Weirdly, it is my comfort song even though I associate it with driving my dad to radiation treatments when he had prostate cancer (which he recovered from) many years ago.
We’re living in a repetition…
The song starts before launching into a simple, soothing melody.
Now the routine’s turning to contention…Like a production line going over and over and over, roller coaster.
I listened to that song and that album over and over and over about 17 years ago when both my parents were sick with cancer and my life was really weird. Now, almost two decades later, I flipped on “Redundant” while chopping onions, and instead of letting my phone shuffle to new songs, I set it to repeat. I must’ve listened to it eight times in a row or maybe more.
Life with young kids can be repetitive for sure, but life with young kids when one of them has a chronic illness? That takes repetition to a whole new level. And I’ve become a pro at doing plenty of redundant things like listing symptoms for doctors and listening to them explain the same lab results over and over and over.
I have what seems like a lifetime of experience looking up symptoms and medical procedures on the internet, so I’m well prepared for this lifestyle. However, with some more tests for my son coming up in the next few weeks, I’m crossing my fingers we can turn the wheel back towards normal soon after that. Or at least back towards pandemic normal, whatever that is.
Because chronic illness is bad enough for adults, but when it’s your 10-year-old child you can’t find a fix for, it’s easy to feel like a failure. I’m so ready to merge back onto the highway, hit cruise control for even just a few minutes, and enjoy the carefree laughter and chatter coming from the backseat again as we speed toward a new adventure. It’s been too long.
Maybe I’ll even sneak on “Redundant” if I get a turn controlling the song selection (yeah, right). Because as the song’s chorus reminds us…
I love you’s not enough…
Even if I wish it were
Andrew is a writer of essays and humor and an editor of Frazzled, a parenting humor publication on Medium. You can subscribe to his email list for updates and follow him on Twitter for terrible tweets and more Green Day content, definitely.