When your child has a chronic illness, it changes everything

When you’re a parent, you eventually find some sort of rhythm. It doesn’t happen overnight. In fact, it probably takes years. 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 nonbaby 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 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.

My oldest son began to struggle with a laundry list of unexplained ailments when he was nine years old. Recurring and debilitating stomach aches, headaches, fatigue, fevers, and more.

His illness completely transformed his life and ours. From going to school to playing video games with his friends while on a video call, everything became more difficult. After-school activities were out because the school day zapped too much of his limited energy. Homework was hard to keep up with because he often needed to nap in the evenings. Even when he was doing things he loved like creating a shrine to Potato Dog (don’t ask… but if you must, check here), he had to stop to slump over in his chair or rest his head on the table for a moment. When his class went on a field trip, he couldn't go because it was too far away and we didn't know how he would feel day to day or hour to hour.

His school and teachers were relatively understanding of his absences and struggles, but frankly, it was hard for anyone to understand. I didn't totally understand it even while sitting 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. Eventually, after many doctor appointments, tests, and dead ends, we finally found our answer: Crohn's disease.

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 before my son was diagnosed, 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. 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. 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. And with a diagnosis finally in hand, I'm hopeful we can turn the wheel back towards normal. Whatever that might be for us now.

Because chronic illness is bad enough for adults, but when it’s your 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.