As Parents, How Can We Let Our Medically-Challenged Kids Take Risks?

As Parents, How Can We Let Our Medically-Challenged Kids Take Risks?

It looks like we’ll never know exactly how Leif hit his head this week…

It looks like we’ll never know exactly how Leif hit his head this week. We were mountain biking and suddenly there he was, sitting confused on the side of the trail. No one saw him fall and he doesn’t remember what happened, but judging from the dirt and blood on his legs, and from the scuffs on his shirt and helmet, it seems like he probably tumbled and hit his head on the ground or on a tree. Luckily, we were done with the difficult part of the trail and after sitting for a few minutes, Leif was able to coast very carefully down a flat dirt road. Now it’s three days later and along with what seem to be very painful headaches, he still feels a little dizzy. We have good healthcare and are taking all the proper actions to help Leif heal from a nasty concussion. And the fact is that active kids get hurt. I know that. (Though I wish it would stay at the level of bumps, bruises, and scrapes…) But whenever Leif gets hurt and especially if the injury includes a bump on the head, I find myself transported right back to the time of his diagnosis and surgery for Chiari malformation, a brain condition that results in skull pressure and, if not treated, to a range of painful and scary symptoms.

Leif at his recent, socially-distanced 8th grade graduation!

I know that with a successful surgery, that time in our lives should be behind us, but as the parent of a child with a significant medical diagnosis, is that time EVER really behind us? Will Leif ever be able to break a leg or hit his head or twist his ankle without my emotions drawing a straight line back to his condition? The anxiety I feel this week is exhausting — so exhausting that every instinct in my body and my heart is to forbid Leif from mountain biking…but then where would these restrictions end? Would I ask him to give up rock climbing? If I can’t allow Leif to take reasonable risks due to my own anxieties, how can I help him live his life as a confident and decisive person?

It’s just so hard.

In addition to being a parent, I am also a psychologist, so I can’t help but look at my own emotions and anxieties through the lens of my profession. If I were my own patient, I would recommend exploring this issue from two directions: First, working to smooth the symptoms of my anxiety; and second, to dig deeper into the traumatic experiences that create these anxieties in the first place.

For me, when my trauma is re-triggered — be it directly through an injury like Leif’s bike crash, or even indirectly through things like hearing disturbing medical news on NPR — I feel anxiety in my body. It’s very somatic, including an underlying baseline of muscle tension and even activation of my asthma. What this means is that I can work to decrease these symptoms by working with my body. It’s not easy! When my anxiety is triggered, all I want to do is binge-watch bad TV with a bag of Ruffles potato chips dipped in sour cream while snuggling my dogs. But what I NEED to do is exercise. I need to get outside, go for a walk or a bike ride, focus on feeling my body in the moment rather than letting my body experience the past. Through consistently managing my symptoms by using exercise to force my body into the moment, I can force anxiety back into its cave.

But if ALL I do is manage my symptoms, I know that trauma and anxiety still exist in this cave, just waiting for their next opportunity to escape.

So if I were my own patient, I would also recommend going back into my time of trauma to release it from its cave so that eventually it can dissipate. This is the hard part. I don’t want to look back on Leif’s diagnosis, his medical terror, and the trauma of multiple brain surgeries. I would rather leave these memories buried. But the problem is they don’t STAY buried. My anxiety stems from the fact that these memories are only ever partially buried at best. So I need to dig them up, talk about them, write about them, experience the grief and other emotions that I was too busy and overwhelmed to feel at the time.

I know I need to use exercise to manage my symptoms. I know I need to re-experience my trauma to release it. And every fiber of my body screams to do the opposite — to disengage and to repress. Maybe if it were just me, that’s exactly what I would do. But I also see how my trauma effects Leif. My anxiety is unfair to him. If I let trauma have its way, my anxiety will limit Leif.

So we’re going for a bike ride this afternoon. Not on mountain bike trails yet, but just a short jaunt around our neighborhood bike paths. And through this writing and also through my own therapy experience, I am committing to working with the source of my trauma. I owe it to Leif and to myself.