It’s shortly after we’ve returned home from the hospital. Tess is still at home, not back to school yet. I go to the end of our driveway, and discover that in our mailbox is a homemade card from one of her classmates, who lives about a mile away.
The front of the card has a band-aid on it, and her friend has drawn arms and legs on it, creating this delightful smiling band-aid person, with GET WELL SOON in massive letters. Inside, he’s written that he has missed having her at school.
I am totally undone by this card. The sweetness of it. The gesture of traveling to our house and putting it in our mailbox. Of letting Tess and our family know that yes, someone at school has noticed that she hasn’t been there, and he’s missing her.
To my great surprise, I burst into tears. It’s the only time I’ve cried since we almost lost our girl as 2025 changed into a new year. I am irrationally connected to this card. I look at it over and over. I open it up and read the message about him missing her. I keep it close by in the days that follow. I have it still, in fact.
Back to the Slopes
Meanwhile, this time of year, Tess hits the slopes. If you’ve been following along, you know about her wild streak of independence in the past few years as she’s been learning to ski. There was this thing called a slider, a big metal frame that she’d lean over and get strapped to. A couple of years back, she abruptly pushed it over. Down into the snow. Essentially telling us: I’m done with this thing. Let’s just ski.
So she’d been wearing her own skis, with them attached in the front so they don’t splay apart, and someone behind her pulling on a tether in a V shape attached to her hips for steering and stopping.
But this year, after the seizure, she hasn’t had the leg strength for that. We tried to get her going, but she kept falling over before we could even start. Even when we reinstated the slider, she couldn’t stand up. So we got her into a sit-ski. It’s designed for people who don’t have mobility in their lower body. She sits in what looks like a big comfy gaming chair, and her volunteer pushes her from behind. She still gets to go out, do runs, get the wind in her face. She just doesn’t have to push or steer. Just ride.
What Resilience Looks Like
It might sound like I’m frustrated about the sit-ski. But I’m cool with it. She’s been through a lot. Her body went through a lot. I’m just pleased that she still wants to go out, get in the snow, do any kind of skiing.
If you spend time with Tess and watch her, and see all the things she’s able to do, you can’t help but be amazed. She possesses this wonderful strength. A classmate sees it, which is why he made that card. Her ski volunteers see it, which is why they show up every week. And her family sees it every single day.
Tess has Hao-Fountain syndrome, a rare genetic condition caused by a mutation in the USP7 gene. You can learn more about the condition and the families working toward a cure at the Foundation for Hao-Fountain Syndrome (usp7.org), or by listening to the Stronger Every Day podcast.