A new driver that we once weren’t sure to expect
My son with EB prepares to take his road test, spurring my reflections
It’s Sunday as I’m writing this. I have a long to-do list today that includes grad school work, laundry, this column, and making sure my son knows how to back up without his rear camera and complete a three-point turn.
Jonah, who was born with junctional epidermolysis bullosa (EB) and wasn’t supposed to make it to his first birthday, is going to test for his driver’s license tomorrow. He hopes that by the time you read this, he’ll be an on-his-own driver with all the glorious teenage freedom that entails.
As in every new thing we take on, EB may present a few problems we’ll have to troubleshoot. We already know we have to figure out how he can open his gas cap without hurting his hands. Jonah can’t apply the strength and pressure necessary for gripping with two fingers without causing pain or blistering. Even with the inevitable creative problem-solving sure to come, I’m incredibly happy for him.
I’m also incredibly happy for me. I’m happy that he can go to the grocery store or pharmacy for me, pick up his little brother, and drive himself where he wants to go (especially on Friday nights when I am all done).
My son’s journey — and mine
Jonah Williams driving with his mom, Patrice, but hopefully not for long. (Photo by Patrice Williams)
Jonah turned 16 on Feb. 27. I can tell he’s getting older because this year is the first he hasn’t wanted a party. I know this is normal, too, but it made me tear up a bit. Isn’t it funny how often you don’t know that the last time you get to do something is the last time?
He may want to hang with friends on upcoming birthdays or go with someone to a sporting event, but are my days of his friends sitting around the dining room table singing “Happy Birthday” and screaming “eat more chicken!” over?
He’s just as tall as I am now. He talks about complicated sports things with his dad that I don’t understand. If he lets me help him with his math homework, I have to watch a video on how to do it. And last month, he received his first promotional postcard from a college.
I’ve written a version of this column once or twice a month for close to five years. In those years, I’ve covered almost every aspect — or at least the ones we handle — of EB. I’ve written about wound care, tube feeding, nursing care, the struggle for bandage coverage, a clinical trial, and everything in between. I’ve talked a lot about practical things, but mostly these days I’m feeling wistful and nostalgic. My baby is growing up.
The overall purpose of this column, like every Bionews column, is to increase awareness of a rare disease and to share experiences. And my personal hope for “Fragile but Fierce,” as found in my bio, is to “give hope to those living with epidermolsysis bullosa and light to those who love them.” One of these days Jonah is likely going to ask me to stop sharing his life on the internet. Or maybe he will just take over the column himself.
Until that day, I’ll continue sharing our experience and my heart here. It’s an outlet for me in a world that, for all of us, can feel lonely. Sometimes, it’ll be funny and have a flow this amateur writer can feel proud of.
And some days, like today, it’ll read in circles, saying nothing and everything all at the same time. I hope, even when you’re having to bear with my wistfulness and roundabout writing, it’s still giving you hope and light if you’re someone fighting EB or a loved one who supports them.
Whether you’re reading my practical, well-written tips or commiserating with me over a teenager too quickly grown, I hope my words help you feel just a bit less alone. Almost five years later, I’m still so grateful to be here.
Note: Epidermolysis Bullosa News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Epidermolysis Bullosa News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to epidermolysis bullosa.
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