Preparing for the future wasn’t high on my priority list — until now

Jonah got his first promotional card from a college last week. We were told that my son, who’s now almost 16, very likely wouldn’t make it to his first birthday, because he was born with epidermolysis bullosa (EB). Now he’s just received an invitation to check out a college.

It’s a college we’ve never heard of, and he has zero desire to go there, but still. He’s made it to the age where we have to start thinking about college. I am not ready!

No, I don’t mean that in some sappy, my-baby’s-growing-up sort of way. I literally mean that I’m not ready. I don’t even know how to begin preparing him for the possibility of living on his own.

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The first college advertisement that Jonah has ever received came in the mail last week. (Photo by Patrice Williams).

I’ve never been very forward thinking when it comes to Jonah’s future. When he was a baby, I was so terrified there wouldn’t be a future that I refused to think about it. I was afraid that if I concentrated on the “what-ifs,” the negative ones would terrify me and the positive ones would give me false hope. I protected myself from his might-not-happen future by avoiding thinking about it at all.

We’ve mostly handled our EB circumstances one day at a time throughout his life, which has served us well. I have too much anxiety around the day-to-day things — my dogs barking too much, my boss sending me an email saying, “Let’s talk about this on Monday,” calling to make a routine appointment, panic ordering in a restaurant, getting a phone call instead of a text (you know, normal anxiety-inducing things) — to worry about the real things.

(Funny meme alert: I saw one the other day that said, “Crazy that my body can’t tell the difference between answering a text and being chased in the woods,” and I immediately sent it to my two sisters in a group text because we are the same. And by same I mean anxious.)

I’ve taken really good care of Jonah throughout his 15 years. But in some ways, I feel like I haven’t been intentional enough — especially as he’s gotten older — to make sure he’s as independent as he can be. I know that he’ll always need help with things and that life for him will look different from his peers. But I’ve never really imagined him living on a college campus, and now, as the possibility approaches, I feel like I’m 10 years behind.

I haven’t taught him how to do his wound care or tube-feed himself. He won’t eat smoothies or protein shakes, so his high-calorie alternatives are limited. He doesn’t know how to do laundry, and it often hurts his hands to do even little things like feed the dogs or make his bed. He’s relied on us or his nurses for so long, his motivation and knowledge about doing things for himself are both very limited.

It’s tough as a special needs mom to know when “taking care” becomes enabling or a crutch that hinders. I feel like he needs a crash course in all the things. (He will be really excited about this, let me tell you.)

I know it’ll be OK, and we have time. I’ll figure out a way for him to do his own wound care and get the calories he needs, discover what living options are available for him on campus, and have clean clothes. But the thought of figuring all that out overwhelms me. And the thought of him being gone in two years overwhelms me even more. My wasn’t-supposed-to-make-it baby is making it.

And it’s probably about time to start thinking about his future. He’s fought for it, and he deserves it.

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.