With my son taking the lead on his EB care, I feel hopeful for his future
Jonah is becoming more independent as he prepares to fly the nest
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A couple of weeks ago, our whole family was supposed to head to Florida, partly for a baseball tournament and partly for vacation. The trip came right on the heels of our beloved Cousin Camp (this year went much better than last, in case you were wondering), and my son Jonah was already over being away from home.
Jonah is a great kid, especially considering all that epidermolysis bullosa (EB) demands of him each day. Many days, he is quite jolly (his word, not mine). But he likes to be at home, playing video games in his own chair, dealing with EB in his own bandage room, and sleeping in his own bed. Each time the topic of Florida came up, he was quite unjolly. To be fair, the idea of another week away from home helping care for him wasn’t making me feel the jolliest either, but that is the reality of vacationing with EB.
It was maybe our third day on the beach at Cousin Camp, and I had just gotten to sit down (after hours of bandaging, wound treating, sunscreening, tube feeding, and hauling everything to the beach) when he hovered — yes, there was hovering — over my chair and said, “Hear me out: I don’t want to go to Florida.” I snapped at him to please leave me alone and I just sat down and are you kidding me and you are definitely going to Florida because who is going to take care of you and why would you bring this up now when I am finally getting to relax? before storming off to take a walk by myself.
Because I am a level-headed, emotionally balanced adult.
Letting Jonah take charge
Eventually, we had a real conversation about it, and I told him that if he did all the work of arranging his nursing care with his agency, which I had informed months ago that we wouldn’t need nurses because we’d be out of town, and talking to his grandparents to see if they were willing to be around for him that week, he could stay home.
Jonah is living his best life — not in Florida — watching baseball with his dog, Muggsy. (Photo by Jonah Williams)
And he did. My child, who has depended on me for almost 18 years, stayed home, and although he was mostly not alone, he took charge of his care. He arranged his nurses, set his dressing change schedule accordingly, did all of his wound care and bandaging except for the parts he couldn’t reach, made sure he got the tube feeds and pain medications he needed, and survived without me!
And it was so, so good for both of us. He gets tired of being lovingly cared for (bossed and nagged) by me, and I have moments of extreme burnout from caregiving. (My therapist says this is completely normal and to stop beating myself up about it. She also says every adult feels annoyed by their teenagers.)
He was OK, and much happier than he would have been at the ball field, in 100-plus F heat, getting delayed for five hours by lightning. And I was happy to jump in a swimming pool after the aforementioned hellishly hot ballgames and not have to worry about limiting my time there because of a requisite after-swimming dressing change. Gideon, our other son, even taught me how to dive, or at least to belly flop at a better angle.
It was one week, and it still involved nurse assistance and grandparents. But it gives me so much hope that he can live his dream of being a residential college student, and that both of us can and will fly the EB-constructed, codependent nest.
And so much hope that we have plenty of jolly ahead for both of us.
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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