I need a break from the constant demands of epidermolysis bullosa

I get so tired of thinking about epidermolysis bullosa (EB). Even as I sit down to write this column, I’m wondering, “What’s left to say?”

My son Jonah was born with the condition, and we’ve spent 14 years dealing with it. There’s still no real treatment, and definitely no cure. EB affects every part of our lives, and it sucks. I imagine it’s going to suck forever.

It’s always something with this disease, and sometimes that really pisses me off.

For instance, Jonah needed a haircut last week. His haircuts have to be coordinated with a bath and bandage change so all the little hairs don’t get stuck on his skin. I texted his grandmother, who watches him while I work, to ask that she schedule his appointment for one of his dressing change days. Then I texted his nurse to let her know the plan and that he’d need a bandage change right after his appointment.

In addition, Jonah was scared about the haircut because he had a bad wound behind his ear that was sticking to the ear. So I texted him, “Make sure you put Aquaphor on it and get it unstuck before you go. It won’t matter if your hair’s greasy since the stylist is cutting it off. But you don’t want the wound to still be stuck when she starts.”

There was so much I had to consider for a simple haircut.

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Then, last weekend, our boys had a baseball game. I was working, so my husband, Matt, got them ready and took them by himself. I was swamped with work and stressed about meeting a deadline, but I was also texting Matt, “Is Jonah going? OK, make sure to take his cooling towel, his fan, and extra batteries for the fan.” Unfortunately, he didn’t get the text, so they didn’t have the items. Once I could finally get there, Jonah and I had to leave early because it was too hot for him.

Jonah is currently preparing for a lake trip with a group of friends. He can’t put on his own sunscreen or wear a life jacket due to EB, and if he gets wet, his spongy bandages will soak up all the water. Being unable to dry off will make it very difficult for him to enter and eat in the restaurant they’ve chosen for the drive home.

I’m working to get in touch with the mom in charge before they go. I also plan on getting up super early that morning before work to remove the spongy parts of his bandages and wrap him only in his roll gauze and sleeve layer so he won’t soak up so much water. I bought him spray sunscreen so it doesn’t have to be wiped on, but I’m worried the spray stuff will sting his open wounds. I recommended he leave his swim shirt on instead, but he wants to be like all the other kids. I fear he’ll get fried by the sun. He’ll then need a bath and bandage change when he gets home, which means starting the process at about 9 p.m. on a work night.

I hate EB.

Jonah got an invitation this week to an end-of-summer dinner and pool party that will take place in mid-August. The swimming pool is reserved for 8-10 p.m., which means he’ll get home around 10:30. That is when we’ll be able to start his bath and bandage change. I’m really looking forward to that midnight bedtime. Why can’t he be able to towel off and go to bed like every other kid?

It never ends

Every day I come home from work and am bombarded with inner thoughts or outward questions from his nurse or grandmother.

“Patrice, we just called in this refill.”

“Patrice, you need to pick up this prescription at the pharmacy.”

“Patrice, we are out of this supply. Can you reorder?”

“Patrice, Jonah didn’t eat or drink today. When’s the last time you talked to the doctor about [fill-in-the-blank]?”

“Patrice, when Jonah goes to high school next year, we’ll need to …”

I am so tired. And then I feel guilty about feeling tired, because anything I feel is only a fraction of what my son has to deal with. So then I feel tired and guilty.

I just wish things were different. We need a break.

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.