The Struggle of Heading Back to School

Heading back to school has always been a bit rough for my son Jonah, who lives with junctional epidermolysis bullosa (EB). Now that he is a middle schooler, things seem to become increasingly frustrating and difficult for him each year. This is partly due to his painful and abnormal life with EB, and partly the fact that it’s middle school. Because honestly, how many of us can say we actually enjoyed middle school?

Jonah is blessed that he has been in the same small school since kindergarten. Some students have come and gone, but for the most part, kids know him and know about his condition when he walks through the door. In that regard, it is a “safe” space for him. But he still struggles with his morning EB routine, the hectic schedule, the homework, the heat, and the athletic limitations.

Jonah on his first day of seventh grade. (Photo by Patrice Williams)

To get to school by 8:20 a.m., I have to set my alarm for 6:20 so I can shower before waking Jonah at 6:45. He has all the normal “getting ready” tasks, but then we spend up to 20 minutes doing wound care — draining blisters that have formed overnight, patching them, and replacing any dirty dressings. He then goes downstairs and has to be tube fed, which takes another 20 minutes. It’s a lot first thing in the morning.

We pack his tube food bag for lunch, including a pre-mixed tube feeding, syringe, feeding tube extension, Zinc supplement, and apple juice box. Once we meet his nurse at school — thank God for nurses! — she does a vitals check before he goes to class. The nurse tube feeds him lunch and does wound care as needed throughout the day. Outdoor recess requires a cooling neck gaiter and sometimes a neck fan, which he only begrudgingly wears.

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At the end of the day, he carries his way-too-heavy book bag out to the pickup line and comes home. Then, most days, it’s a 15-minute break, a 1.5-hour dressing change, an hour or more of homework, and then a dinner tube feeding. There is generally no time for any extracurricular activities.

Most days, he wakes up mad that most of his friends can get up at 7:45 and still make it on time.

Jonah, his brother, Gideon, and Patrice pause for a selfie on the boys’ first day of school. (Photo by Patrice Williams)

But we’re making it. We’re slowly getting back into a more rigid schedule, working to balance school and EB requirements with free time and fun. Thankfully, Jonah has at-home copies of a couple of his heaviest textbooks, and his teachers are flexible with his homework if there’s a night that’s especially rough. The students in his classes know and love him, and his teachers regularly cover him in prayer.

I often remind him what a privilege it is to even receive an education; in many places, it’s not a given. (I’m sure he’s really taking that to heart when I wake him up early to poke at him with suture scissors.)

He’s still helping out with his brother’s baseball team, and he helps out at school soccer games. He’d probably like to do more, but there literally aren’t enough hours in the day. Plus, he needs to make sure he has time to round out his day with a game of MLB: The Show.

It’s certainly not ideal, but I’m just so thankful that he is able to attend school regularly. He rarely gets sick, and mostly only misses if he gets a corneal abrasion. Of course, COVID-19 risk and constant mask-wearing add additional stressors, but he always finds a way to get through, mostly in good spirits.

And even if he acts like a big ol’ grumpy Gus with me every single morning, I know he’s thankful for school — for the classes, the teachers he loves, and the socialization with his friends.

I also know we’ll face new challenges in two years when he moves to a huge public high school. Will he be able to navigate the crowded breezeways with tons of kids? Will the school system pay for him to keep his nurse? Will he even agree to having a nurse? Does he need a therapy dog to help keep him safe? When and where will he get his tube feeding?

Whatever it takes, we’ll do it, because it’s his dream. He wants the crowds and the different groups of people, the array of classes, and the sporting events. He wants to help manage the baseball team. He wants the whole experience. So, just like everything else with EB, we’ll figure it out. And it will be good.

Find helpful school resources for those with EB here.

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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.