What I’ve learned from all the resilient kids fighting health battles
Despite the challenges they face, they keep up the struggle to live their lives
“Mom,” my son Jonah, who has epidermolysis bullosa (EB), texted me a couple of weeks ago. “I just accidentally poked myself in the eye.”
He’d just completed one of four straight days of standardized testing at school. Normally, it doesn’t matter if someone pokes themselves in the eye. And normally, it’s not something they’d text their mom about. But for Jonah, it usually means a corneal abrasion.
The next morning, I got another text from his bedroom while I was drying my hair. “Eye bad. Can’t go to school.” This text was followed by two days of intense pain and low light. It meant missed school and missed mandatory testing. So not only did he swap school for two days of intense pain, but the following week he had to be pulled out of class to make up the testing, putting him further behind in his classes.
About a week later, I received another text while at work. This one was accompanied by a picture of a raw and bloody spot on his shoulder. “I took my book bag off,” he texted. “That’s it.” His book bag sliding off his shoulder had rubbed his skin raw.
Last Saturday, at his brother’s baseball game, he came limping out of the dugout. “Mom, can you come help me?” One of the kids had accidentally stepped on his toe. We trudged all the way across the complex and up the hill to the car to find a huge blister on the top of his big toe. I drained it and patched it up, but he couldn’t return to the game for a long time. He had to stay in the car and rest because he couldn’t stand to have his shoe back on.
It’s like this all the time with EB. No day is unaffected, and Jonah is always battling something. Always. As I write this, it’s ankle blisters and mouth wounds, which prevent him from eating. But the thing I love about him, and about all the kiddos I’ve known who are fighting battles, is his amazing resiliency. He has his wounds, his pain, his moments of missing out. But then he bounces back.
Some might say he has no choice. But I know it’s a choice he fights to make every day. To be resilient. To fight back. To have hope.
One day last week, the eighth graders were making a promo video for the rest of the school about Field Day. It meant they had to go outside (coincidentally in the rain) to play some field games and pie some teachers in the face. Sounds pretty amazing. And it was. But it came at a cost for Jonah.
He had to come home and endure over an hour of bandage changes because he was wet. And it wasn’t even a dressing change day. He knew that choosing fun would have consequences, but he chose it anyway. He chose to live.
Jonah (in the white shirt and skirt on the left, in the foreground in the middle, and shoving the pie in the third shot) and his friends help out with a Field Day promo video last week at school. (Courtesy of Patrice Williams)
These kids. Do you know them?
I think of our friend who is Jonah’s age and has fought back from a brain tumor and the paralysis of one whole side of her body. Or another friend who goes to my boys’ school and is now in remission from leukemia.
There’s even the ones who didn’t win their earthly battle. I think of my friend’s sweet baby Izzy, who taught us countless lessons in her short eight months, and did it with such strength and grace. We remember her when we see honeybees. We hear her in the lyrics of “My Girl.” We feel her in a breathtaking sunset.
And there’s our sweet EB friend Anton. He passed away several years ago, but changed our lives forever and for the better. He smiled and laughed and told the silliest stories. He brought together strangers, inspired an NFL football team, and kept us all laughing. He whispered his love for me just a few days before he died. I think about him all the time, but especially when I read “Pete the Cat” books.
These kids. They’re faced with the hardest and most unfair circumstances. They’re asked to endure the unimaginable. They’re made to fight, whether they want to or not.
And all of the ones I’ve been honored to know, literally every single one, are the most amazing humans I’ve ever met. They battle to have hope. They fight to be whole. They take us to school every day, showing everyone around them what it means to keep going. Some days they’re just getting by. Some days they’re thriving. But for sure they’re kicking butt and taking names every single day. They certainly don’t deserve what they’re going through. And we certainly don’t deserve them.
Jonah and Patrice at a recent minor league baseball game. (Photo by Patrice Williams)
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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