Toggling between having hope and going without it in life with EB

I used to pray every day that God would heal Jonah, my son. I don’t pray for that anymore.

It’s not that I don’t think God could do it. I’ve just come to believe that a snap-of-the-fingers miraculous healing won’t be how it happens for Jonah. I might be right about that, yet sometimes that sort of thinking causes me to forget hope. In the past many years, a part of me has decided that this life with epidermolysis bullosa (EB) is his forever.

Researchers are looking at many possible treatments, and I believe Jonah was born at a promising moment in history. But there’s no cure, and our only recourse in battling EB involves daily wound care, full-body baths, dressing changes every 48 hours using an array of over-the-counter creams, and medication to manage his pain. Beyond that, he receives good nutrition via a gastrostomy tube and supplements, such as iron and zinc. That’s it. What else can we do?

Every day feels the same. The feeling of “this is how it is” reigns, and it usually morphs into “this is how it’ll always be.” And although my hope is not lost, I find it wandering somewhere elusive and unknown, obviously taking the road less traveled. I keep wishing hope would wind its way back to him — to me — finding us eager, waiting, and always believing. I want to hope so badly.

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Our next step

Jonah will soon start a clinical trial for dupilumab, a medication that will, should, will hopefully, might, could possibly help control his itch. Even as I type that last sentence, I struggle with the words. Many sound too confident, too promising, and my heart isn’t ready for that hope. What if it doesn’t work? What if everything stays the same? Do I get my hopes up for him, just to be dashed by the possibility of “I knew it!”?

Better just to accept what is than hope for what might not be? I don’t know.

I’ve been watching the Paris Olympics daily, like much of the world. I’m less mesmerized by the medal counts than I am the amazing stories of overcoming adversity. There’s Suni Lee, overcoming two debilitating kidney diseases and trouble bending her legs to make her way back to Olympic glory. There’s Simone Biles, quitting at the top of her game to fight for her mental health, only to return better than ever. There’s Céline Dion, giving a once-in-a-lifetime performance in the opening ceremony while battling stiff person syndrome — a disease that, at times, makes it hard to even breathe. There’s story after story of overcoming adversity and rediscovering hope.

I’ve begun to think that God’s intervention likely won’t come in the form of an immediate cure, but instead through the divine spirit to fight and hope that God created in each of us. Maybe this medication won’t help Jonah. But what if it does? What if it helps him improve so he suffers less, even if just a bit less? What if there’s less pain, less suffering, fewer bandages, and more hope?

Triumph for Jonah won’t look like a world record performance under bright lights. It won’t look like Olympic gold. There’s a possibility it might never even look like a full cure. Maybe for him — for us — it’ll look like medical trials, new medications, the divine resilience of the human spirit, and the promise that with each medical advance, there’s a new reason to hope.

So as we embark on this new adventure, despite my best efforts not to, I’m beginning to hope. Here at home, during Jonah’s long days of limited treatments and chronic pain, folks all over the world are working and fighting on our behalf. Better treatments are being developed every day. This opportunity may be the first step to a much better quality of life. It’s very possible it could improve his fragile body.

But even more importantly, maybe it will help cure our spirits, giving us both a reason to continue holding our heads up to fight another day. A reason to hope.

Maybe, just maybe, better days are yet to come.

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.