Witnessing God’s Goodness in the Suffering

Our son Jonah’s last day of sixth grade was last week. Like every kid, he brought home loads of papers, folders, and notebooks. And like every kid, he left the contents piled on the dining room table waiting for it to magically clean itself up. After three days, I couldn’t take it anymore and went through it all myself. 

In deciding what to keep and what to trash, I came across his daily journal from his English Language Arts class. Each morning, his teacher would give them a question of the day that they were to respond to in the first few minutes of class. 

About halfway through the notebook, I saw: 

“What’s a question you’ve always wondered about but never asked?” 

And then his answer just below. 

“I’ve wondered, since God created everything, and God is all good, then why did he create EB [epidermolysis bullosa] and give it to me?”

It broke my heart. I’ve written before about wrestling with the “Why.” And of course, we’ve struggled on and off with this question since Jonah was born with EB in 2009. But having it written there on paper and knowing it’s something that my 12-year-old is struggling to process just made it hit in a different way. I mean, goodness, middle school is hard enough without having to wrestle with questions like this. 

I have no great answers for him. Maybe that’s the hardest part. I strongly believe that EB was not created by God and that God did not “give” it to him. I believe that EB is the result of living in a broken and sinful world, where things go wrong, where the laws of nature get screwed up. Just as I don’t believe God created cancer or COVID-19 or any other disease. Pain, disease, suffering, and death were not part of the original plan.

But still, there is no denying that a God who loves Jonah more than anyone ever will did allow him to have an extremely painful, often debilitating disease. He is struggling with it at 12. I’m struggling with it at 39. I don’t anticipate we’ll have any satisfactory answer this side of heaven. And some days, that is maddening.

But I try to remind him, and myself, that EB has brought good things into our lives as well. We’ve learned what’s really important in life. We have a better appreciation of things that really matter and things that don’t. We’ve seen the goodness of humanity in a way we wouldn’t have otherwise. We’ve felt God’s peace and comfort in a much more intimate way than we ever had before.

And we’ve had some really once-in-a-lifetime celebrity experiences with comedian Jay Leno, NASCAR great Joey Logano, and baseball player Kris Medlen that we wouldn’t have had otherwise. Even having Gideon, our youngest son who came to us through adoption, is the result of learning our genetic chances of having another child with EB. And of course, we wouldn’t trade him for anything in the whole world.

From left, Gideon, 8, and Jonah, 12, on their last day of school. (Photo by Patrice Williams)

Not that these things make it all OK, but they certainly give us something joyful to focus on and shift our perspective. And so, this is what I tell him: that in a really crummy, awful, painful set of circumstances, even in the doubt and the uncertainty, we see God’s gifts and glimpses of joy, and we know that these are the results of his goodness, his nature. That even when cells and genes and biology go wrong, God is still there in the comforting, the kindness, the love, and the lavish treats. 

Jonah and Gideon hang out with their friend, NASCAR champion Joey Logano. (Photo by Patrice Williams)

Some days it’s easy to believe it with every part of us. Other days, we believe it only with our heads, waiting for our hearts to catch up.

But one thing I know with absolute certainty: God has a beautiful plan for Jonah’s life, and for now, it includes living with EB. Already, I have seen how God has used him to minister to people, to show them what courage, hope, and a fighting spirit look like. He leaves everyone that gets the chance to know him changed for the better. 

When I doubt, seeing Jonah bring encouragement, joy, light, and hope to others is the only proof of God’s goodness I need. His life and the way he chooses to live are gifts to us all.

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Note: Epidermolysis Bullosa Today 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 Today or its parent company, BioNews, and are intended to spark discussion about issues pertaining to epidermolysis bullosa.