Remembering to Be Grateful in the Pain

“Does he even know that it’s not normal?” my friend Trent asked.

He was referring to the fact that my son Jonah, once again, was getting to do some ridiculous, once-in-a-lifetime thing. This time it was attending the World Series.

An anonymous donor had contacted a fellow EB dad to ask if there was any child in his epidermolysis bullosa world that loved the Atlanta Braves baseball team and might want to go to the World Series. The dad immediately thought of Jonah and texted us. Three days later, Jonah was headed to Atlanta for game 4. Amazing. And ridiculous.

Jonah and his dad, Matt, enjoy game 4 of the 2021 World Series on Oct. 30 in Atlanta, thanks to an anonymous donor. The Atlanta Braves beat the Houston Astros that day, 3-2. (Photo courtesy of Patrice Williams)

Tonight, Jonah and I have been asked to give our testimony about his battle with epidermolysis bullosa at a prayer and worship service at our church. The topic we’ve been asked to speak about is “Gratitude in the Suffering.” So, I’ve been thinking a lot about gratitude in light of the absolute suck that is EB.

And the truth is that some days we aren’t grateful. At all. Sometimes we are pissed and sad and depressed. In those moments, I just want to scream about how unfair life is, and punch something when I think about other people with healthy kids and perfect lives. (OK, maybe I should leave the punching part out of our testimony.)

But other days, I’m able to focus on the incredible love we’ve felt, the amazing people we’ve met, and the ridiculous experiences we’ve had because of EB. Jonah received a Make-A-Wish trip to meet comedian Jay Leno and tour his garage. He was on national television on a show called “The Doctors.” He spent an amazing day at the racetrack and became good friends with NASCAR champion Joey Logano. He got to hang out with legendary racer Richard Petty. And he went to the World Series.

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Jonah hangs out with comedian and TV star Jay Leno during a 2017 Make-A-Wish trip. (Photo by Patrice Williams)

But really, those aren’t the things that make me feel so grateful. Don’t get me wrong, we are certainly grateful for those experiences. But it’s the million “little” things — which aren’t really little at all — that make me so thankful. It’s the million ways we’ve been cared for in the last 12 years. It’s the unselfishness and the love of friends and family. It’s the gift of perspective and the privilege of accepting help.

It’s a family member who gives us a significant amount of money each year to meet all of Jonah’s needs that aren’t covered by insurance, such as private school tuition and expensive monthly supplements. It’s the way my husband Matt’s mom, “Granny,” used to come from South Carolina and stay from Thursday to Monday, almost every week, for Jonah’s first couple years of life, to help me care for him.

It’s our church finishing our basement with bandage storage and a dressing change counter. It’s Jonah’s kindergarten teacher bringing over a cassette player and audio books one day when Jonah had a corneal abrasion and was in the dark. It’s another friend reading to him by flashlight that same night.

It’s the rotation of 10 people who would come, one a day every other week, to help hold him still and entertain him during dressing change when he was a baby. It’s a friend hiring a masseuse to come to my house and give me a massage when those infant days were so challenging and I hardly ever left the house.

It’s our church making Jonah his very own parking space with a personalized sign in the basement so he could drive his dune buggy to church. It’s the friends, family members, and complete strangers who showed up for seven years for a 5K we put on called Jogging for Jonah, and the more than $150,000 they raised for EB research. It’s the hundreds of blog comments showing concern for him. And the thousands of prayers that have gone up for him over the years.

It’s the way people still keep praying, 12 years in. They pray for him in general. And when I put the call out, they pray specifics. They root for him, “love” all the Facebook statuses I post about him, and genuinely want to know how he’s doing. And when he’s not doing great, they amp up the prayers and love and make sure to say, “And we’re praying for you, too, Momma.” And then they do.

So, yes, the once-in-a-lifetime opportunities are amazing. They are memories he’ll have forever. But what sustains us and helps us to walk in gratitude, even in the pain, is knowing that hundreds (thousands?) of people are in our corner. We have a ridiculously huge safety net of love and support. And we can be grateful that when we do fall, they will always catch us.

And knowing that we’ll never be allowed to fall too far, and will always have a safe place to land, is a pretty great reason to feel grateful, even in the suffering.

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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.