How Baseball Has Given Us Moments of Joy — a Precious Commodity

The pain and trauma of epidermolysis bullosa make joyous moments priceless

Patrice Williams avatar

by Patrice Williams |

Share this article:

Share article via email
Main graphic for column titled

My cellphone rang at work last Thursday at 1:21 p.m. It was a call from my son Jonah’s phone. While he was at school. Where he’s not allowed to use his phone. I knew that what awaited me when I answered wouldn’t be good.

It wasn’t.

“Mom,” said a panicked, tear-filled voice on the other end, “you need to come get me right now.”

“OK, I’m coming,” I immediately responded. “What’s wrong?”

“It happened again,” his voice trembled. “I fell. I took all the skin off my hand again. It’s bad.”

“I’m on my way.”

Recommended Reading
Illustration shows assorted pills and capsules hovering above the words

INM-755 Found Safe in 5 Adults With EB, Trial Opens to Adolescents

I flung the computer into my work bag and headed out the door. Jonah’s nurse, Clair, immediately called me back. She said he was stable, but it had been a bad fall. All of the skin had come off one palm, and both of his knees were blistered. Clair said the deep wound on his hand was filled with dirt and grass. I told her to leave it up to him whether he wanted to try to clean it before we got home.

I called the school on the way. They already knew what had happened. I asked them to check Jonah out and told them I was en route.

When I picked Jonah up, I wrapped my arms around him, and he sobbed against my chest. Even at 13, and even with a nurse, he still needs his mom. I love that he does. I hate that he had to.

We went home and spent an hour on his wounds. He picked out the grass with tweezers. We used suture scissors to drain the outer edges where the skin was still whole but was quickly blistering. We used Aquaphor, Bactroban, and five layers of dressings. It was excruciating for him. All I could do was keep plugging on, doing what I could to keep it from getting larger, and working to prevent infection.

I couldn’t rewind the clock. I couldn’t put the skin back on. I couldn’t take away his pain.

moments of joy | Epidermolysis Bullosa News | Jonah waves to the camera with his bandaged right hand after suffering immense pain following a fall

Jonah holds up his newly bandaged hand after a bad fall last week left serious injuries. (Courtesy of Patrice Williams)

I freaking hate epidermolysis bullosa (EB). It robs Jonah of so many simple moments. Like middle school gym class and a normal, pain-free afternoon with school friends. It broke my heart to see him in so much pain, yet again. I almost couldn’t bear to hear about him falling, just from being accidentally bumped from behind by a fellow classmate. And then immediately getting up and running away as fast as he could, so that his friends wouldn’t see him cry. I freaking hate that EB stole his joy. For the one-millionth time.

Two days later, we left for a weekend trip to Atlanta. We had tickets to two Atlanta Braves baseball games, on Saturday night and Sunday afternoon. Jonah had been looking forward to the trip for weeks. Truist Park, where the Braves play, is probably Jonah’s favorite place on earth, and there’s nothing he enjoys more than watching major league games in person.

moments of joy | Epidermolysis Bullosa News | Jonah and his dad, Matt, smile from their seats at an Atlanta Braves baseball game. Jonah is wearing a Braves T-shirt, sunglasses, and a baseball cap

Jonah and his dad, Matt, enjoy a Saturday night Atlanta Braves baseball game at Truist Park. (Photo by Patrice Williams)

Although Jonah was still hurting, and it had been a rough couple of days, I saw his joy come back. He laughed, smiled, and talked about a lot of baseball things (that I definitely didn’t understand) with his dad. He booed the bad guys and cheered the good guys. He yelled at the umps for making bad calls (from our nosebleed seats in the 400 level). He brought back some dance moves I haven’t seen in public since he was a preschooler. He literally sat on the edge of his seat. He said, “I’m so excited,” approximately 20 times.

And in all of those moments, we didn’t think about EB. We didn’t think about the throbbing hand weeping under those five layers of bandages. We didn’t acknowledge the blisters that were stealthily forming on his tender feet after the long walk to the stadium and then inside. We didn’t talk about the fact that he couldn’t eat a ballpark hot dog because of the blister in his throat.

moments of joy | Epidermolysis Bullosa News | Jonah stands with his arms spread wide before a massive wall painting of the 2021 MLB World Series trophy, won by the Braves

Jonah relishes a large depiction of the Atlanta Braves’ 2021 World Series trophy. (Photo by Patrice Williams)

We just soaked up the moments of distraction from his harsh reality — our harsh reality. We sat basking in the joy of this great American pastime.

moments of joy | Epidermolysis Bullosa News | A closeup selfie of Jonah and Patrice

Jonah and Patrice wait for the gates to open at a Sunday afternoon Atlanta Braves baseball game. (Photo by Patrice Williams)

I’ve never been a sports gal, or at least not before I was married to a sports nut with two sports-loving sons. But I’ll tell you right now, I thank God for baseball. I know for a fact that God didn’t give Jonah epidermolysis bullosa. But in watching him enjoy those core memory moments, I wouldn’t be surprised at all to know that God created baseball just for him.

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.


Leave a comment

Fill in the required fields to post. Your email address will not be published.