Jonah Is Fighting to Live Out His Baseball Dreams

My son Jonah loves baseball. He watches almost every Atlanta Braves game on TV and looks at MLB highlights on YouTube every morning. He plays it on PlayStation 4, with a plastic bat and rubber ball in the backyard, and with a soft ball and bat in the living room. He talks about it, thinks about it, and memorizes player stats.

At 12, he knows more about baseball than almost anyone I know, and is even starting to give his baseball-loving dad a run for his money. He is an honorary coach on his brother’s 8U travel team. And for years, he has dreamed of playing on a real team himself.

But suffering the painful and unrelenting effects of junctional epidermolysis bullosa has prevented that until now. He can’t swing a regulation bat, and the hard core of a regular baseball kills his hands upon impact. It hurts to run the bases, and his physical limitations slow him down. But last week, my brave boy joined a real baseball team of his own for the very first time.

And I am so freakin’ proud of him.

Jonah, center, at his first practice. (Courtesy of Patrice Williams)

We were blessed to discover Sandlot baseball in a neighboring town. Sandlot is a noncompete league designed to help kids find their own unique talents and learn to love sports. Now, that does not mean that true baseball rules don’t apply. Jonah would have none of that.

Sandlot follows normal baseball rules, but without all of the heavy regulation of “normal” leagues, meaning Jonah can use a lightweight bat and a rubber T-ball when he hits, and the league will make other modifications for him as needed.

I watched him at practice on Tuesday limping as he ran the bases. I saw him cringe when he caught the ball. He got blisters on four of the five fingertips on his throwing hand. The next day, I drained a huge blister on the bottom of his foot from running the bases, and he could barely walk. 

Still, he said that it was all worth it and was one of the best nights of his life.

But I’m scared. It is so hard to watch him hurt. Others may not notice the grimaces and limps like I do, but I know the meaning of the look in his eyes and the suffering behind that tight-lipped, forced smile on his face. I hate for him to suffer physically.

Even more, I can’t stand to see him hurt emotionally. I will not stand by while he sits and watches his brother and classmates play the sports they love. If he wants to do this, we are behind him every step of the way — every blister we have to drain, every foot we have to bandage, every finger tip we have to wrap. 

Jonah, left, throws the ball to first base. (Courtesy of Patrice Williams)

When I asked what playing means to him, Jonah said, “I’m terrified but excited. I felt terrible after the first practice, but it’s worth it. I’ve never done this in my life, and I probably won’t ever get to do it outside of this league. So, I’m going to enjoy it while I can.”

And enjoy it we will. We’ll soak up every strikeout and every base hit. We’ll relish every base gained and be thankful for every out. We’ll be excited as he makes new friends and becomes a good teammate. Most of all, we’ll be proud of him as he learns that the things he is most passionate about in life are worth fighting for.

We’ll be creative in finding solutions and trying to make it easier on his fragile body. But even when there is no solution, in his incredible strength, he’ll fight to do what he loves. And we are so honored to walk with him while he does it. He finally gets to live out the dream beyond those iconic words, “Play ball!”

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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.