Overcoming the Bad Days and Finding Joy

We have good days and bad days, and good weeks and bad weeks. Twelve years into our fight with epidermolysis bullosa, we’re pretty used to the ups and downs. But two weeks ago, we had one of our worst weeks ever. 

It started on Tuesday night when my son Jonah had a horrible baseball practice. He was hurting to begin with, and his feet were pretty torn up. But then he did too much too repetitively at practice, and ended up in a bad place.

He switched to the outfield after playing second base for the first half of practice, and I could tell by the look on his face that he was hurting. I had one of his coaches check on him (because apparently it is not cool for your mom to come onto the field), and after chatting a moment, he and Jonah walked off the field, with Jonah in tears. 

His hands and feet were killing him, and he couldn’t even describe the pain because it was everywhere. He was so deflated. He was excited at the beginning of practice, and to see him hurting so badly and feeling so disappointed in his body broke my heart.

We both cried at practice, and continued crying when we got home. I laid my head on my husband’s chest in bed later that night and talked about the unfairness of it all as tears slid down my cheeks.

We all woke up exhausted and emotionally spent on Wednesday morning. Then, when I was dropping off Jonah in the school car line, I thought he was out of the car when he wasn’t. I started to pull away, and my car knocked him down to the curb. He busted up his hand, his hip, his thigh, and his ankle.

His nurse took him inside the school while I parked the car, and we worked together to bandage him up in the hallway. He and I both sobbed our way through that, too, and of course I was wracked with guilt and shame over my stupid, distracted mistake.

I ended up going into work a couple of hours late because I couldn’t get myself together. Wednesday afternoon’s bath and dressing change were incredibly painful for Jonah because of his new, raw wounds.

On Thursday, we celebrated the 13th birthday of our first son, Gabriel, who was stillborn in 2008. It is always a heavy day for me, but with the baseball struggles and almost running over him with my car, the day was especially difficult. We now know that the same evil disease that was making our week miserable is likely what stole our first son from us.

From left, brothers Gideon and Jonah visit the grave of their older brother, Gabriel. (Photo by Patrice Williams)

Some weeks, the pain of EB is so intense it feels like we’re experiencing its cruel reality for the first time. Some days, the pain is so raw, I feel the same incredulous, fearful, disbelieving anger and sadness I did on day one. Day one really sucked. Days 4,432–4,434 sucked almost as much.

But this past week was pretty incredible. Jonah had a relatively pain-free week, and last Saturday, he played in his first baseball game. He got two at-bats, singled on one, and then scored a run. He played great in the field. It was cool watching him apply all of the fundamentals he’s learned by watching the Braves and YouTube videos, playing MLB: The Show, and helping out with his brother’s team. He was full of joy.

Jonah warms up in the on-deck circle at his first game. (Photo by Patrice Williams)

When he got up to bat both times, I noticed him drawing in the sand with his bat. I asked him about it afterward. He said that each time he was up to bat, he had prayed and drawn a cross in the sand. I asked him what he had asked God for. His response? “It wasn’t really an asking prayer. I was just thanking him that I got to be there. I asked him, whether I struck out on a bad pitch or hit a home run, to help me to be thankful.”

Jonah said that after his first at-bat, when he was thrown out at first, he could have cried. He said, “I didn’t want to cry because I got out, but it was pretty emotional for me. Being there. Getting to do it. I was just really thankful.”

Team members huddle after Jonah’s first baseball game. (Photo by Patrice Williams)

Despite the bad days and the inevitable disappointments, somehow he overcomes. He could live in a constant state of anger or sadness. He has every right to feel that way. But instead, he keeps pushing, chasing his dreams, fighting for joy. His resilience, determination, and faith continue to inspire and astound me. And in tears, now for a different reason, I thank God that he chose me to be Jonah’s mom.

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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.