Here’s to Hoping the Good Memories Will Always Outweigh the Bad

Life with epidermolysis bullosa means treasuring those moments of joy

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by Patrice Williams |

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Recently, the Carolina Classic Fair came to our hometown. For 10 days, children, teens, and adults in our community enjoyed rickety rides, local crafts, giant produce, pickle pizza (no, that’s not a typo), and way too many questionably deep-fried foods. For most fairgoers, it meant days of fun and probably ride sickness.

My husband, one of our sons, and I were making the rounds while our other son, Jonah, who was born with epidermolysis bullosa (EB), was off with a group of friends from school. We texted several times while we were apart: “Where are you?” “What are you doing?” “Are you OK?”

Sometime during that two-hour period, Jonah played the game in which you throw a pingpong ball into a fish bowl. Naturally, the prize is a goldfish. We happened to walk by the game just as he was purchasing his six balls. (“Buy five balls, get one free!”)

Me: You are NOT bringing a fish home from the fair.

Jonah: (Cheered on by his eighth-grade posse as he hands over his money) LET’S GO!

Me: No, like for real, no bowls. No cages. You’re not bringing home anything that’s going to be more work for me. Because, like, I just can’t.

Jonah: (Ignoring me like the 13-year-old he is) Here, fishy, fishy.

Jonah threw five balls unsuccessfully. But the “free” sixth one landed with a satisfying kerplunk in a glass bowl.

A selfie of Jonah shows him holding his newly won goldfish in a bag at the fair. Jonah is wearing dark sunglasses and a black T-shirt and is clearly screaming in victory. Behind him are his school friends.

Jonah shows off his newly won fair fish, with a couple of school friends. (Courtesy of Patrice Williams)

Me: (Mouth agape) I hope one of your friends loves their new fish.

A fish’s fate

Jonah named the fish Diego Falafel Williams II. And he thankfully gave Diego to his friend Reid, with Diego’s last name rightfully becoming hyphenated.

“Where was Diego the First?” I later asked.

Jonah rolled his eyes.

Because of EB, rather than a full day, Jonah had about two hours of brave-faced enjoyment with his friends, and then he was done. Finished. His feet were kaput. He was, as my late Maw Maw would’ve said, “plum wore out.” I had tried to convince him to take his wheelchair, but he wouldn’t hear of it. He wanted to be one of the boys. He wanted a day of normal.

And, of course, I didn’t blame him.

But soon his text came: “Where are you?”

I told him where we were. “Need us to come get you?” I asked.

“Yes. Feet really hurt.”

And so his day was over. I went to find him and walked him the half mile back to the car. Meanwhile, the boys’ dad, Matt, stayed with Gideon, our youngest, so he could get another hour of riding in while we waited in the car. And that’s the unfairness of EB. It’s unfair to the child who suffers it, whose day ends too early, and who has to wait in the car. And it’s unfair to the sibling, too, who has his own time limited and his family split up for what should be a family-focused day.

Tragically, the bad news continued as Jonah learned from his friend the next day that his dear fish had passed away. (This was a complete and utter shock, as fair fish are known for their longevity.)

When Jonah found out, he sent a group text to his dad and me.

Jonah: I’m so sad. Diego died.

Along with this image:

A meme Jonah created for an Instagram story shows a close-up of a goldfish with white spots. The text at the top states: "In loving memory of Diego Falafel Williams-Musser II." At the bottom, the text states, "Loving friend, bro, and son."

Jonah posted an obituary to his Instagram story for his unfortunate fair fish, Diego. (Courtesy of Patrice Williams)

Matt: Devastating. He made such an impact despite being in our lives for such a short time.

We have laughed and laughed about that stupid (I don’t really mean it, Diego, wherever you are), unfortunate fish.

I pray every day that despite his pain, his challenges, and the complete injustice of EB, Jonah will continue to have amazing friends, moments of mom rebellion, and weird attachments to fair fish. That the funny will outweigh the sad, the fun will outweigh the pain, and the good memories will, more often than not, outweigh the bad.

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.


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