Life Is Hard, but We Choose Joy Anyway

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by Patrice Williams |

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On Saturday night at 10 p.m., when we were exhausted and had spent the entire day at the baseball field, I got an idea — or a bee in my bonnet, as older folks in the South like to say. I decided I wanted my boys to hunt for their Easter baskets when they woke up on Sunday morning.

So, trying my hardest to make words rhyme while exhausted (“treats” and “feets,” “this” and “whisk” — I didn’t say it was good), I came up with 11 clues that sent them on a scavenger hunt throughout the house. I recorded video of the whole thing and posted it on Facebook so the whole Meta world could see how amazing it was. They likely did not feel as passionately about it as I did, but it brought me so much joy!

I spent all of last weekend smiling at life (except for several moments during a baseball game in which a certain umpire couldn’t tell the difference between a ball and a strike).

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Remembering to Anticipate the Good

On Friday night, we went to a Winston-Salem Dash baseball game here in North Carolina, with the boys’ baseball team and their families. All of the boys got to take the field before the game and play catch. Due to epidermolysis bullosa (EB), it really hurts my 13-year-old son Jonah’s hands to catch and throw a baseball, so he opted out. But he went on the field, took in the sunshine and the views with his team, and smiled and laughed as he watched them play. Even though he couldn’t fully participate, he chose joy anyway.

Epidermolysis Bullosa News | A long-distance photo of Jonah's brother's baseball team playing catch on the Winston-Salem Dash baseball team's outfield in North Carolina

Jonah watches the players on his brother’s baseball team, which he manages, play catch on the Winston-Salem Dash baseball field in North Carolina. (Photo by Patrice Williams)

On Saturday, at the ball field, Jonah hit his wrist really hard on a kid’s batting helmet. I walked (400 miles) back to the car, got the emergency bandage supply I keep in the trunk, took him to a nearby field’s empty dugout, drained the already-getting-huge blister, and patched him up. The pain brought him to tears. But he stayed in the dugout for a while to get himself together, and then came back to join the team. We went on to the championship game. And we chose joy anyway.

Epidermolysis Bullosa News | Jonah and his brother's baseball team pose on the baseball diamond and hold a banner stating, "2022 SWAT Tournament Finalist."

Jonah, front row, third from left, his brother, Gideon, front row, far left, and teammates and coaches pose for a team photo after placing second in last week’s 9U baseball tournament in Clemmons, North Carolina. (Photo by Patrice Williams)

Jonah’s face lit up again on Sunday morning when he dug to the bottom of his Easter basket and found his first ever cellphone. He immediately texted his seventh-grade friends group to let them know he had gotten a phone for Easter and was immediately rewarded with words of affirmation.

“Bruh!”

“Let’s go!”

“Yessir”

“Sick”

(And other ones I didn’t fully understand. “Slaps” means something different than it used to, apparently.)

I was overwhelmed by his joy. And I’m so thankful for his friends, who love him so much, even though he doesn’t fit the typical mold. They invite him over to watch sports and ask him to come to their birthday parties. (And they text him now. A lot.) They miss him when he’s not around. And I don’t know why I’m surprised, because he’s obviously so amazing. But I’m just so thankful that this group of seventh-graders sees it, too.

And because of our crazy schedule on Saturday, Jonah was way overdue for a bath and bandage change, so we didn’t get to go to church on Sunday morning like we had hoped. But I livestreamed it while we did a dressing change, and we chose joy anyway.

I spent all of Sunday afternoon sitting in the dirt and pollen, planting flowers. My knees creaked and I got dizzy every time I stood up — getting old is the worst — but all I felt was joy. I looked at my husband, Matt, at one point after finishing a plant, and then looked around and said, “This is my dream life … Also, can you help me? I’m definitely stuck.”

There is something about this time of year — spring, trees, flowers, birds, sunshine, and butterflies — that gives me so much hope. I love seeing dead things come back to life. And certainly we have watched many of our dreams die over the last 14 years.

But I’ve also seen these dead dreams come back to life in new and different ways. Sometimes it’s in the big things, but more often than not it’s in the everyday stuff: Dancing to “Ice Cream and Cake” while holding a friend’s toddler at a local minor league game. Shoving french fries, hot dogs, and Gatorade through dugout gaps between innings during three back-to-back 9U games. Writing dumb clues that don’t exactly rhyme for scavenger hunts. Laughing along with Jonah at funny texts from his best friend. And digging in the mud.

I know blisters will keep coming. The boys will go back to arguing. The pollen hangover will follow the planting. Not every day can be a scavenger hunt.

But the joy still will always come. And I’m here for it.

Epidermolysis Bullosa News | Jonah, in a red and blue shirt with blue protective sleeves, smiles as he holds an adorable puppy named Muggsy

Jonah smiles big while holding his puppy, Muggsy. (Photo by Patrice Williams)


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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