Remembering to Anticipate the Good

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by Patrice Williams |

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“Dilly Dilly!” Jonah said as he drank yet another virgin strawberry daiquiri. “Do we have these in America?” he asked with pink-tinged lips, looking hopeful. He finished, yanked off his shirt, G-tube shining, and headed to the wave pool. Again.

good times with EB | Epidermolysis Bullosa News | Jonah reclines on a lounge chair under an umbrella at a resort in Mexico. He is smiling and holding a virgin strawberry daiquiri.

Jonah enjoys his new favorite drink, a virgin strawberry daiquiri, in Mexico in March. (Photo by Patrice Williams)

On our recent trip to Mexico, Jonah, who has epidermolysis bullosa (EB), was living his very best life. But the truth is, I didn’t really want us to go. Leading up to it, all I felt was anxiety.

What if the suitcase with the bandages gets lost? It’ll be so hard blending meals in a hotel bathroom. We will have to do bandages every single day! What if he gets sores in his mouth and can’t eat while we’re there? Should we really go on that excursion? It’ll be a ton of walking, and he won’t agree to use a wheelchair. We have to pass a COVID-19 test before we can fly back. What if we get stuck in Mexico without enough bandages? I guess I’ll just have to pack everything!

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We’d been planning this trip for years, and I couldn’t even be excited. I faked it well enough, but my expectations were low. In addition to the EB stuff, I was also factoring in Gideon, our son with severe attention-deficit/hyperactivity disorder, who likes to change activities every 45 minutes.

This super expensive trip will be the complete opposite of relaxing. Why are we even doing this?

But watching Jonah drink his fruity beverages, take off his shirt without an ounce of shame, play in the wave pool, glide down the resort’s lazy river, and devour food at the buffet made every ounce of anxiety worth it. Why had I spent so much time worrying about things I couldn’t control? Why do I always put the weight of managing the unknown on my shoulders? It’s unrealistic, and it’s a waste of my emotional energy.

good times with EB | Epidermolysis Bullosa News | Jonah stands in the shallow end of a pool at a resort in Mexico. He's wearing bandages on both of his arms, and several blisters are visible on his face, chest, and abdomen. His G-tube is also visible just above his belly button.

Jonah enjoys one of the many pools on his recent vacation to Mexico. (Photo by Patrice Williams)

Maybe all mothers do this. But moms to special needs children take it to the next level. We have spent years in survival mode, doing everything we can to find solutions to impossible problems and anticipating what might happen at any given moment. We have learned to anticipate and preemptively solve a problem before it’s even happened. We live in a constant state of anxiety and exhaustion.

And then we fake-laugh and say, “I need a vacation.” But what we mean is, “Please just let me sit by myself on the porch and don’t talk to me. Extract all of these worries out of my brain and think on them yourself for a while, thank you very much. Also, bring me a lemonade.”

This life is hard. And constantly thinking about everything can make you feel like you’re going crazy.

Jonah went over to a friend’s house this past weekend for a party, and I could barely sleep because I knew he had several big blisters on his hands that he hadn’t allowed me to drain before he left. And what if my husband forgot to put Jonah’s eyedrops in before he went to sleep? He’d definitely get a corneal abrasion.

Spoiler alert: He did have big blisters, but he didn’t die. And Matt, my husband, did in fact remember to put in Jonah’s eyedrops, like he’s remembered to every single time he’s ever been in charge of bedtime.

But back to Mexico. It was amazing. Jonah’s skin was great. He didn’t get mouth wounds. He loved the food. The excursion was, in fact, too much walking, but the next day he was back at it, no worse for wear. We were able to put Gideon in the resort’s day camp, meaning he got constant action, and we were actually able to relax.

I sat on a beach lounger, wore a floppy hat, and read a book. I also drank strawberry daiquiris and limitless Diet Coke. I ate pico de gallo on all my food for six straight days. I watched baby coatis fight over an ice cream cone. I slept soundly and woke up slowly.

good times with EB | Epidermolysis Bullosa News | Patrice takes a selfie while relaxing on a lounge chair on the beach in Mexico. She's wearing dark sunglasses and a floppy hat.

Patrice relaxes on the beach in Mexico. (Photo by Patrice Williams)

Was it hard? Yes. There was still the reality of EB: making meals in a hotel room, tube-feeding three times a day, daily baths and bandages, and altering activities to make them EB-safe.

But it was so much better than I ever would’ve expected. And although it’s good to anticipate and prepare, it’s also OK to let myself get excited. To attempt to be fully present in the “leading up to.” Because in the end, all these two boys will remember is that they had the best vacation of their lives.

good times with EB | Epidermolysis Bullosa News | Gideon and Jonah pose next to a large rock that's engraved to read "Xcaret Mexico!" Behind the boys are palm trees and several macaws perched on a tree branch.

From left, Gideon and Jonah smile at Xcaret Park in Mexico. (Photo by Patrice Williams)

And maybe I should have spent more energy anticipating that.


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.

Comments

Ginger Trowbridge avatar

Ginger Trowbridge

Hi Patrice,
I am amazed at your courage. I am 67 years old born with EB. I went through my struggles and survived. Although I think my case was not as severe as Jonah's it was still very difficult. At this point in my life, I know EB has made me a stronger person in so many ways and it takes a long time to understand that. Take some time for yourself if you're able and know that your son will always thank you for being there. I appreciate my parents every day for all they did.

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