Remembering to Anticipate the Good
“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.
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!
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.
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.
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.
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.