Making sure to remember how far we’ve come while living with EB

This has been the summer of trips, which is totally unlike our typical summer. We go to Cousin Camp annually, but it’s typically the only big trip we take. But recently we were invited by family to come to Montana for the week, and we absolutely could not pass it up. We were all excited, of course, but for my horse- and wilderness-loving heart, Montana was absolutely a bucket list item. So I happily booked those plane tickets, and we headed west!

That may not sound like a huge thing for folks who travel often, but when I think about the freedom to take that kind of trip compared to where we were years ago, I almost can’t believe it. During my son Jonah’s early years, when everything felt so dire and I was a stay-at-home mom/nurse-by-necessity because of his epidermolysis bullosa (EB), if we could make it to Target and swing by Chick-fil-A for a sweet tea, it felt like a small miracle. (Special shoutout to all the complex-kiddo mommas who know exactly what I’m talking about!)

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In addition to external blistering, one very common symptom of junctional EB is severe reflux. For the first three years or so of his life, Jonah’s reflux was horrific. I literally remember being so concerned about his calorie intake that after he inevitably projectile-vomited his entire bottle, I’d be down on the floor in tears wiping the puddle up with a hand broom and dustpan trying to measure it to see how much — if any — he’d kept down.

Jonah and his family visit Yellowstone National Park in early August. (Courtesy of Patrice Williams.)

On the rare occasion we went out to dinner, we had a large cup that we carried with us in our diaper bag to have on hand for when he vomited. We never force-fed him solids, but even smelling or seeing our food on the table near him could make him gag and throw up.

When he was still in a rear-facing car seat, just the simple act of laying him back (plus some likely anxiety about being away from home) would make him throw up. Imagine, if you will, a baby covered in fresh, clean bandages you just spent two to three hours applying, vomiting all over himself, requiring not only a car seat wash (for the love of nooks and crannies!) but a complete bandage do-over.

Like I said, horrific.

With his feeding tube, intensive feeding therapy, and time, we finally made it through those years. Still not a lover of many textures (he hasn’t yet met a vegetable he likes), there are still so many foods Jonah eats and enjoys. And I can eat my vegetables in peace next to him knowing I won’t have to break out our “puke cup.”

I’ve written before about bandage changes and tube feeding while on vacation. It’s tough, but worth it to take the trip. But I often forget what it used to be like when we couldn’t even go up the street without risking severe anxiety, 8 ounces of vomit, and redoing a three-hour dressing change.

I was so loved and supported in those dark, early days by friends, family, a faith community, and even an online community. But regardless of being surrounded by love, you can still feel so alone when you can’t do simple things like go to the park or leave your child in the church nursery. I think sometimes I’ve blocked out how hard it was and how unfair it all felt at the time.

Jonah relaxes on a raft on Montana’s Madison River. (Courtesy of Patrice Williams)

Of course, what we have faced has made us live intentionally and love more deeply, but that doesn’t mean it was easy or that I wouldn’t change it all if I could go back. But watching Jonah in Montana a couple of weeks ago reminded me how so much has become possible through the years that I wouldn’t have known to imagine back when I was crying in my garage with a puke-covered baby, feeling like any level of normalcy was completely out of reach.

I absolutely loved watching Jonah get to experience the bison (6 inches from his window!) in Yellowstone, gently raft the Madison River, attend a rodeo, explore caverns, and make friends with a neighbor’s mule. These once-in-a-lifetime experiences were not just bucket list items for me, but mine for him, too.

Adventuring in the mountains of Montana is a long way from barely making it up the street to Target, and I could not be more thankful for how far we’ve come.

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.