Manifesting a Merry Christmas, Despite the Unpredictability of EB

Thanksgiving is my favorite holiday. It’s all the feelings of togetherness and nostalgia without the commercialism and money-spending of Christmas that totally stress me out. I was so looking forward to the day with my extended family — until my son Jonah, who has epidermolysis bullosa (EB), got the flu.

The Sunday before Thanksgiving, he started running a 102.8-degree fever. Tamiflu helped him get over the worst of it, but of course, two of the remaining three of us ended up getting sick, too.

We had to cancel our plans and eat at home, just the four of us. And it was OK, but it didn’t feel like a normal holiday.

Jonah, right, and his family, sick with the flu, eat Thanksgiving dinner at home. (Photo by Patrice Williams)

I’m looking forward to Christmas this year. Last year, we had just moved into our new house, on Dec. 15, and boxes were everywhere. We had barely unpacked, and the only reason we even had a tree up was because a friend had offered to help.

On Dec. 22, after waking up with a corneal abrasion, Jonah endured a horrific oral surgery. What followed were nine days of the most horrific EB-related pain he’s endured since his traumatic birth. Of course, we tried to make the best of it, but he and I were pretty miserable. Watching your child suffer is, I think, the worst pain a parent can endure.

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So now I find myself wanting to do all the things. I’m typically pretty low-key when it comes to the holidays, but this year, I’ve been thinking things like, “Maybe I should put up two trees,” or, “We should make and decorate homemade cookies,” or, “I should probably climb on the roof and put up lights.”

The reality? Nobody in my family likes tree-decorating. I don’t bake. We live in the middle of nowhere and no one would see the lights anyway. Also, I don’t own a tall ladder.

But it’s funny, my need to overcompensate for sucky Christmases past. There was the Christmas when Jonah was 5 and his grandparents had tickets to take him to “Disney on Ice: Frozen and Friends.” He developed a severe corneal abrasion and had to go to the show with one eye patched and in debilitating pain.

There was Christmas 2020, when he woke up with an excruciating wound in such a terrible place that he could barely enjoy the day.

And, of course, there was last year, which we should just refer to as “the Christmas that should not be named.” I don’t have one picture of him from last year where he’s showing his face. He’s either turned away from the camera or covering his face with his hand because of the state of his mouth and lips. It was heartbreaking.

Jonah, 5, attempts to smile and enjoy “Disney on Ice,” despite a corneal abrasion, in December 2014. (Courtesy of Patrice Williams)

But this year, there’ll be no moving and no surgeries. Odds are that Jonah won’t get a corneal abrasion or wake up with a horrid wound. Anybody want to pray, rub a rabbit’s foot, or cross their fingers that we might get a normal holiday?

Of course, epidermolysis bullosa can rob you of joy at a moment’s notice. There’s no predicting how it might ravage your life on any given day. Things can be fine one minute and become disastrous the next. You can wake up with a painfully blistered cornea and have to spend the day in the dark. You can slip and fall and sheer all the skin off of your face or hands. You can wake up with blisters in your mouth or on your tongue that prevent you from eating, smiling, or even talking.

But this year, I’m speaking a happy holiday into existence. I’m manifesting all the joy. Whether my family likes it or not, Alexa will be playing all the Christmas carols. There will be baking and cookie decorating. I might even pull out the gingerbread village that’s still in the box from our move last year. We will put up and decorate two trees, and we’ll like it, goshdangit.

In the words of Clark Griswold, “We’re going to have the hap-hap-happiest Christmas since Bing Crosby tap danced with Danny [expletive] Kaye.”

And I dare EB symptoms or any less-than-merry family member to mess it up. No scrooges allowed. Say, “Bah, humbug!” and you’re gonna get it. You will hang that ornament and you’ll like it. You’ll decorate that gingerbread house with a smile. Joy will ooze from your pores as we drive around looking for Christmas lights. The firelight will glow in your eyes as you share what you’re most grateful for this year. There will be cider and hot chocolate. And there will be peace on earth. Even if it kills us.

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.