Living with EB requires creative problem solving
My husband and I knew we would have some issues to deal with after the birth of our son Jonah with epidermolysis bullous (EB). You should think about things like wound care, bandage, tube feeding, and weight gain. What we didn’t know was how creative we had to get to solve the many “little” problems in life with EB. We have come to call it “settle on a survival plan ”or“ Meh, good enough. “
These are things like remembering to bring a mug wherever we went when Jonah was a baby because we knew he would To vomit at least once during our absence. At the beach with the extended family we had to plan to have our own condo across the street instead of staying in the “big house” with all the cousins because we knew we would need the extra space for them. dressing changes and tube feeding preparation.
Sometimes we knew we would need a Wheelchair, mnot because Jonah cannot walk, but because if he has to walk too far, he suffers, and that robs him of his joy. In the summer, we knew that if he wanted to go swimming, we had to have at least a four hour window – two hours for swimming and two hours for the bath and the dressing change that we had to follow. To beat the heat, we had to plan to bring cooling gaiters and portable fans everywhere we went.
And shoes! We knew we would end up buying every pair of shoes until we found the one pair that would fit on his bandaged feet and returned all the others. Or that we would pay over $ 200 per month for supplements like Shakeology, flaxseed oil and Greek yogurt to increase calories in foods covered by insurance Mixtures of real foods. When we went to an event or concert, we got seats at the end of the row, preferably in ADA areas, to make it easier to get out if there was a problem and to keep him from getting hurt in the crowd.
The list goes on and on and on.
Several years ago I realized we had to figure out how to celebrate Halloween in a way that her feet and body could handle. When he was a baby and toddler, it didn’t matter because he could get into a stroller and only had to walk to the houses. But once it got too big for the stroller and the wheelchair and became “so not cool for trick-or-treat, mom, we had to come up with a new plan. This plan turned out to be kind of a “Patrice, you’re a fucking genius” plan. And this is the one my two boys love.
Each year, I choose eight or nine friends’ houses to visit. I connect ahead of time with everyone on my list, get their addresses, and then plot the most efficient route in town. We go from house to house in our car and the boys never know where we are going or who will be behind the next door.
They love “not knowing” everything, and the people we visit are delighted to see them. Often, boys are given their own personalized bags!
As part of our Halloween tours, we always visit the two local grandparents, of course, but we also mix things up and visit church families, old friends or neighbors, coworkers. and baseball friends. In each house, we say hello, we spend a few minutes chatting and making treats, then we take a picture!
I love it too, because it reminds me of the days of my grandparent’s generation when you would ‘visit’ and visit friends and relatives, often without notice, just to hang out together.
Many of the problems that we are forced to resolve are frustrating, disheartening and infuriating. But this particular “problem” has led to such a sweet moment of brotherhood that we look forward to each year. My husband, Matt, is our driver and enjoys it normally, but this year Halloween came across Game 5 of the World Series with our beloved Atlanta Braves, and he was, “OK, but we have to be back for the first throw at 8:09, so hurry up already.
It’s never a bad time to ‘go sightseeing’, but it’s even better to do it dressed in a costume and score tons of candy at the same time.
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