*This is part four of Julie’s story. The rest of her story can be found here: part one, part two, part three.
We continue with Julie’s story. She still has not found a diagnosis. But, is now a mom of three after the birth of her third child, a boy. He also has the same skin condition as his older brother and sister.
Although most of her time and energy was spent on taking care of her kids and dealing with their skin issues, there was still a sense of urgency in finding out what the condition was.
Finding a diagnosis, sort of…
Then in the most random way possible, Julie reads an article about a woman who has a rare skin condition, and the symptoms described in the article sounded very familiar. The condition was epidermolysis bullosa (EB). It’s the name for a group of rare genetic skin disorders that causes the skin to be fragile because the hooks that hold the skin in place are not formed correctly. Meaning any amount of friction will cause blisters since the skin’s not securely attached.
The only way to test for EB was by a skin biopsy. But the kids were too little to have a biopsy. So Julie’s husband got tested instead. The rationale being since it was an inherited condition, if he tested positive then theoretically it means the kids also had EB.
The results confirmed her husband had EB. Having the diagnosis meant Julie could learn more about the condition and even explore better treatment options. She also quickly learned not many medical professionals (or the general public for that matter) knew much about EB. This meant she had to educate them on the condition.
Adjusting her perception
But Julie also learned her perception needed to be adjusted as well. One of the kid’s doctors pointed out that EB was not a minor skin condition. It was a disability. It affected every part of the kids’ lives, from the clothes and shoes they wore, to the types of activities they participated in. It was debilitating. Definitely something they weren’t going to outgrow. Instead, it would be an issue they would have to deal with for the rest of their lives.
Intellectually it made sense. Yet no one looking at her kids would call them disabled. There was nothing about their appearance, mannerisms, or speech that indicated they had a disability. They didn’t fit the stereotype. As a result, the kids faced a lot of bias.
Letting go
When they were younger, Julie dealt with the negativity by educating and informing everyone about EB. But as they got older, not all the kids liked having their mom discuss their personal business with everyone. They just wanted to fit in and be like everyone else.
So Julie had to balance her desire to protect them with respecting their privacy. She also needed to let them learn to fight their own battles. After all, they were the ones who had to live with EB.
It’s a lesson all moms have to come to terms with at one point or another. Because our job isn’t to baby proof our child’s life so they will never feel any hurt. Instead, our job is to teach them how to live in this world that holds both beauty and pain. And so Julie had to learn when to let go and cheer from the sidelines.