*This is part five of Julie’s story. The rest of her story can be found here:
part one, part two, part three, part four
Julie’s search has finally ended. Her resolve and resilience paid off. At last, they had a name for the mysterious skin condition that affected two generations of her husband’s family. It was a rare hereditary disease called EB that causes the skin to be very fragile.
Finding the diagnosis was just one part of her journey. Just as equally important is supporting others who have children with this same condition. This is in addition to educating and helping combat biases and stereotypes that come from having a non-apparent or invisible disability. Because a skin disease isn’t what people think about when the word disability is mentioned. Since her kids are now young adults, she’s also teaching them how to educate others about EB.
Leaning in
She’s encouraging them to lean in (as she calls it) to the challenge. It’s not easy and sometimes it’s just plain uncomfortable but backing down isn’t an option. This is their life after all.
However, watching her kids come to terms with their disability was one of the harder aspects of her story. Of her three kids who had EB, her daughter wrestled with it more than her sons. Largely because she was limited on the types of shoes and clothing she could wear due to how it would affect her skin. But all she wanted was to wear what all the other little girls wore.
It broke Julie’s heart to see her daughter struggle. She didn’t want her to feel excluded or feel like a freak because of her skin condition. Julie understood what that felt like and didn’t want her daughter to go through the same pain. Unfortunately, it wasn’t Julie’s battle. She couldn’t make her daughter’s troubles go away or take away her pain, her daughter had to work through that herself.
In some ways, it was easier to deal with the physical needs of EB rather than the emotional ones. Because dealing with the physical required no thinking, it was automatic and all about following a treatment plan. Emotional needs, on the other hand were harder to diagnose and treat. Sometimes it would take years to work through those issues.
But it didn’t matter what Julie was dealing with because the one constant throughout her story is Jesus. Regardless of what she’s grappling with (whether that’s emotional or physical) she brings her concerns to God by praying about it and reading the Bible. This gives her solace and the strength to rise above those challenges. It’s not like they’re not there. They are. But she’s choosing to focus on Jesus.
Asking for help
Other than turning to Jesus, the next advice Julie would give anyone who has a child with a disability is to ask for help. She admits she would’ve liked to have had more support from those around her. Especially since her husband’s family wasn’t much of a resource because they didn’t want to talk about EB (read more about that here). But she also didn’t get much assistance from people who she thought should’ve been a great support for her. These were the people she went to church with and volunteered alongside. People she considered her friends. She had hoped they would’ve reached out to her and offered assistance. But they didn’t. No one even tried to understand what was going on in her world.
A large part of the reason was that she didn’t know how to ask for help…or who to turn to…or even know what to ask. She was just so busy doing. She really didn’t have time to figure out exactly what she needed. But she wonders if she had that community, would it have been easier when the kids were little? She believes it would’ve been because just sharing what we’re going through with another person automatically makes the burden lighter.
That’s why she suggests we find one or two friends who we feel comfortable sharing our struggles with, then be real. Be honest about our problems. Get messy. Allow them to enter our world because having a community makes the journey more pleasant.