*This is part two of Julie’s story. Part one can be found here.
This month’s Conversations is with Julie. Her story is about resolve, resilience, and most importantly her relationship with Jesus Christ. She says without it her circumstances would’ve been overwhelming and it’s easy to see why. She was raising five kids. Three of them had a rare genetic skin condition many people knew nothing about. This opened the door for a lot of judgment and unfair criticism both towards the kids and Julie’s parenting. Forcing her to not only educate people but also confront their stereotypes about disability.
On top of all this, she would also have to take care of her aging parents who lived out of state. It’s clear to see how all that can be stressful mentally, physically, and emotionally. This is why Julie says she wouldn’t have survived without Jesus in her life. It was His strength and wisdom that helped her. Otherwise, she admits she would’ve drowned under the weight of her circumstances.
The family motto
Before we dive deeper into Julie’s story, it’s important to get some background. The rare skin condition her children were born with, first appeared in her father-in-law. His parents viewed it as something to be dealt with, not talked about, so it was never openly discussed. And Julie’s husband, who also had the condition, was raised with this same mentality.
So much so that even after he met and married Julie, he didn’t tell her much about his ailment. She knew he had some skin issues but that was all she knew. This was why when they finally decided to have children, Julie wasn’t worried about her pregnancy. She wasn’t thinking her baby would have a genetic skin condition. It was the furthest thing on her mind. Although, her husband admitted it was at the back of his.
First pregnancy
A day after the birth of her son, Julie (and her husband) knew their baby had inherited the family skin condition. But unlike her husband’s family, Julie didn’t want to just deal with it. She wanted to talk about it. She wanted to know what it was, what caused it, and the best ways to treat it. Just dealing with the symptoms was never going to solve anything. The only way to do that was to talk about it. To bring it out and have a discussion.
Unfortunately, the group of people who should’ve been a great resource for her, weren’t. Other than recommendations on what worked, her in-laws still stuck to their motto of “dealing with it, but not talking about it”. This meant Julie was pretty much on her own. She had to figure out what it was based on whatever data she could find. Bear in mind, this was a time when information wasn’t as easily accessible as it is today. Google wasn’t invented yet and search engines of the day were slow and not readily available to everyone. So Julie’s primary source of information was people. She says in those early years, all she did was ask questions. And she didn’t stop until she got answers.
Second pregnancy
Over a year after the birth of her son, Julie still doesn’t have a name for the skin condition. But she has learned a lot about treating it. In addition, she is also pregnant with her second child. Unlike her first pregnancy, she now knows there’s a possibility this baby could also have the condition. Often just knowing this prevents couples from having more children. But Julie didn’t want fear determining what she could and couldn’t do. Instead, she prayed over her pregnancy and then trusted God with the outcome. Her belief is that God will always give us the wisdom and strength to do whatever HE puts on our plate. This means, if this baby also had the same condition, Julie would not be alone. God would be there every step of the way helping her face whatever challenges arise.