Like many teenage girls, when I was younger I imagined what my future would look like. I pictured a wedding with a loving husband, a house with a white picket fence, and at least two kids.
These kids had 10 fingers and 10 toes. They were healthy, strong, and of course, perfectly behaved. (I would never let my kids get away with that — insert eye roll and judgmental glare toward an exhausted mom somewhere in public.)
I envisioned rainbows and sunshine. I never imagined that heartache, death, and a painful life-altering disease awaited on the other side of my naïveté.
Fast-forward 10 years or so. I had experienced the beautiful wedding and had an awesome husband. We owned a home (though the picket fence would come later) and had a cat and a dog. It was all going as planned. Until it wasn’t.
After a year and a half of trying for a baby, I finally got pregnant. Then, eight and half months into an easy and uneventful pregnancy, our first son, Gabriel Matthew, was stillborn at 37 weeks.
Doctors gave no reason. “Just one of those things,” they had said. “Nothing you could have done.”
My heart shattered.
Fast-forward another 10 months. I was pregnant again and on my knees in prayer the night before I was to be induced at 37 weeks. “Let him live, Lord,” I begged. “Let this one live.”
Jonah was born the next day at 3:50 p.m. He came out raw and blistered, looking like he’d been pulled out of a fire. I’ve never seen skin so raw. The memory of his hands still sends chills up my arms.
We soon found out it was epidermolysis bullosa (EB), “the worst disease you’ve never heard of.” We then found out that EB was likely the cause of Gabriel’s death as well.
“Just one of those things” now had a name, a prognosis, and a lifelong sentence of chronic pain, and it signaled the end of having any more biological children. There would be no “normal” anymore.
My heart splintered again. I collected up the pieces of my shattered dreams and stuffed them somewhere deep down. “Screw your dreams and your disappointments,” I said to myself. “Your only focus is keeping this baby alive.”
At first, I shoved my feelings deep and deflected all of my pain. I poured myself into Jonah’s care. I didn’t have time to focus on the brokenness that would soon threaten to suffocate me.
The sorrow eventually caught up with me, as it is prone to do, and I had to take stock of my life — where we were, how we would survive long-term, and what our hopes for the future were. I had to get the help I needed to cope, but I also had to reevaluate my dreams. Somehow, I had to pick up all of those shards I had stuffed down deep and glue them into something new.
And so, I made a decision. I would go forward. I would let those old dreams go, and choose thriving over surviving. I would trust God to build new dreams for me, and find peace in what was meant to be mine.
My husband and I decided we wanted another child, and down the road, we adopted our sweet son Gideon through foster care. When Jonah was 5, our dream was for him to go to school with peers, rather than keeping him in a bubble with an in-home education. (Also, let’s be real: I would have been horrible at home schooling.)
Public school was not an option for him, so with the generous support of family members, we enrolled him in a small, wonderful private school where he has thrived. When he was in third grade, I went to work part-time, and two years ago, I made the leap back to a full-time job — something I hadn’t done since before Gabe’s death.
Now, my new dreams include getting up at ungodly hours to watch the boys play baseball. (Yes, Jonah, too, as he begins a new adventure in April.) They include having a garden, learning to can pickles, and buying more indoor plants than I can possibly keep alive.
Mostly, my new dream, although it includes plenty of pain, the difficulty of chronic illness, the complication of adoption, a life that’s not “normal,” and an uncertain future, is to love the mess out of my people. I’m so thankful for the chance to simply love them and to be loved by them.
They are the best dream. (And also, the pickles. Don’t forget about the pickles.)
Note: Epidermolysis Bullosa Today 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 Today or its parent company, BioNews, and are intended to spark discussion about issues pertaining to epidermolysis bullosa.
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