When my son Jonah was born with epidermolysis bullosa, saying it was a shock is a gross understatement. Unknowingly, my husband, Matt, and I each carried mutated genes that, when joined together, made for a monster disease that ravaged our sweet baby’s tender body.
Our first instinct after the initial shock wore off was that we’d do whatever it took — whatever — to keep him alive. God had given him to us breathing, and we intended to keep it that way. If we could make something happen by the sheer force of our will, this would have been it.
But it ended up being so much more than just us. People started praying all over the country, and even the world. Our blog received comments from all over the U.S, as well as England, China, Australia, and the United Arab Emirates. Somehow, Jonah’s story had gotten out, and it was like a collective spiritual battle to sustain him. And it worked.
After 32 days in the neonatal intensive care unit, Jonah came home. Given his type of junctional epidermolysis bullosa, doctors told us he had only a 15% chance of surviving. It likely would be months before he could leave the hospital, if at all. After an MRSA infection scare, we told the doctors they needed to figure out how to send us home.
We knew Jonah wouldn’t heal there. He wasn’t going to heal at all. The only treatment for EB is wound care, bandage changes, and good nutrition. We could do that at home. And we knew that any infection he picked up in the hospital would be far worse than anything he’d pick up at our house.
There was nothing the doctors were doing for him there that we couldn’t do at home. For his own safety, we needed out. And because our doctors were so awesome and knew the reality of EB, they agreed. Within a week, we were heading out the door.
But when we got home, reality hit. Jonah, like any newborn, was waking up at night, and our sleep was limited. Additionally, we were doing wound care during the day, struggling to get him to eat, and figuring out safe ways for him to move, sleep, and exist. We also had to find clothes that wouldn’t rub blisters on his fragile body, figure out insurance and bandage supplies, take him to doctors’ appointments, and change the dressing every day for three hours — all while Matt worked full time.
Of course, Jonah was worth every moment, but it was beyond difficult. Dreams of peaceful feedings, sweet kitchen-sink baths, and precious newborn days were gone. This was a full-on battle to keep him alive. And it was exhausting.
But the beauty of the hardest of times is that you realize you are not alone. We were surrounded by the love and support of our family members, friends, and members of our church family. So much of that time is a fog, but there are things that stand out, even today.
Friends from our Sunday school class fed us dinner three or four times a week from the first of March through the end of June. My brother and sister-in-law arranged and paid for our house to be cleaned every other week for several months. My mother-in-law stayed with us Thursday nights through Monday mornings, just to give us some relief. Our church family renovated our entire unfinished basement, including building storage cabinets for bandages and medical supplies and a dressing change counter with a sink.
When we decided it would be best for Jonah to have his bandage changes during the day instead of at night, a small army of people signed up to help me get it done while Matt was at work. That way, when he arrived in the evenings, we could have our version of a “normal” life.
For almost two years, a rotation of 10 people, including family members, friends from church, the mothers of two high school friends, and even one of his NICU nurses came on a certain day every other week to help distract and play with Jonah while I did his bandages. That was some kind of incredible love.
If you are going through something similar, if you are walking through the valley, I hope you will not be afraid to ask for help. I hope you will find your own army. It can be five people or 25 people. The size doesn’t really matter. But the heart does.
You need to know you are not alone, and it has been my experience that when you ask (and even when you don’t), God has people waiting in the wings to be the answer to your prayers.
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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