Our son Jonah is 11 years old now and just began the sixth grade. It blows my mind to think that it has been 11 years since our journey with epidermolysis bullosa began.
In some ways, it feels like it’s been much longer, and in many ways, it was just yesterday. After being told there was only a 15% chance he’d live, we never imagined the day he’d be a middle schooler (or the homework angst that comes with that).
After the first year and a half of Jonah’s life, running on adrenaline and a whole lot of prayer, I hit a wall as a caregiver. I’ve struggled on and off my whole life with some mild anxiety and depression, but after losing one child, living more than a year in survival mode with Jonah, and dealing with so many broken dreams, I began to really struggle. I was exhausted, mad, and grieving.
I was angry about the hours we spent doing wound care, angry that we couldn’t go outside in the heat, angry that he wouldn’t eat and would gag and throw up at even the sight of food, angry that we couldn’t go out to a restaurant (forget a vacation!), angry that my husband, Matt, and I couldn’t ever get away.
Then I’d be angry at myself for being so selfish when Jonah was enduring such pain every day. He was alive. He was here. My prayers had been answered. But I was unhappy. What was wrong with me? (Shame is a beast.)
It was this very strange dichotomy between rejoicing that he had beaten the odds and lived and the realization that this was our forever reality.
“I’m so glad he lived. But how do we keep up this pace forever? How do we do this life for the long term?” I wondered.
I became overwhelmed with fear, anxiety, and the ever-present, terrible power of the “what if.” What if he could never eat? What if he always had to wear the full body bandages? What if people bullied him and made fun of him? What if he had a hard time making friends? What if he couldn’t go to school? What if I wasn’t enough to give him a happy life?
On a very wise friend’s advice, I went to see my doctor about the steps I needed to take to get in a better mental place.
“Patrice,” she said, “if you had strep throat, you wouldn’t just let it go and not get treatment. You wouldn’t decline medicine that was available to help you. This is no different. Go to the doctor!”
Good friends tell you hard truths, even when you’re being stubborn and hardheaded. Hopefully, they also give you a cookie or a glass of wine to make it easier to hear. It was a huge step for me, and I’m so thankful for the day I made the decision to get help.
In addition to medical help, God gave me spiritual help, too. I began to think about the Israelites wandering through the desert for 40 years and all their fears of the “what if.” God, of course, provided all they needed, but still they worried and complained and lived in fear.
When they were without food, he provided manna that would fall from the sky every night. They were instructed to only collect what they needed for that day. If they hoarded too much, for fear it wouldn’t fall the next night, it would rot and become filled with maggots. (Sorry for that imagery.) But the manna fell every day. They always had enough.
And so, I started trying to live that way. Instead of hoarding troubles and fears for tomorrow, I tried to live on God’s manna just for today. I treasured the smiles, the laughter, and the small victories. I clapped and squealed when he ate a small container of yogurt. I thanked God for the successful G-tube he had placed at 14 months. I rejoiced when he finally walked at 22 months.
I treasured his life for who he was in that moment and stopped worrying about what he may or may not be able to do or be in the future. I didn’t dwell on an unknown prognosis. Slowly, I learned to treasure the right now.
Worrying about the future seemed to only produce rot and maggots. And there was too much beautiful life to be lived in this very moment. There was so much manna for today right in front of us. Some days, I lose perspective. Of course. Especially when middle school math homework is involved.
But when I start slipping and feel the power of the “what if” begin to overtake me, I repeat to myself, “Manna for today. Manna for today. Manna for today,” and look for God’s amazing right-now provision. It’s always there.
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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