It took a scare with my child with DMD to see my husband’s support

I was mad at my husband, Jason, for spending the night in the recliner. He’d been there because he’d been snoring loudly enough at night that I hadn’t been sleeping well, and he wanted to ensure I got a good night’s sleep. But I was in no mood to recognize his goodness.

He’s always the first to wake up and prepare our kids for school, including our three sons with Duchenne muscular dystrophy (DMD): Max, 17, Rowen, 14, and Charlie, 12. I got up when I heard the commotion outside the bedroom door, but I wanted him to know I was mad. I gave him the silent treatment, avoided eye contact, and didn’t hug him good morning as usual.

I got my coffee and left the kitchen to sit on the couch with our 20-month-old daughter, Callie. He knew I was mad, but also knew me well enough to let it go until I stopped acting childish.

By then, Jason had gotten Rowen out of the bathroom and served him breakfast. Rowen had been his usual self all morning. But suddenly he yelled, “I don’t feel good!”

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A frightening moment

Their backs were to me, but I saw Jason look down at Rowen, and his reaction told me something was wrong. Rowen said he needed to get out of his power chair, that he was lightheaded and his vision was blurry. Rowen’s face was red, Jason told me later. Then we saw him begin to vomit.

We quickly checked his vitals. Something was happening. His blood pressure had dropped dangerously low, and his heart rate was elevated.

Jason called our doctor and was told we could bring him there in about 45 minutes. He took the rest of the kids to school while I prepared for the appointment. Rowen began vomiting so much he carried an emesis bag to the doctor’s office.

After the doctor visit, we went to the hospital for an IV and a CT scan. Rowen received a stress dose of corticosteroids and anti-nausea medications; his CT scan was clear. Turns out he had a virus and was dehydrated. With the medications and fluids, he began feeling better. We were home that night and he was back to normal after extra rest.

I’m so thankful Rowen was OK. At first, I became scared that whatever was happening would result in me losing him. I sat with him and held his hand, but I was in shock. Things had happened so fast. I wasn’t myself for the rest of the day.

My husband holds all the pieces together

My husband, meanwhile, was amazing. He worked to make sure our local doctor was communicating with our neuromuscular team. I’m the one who typically handles that, but this time I couldn’t seem to get it together. Jason took over. He communicated with both medical teams, made sure someone was home with our youngest, picked up the kids from school, remembered our older son had a rehearsal, and attended parent-teacher conferences.

I wasn’t in a mental place to do those tasks. I needed to be with Rowen. I’d been so scared of losing him that my only comfort was being near him.

I never had to communicate any of that to Jason. He just knew it. He knows me better than anyone. He’s so patient with me and is such a good caregiver.

This DMD journey is excruciating at times, and when I got caught in one of those moments, Jason picked up all the pieces. We experienced fear like we may have never known before, but our love for Rowen was in overdrive. We wanted to protect and care for him. Jason’s love was humbling because the man I woke up mad at saved me from crumbling that day, all while managing the chaos that comes with our party of nine.

Marriage isn’t listed as a resource when dealing with Duchenne, but mine is a significant support for me. I couldn’t do this alone, and I’m glad I have my husband to shoulder it with me.

Note: Muscular Dystrophy News 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 another 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 Muscular Dystrophy News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to muscular dystrophy.