Our son’s graduation from high school was beautifully exhausting

My oldest son, Max, 18, graduated from high school last Sunday. Graduation is a milestone for all who achieve it, but since Max lives with Duchenne muscular dystrophy (DMD), it felt like an even greater accomplishment. I was bursting with emotion, including joy, relief, happiness, and fear. It was overwhelming in the best way, and my eyes were moist most of the weekend.

Those few days celebrating Max were wonderful. We hosted a graduation party at our home the day before the ceremony. It was scheduled from 2-5 p.m. that afternoon, but people continued to show up for hours afterward. It was nearly 10 p.m. when we said goodbye to the last visitors.

Max’s great aunts and uncles traveled for hours to surprise him. Fellow graduates came over, and a few even jumped — fully clothed — into our above-ground pool. The entire day was marked with laughter and smiles.

We were tired on graduation day, but excitement filled us with energy once we started preparing for the ceremony. It turned out beautifully, and when Max’s name was called, many cheered. My favorite part was that the school superintendent made sure he was the one who gave Max his diploma, along with a fist bump, telling Max how much he’d enjoyed watching him on stage the past four years.

After the ceremony, we somehow found the energy to attend a couple of parties for other graduates in Max’s class and then go to a late Mass. After we got home, the family — including Max’s two brothers with DMD and our other children — practically collapsed into bed.

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Several days later, I still feel the weekend’s effects. My hip and back are sore, and I’m tired.

My husband and I did all the work for the party ourselves. We cleaned the garage and the house from top to bottom, cooked most of the food, and decorated. I would’ve loved to hire someone to do it, but let’s face it: Duchenne is expensive. We did all of this while focusing on our kids’ needs. It was a week of intense physical work, but the emotions were equally exhausting.

Max was my second child to graduate from high school, but I must’ve forgotten how tired I was after my oldest daughter, Lexi, graduated five years ago. I mentioned to a friend at church how exhausted I felt. Her response struck me deeply: “In five years,” she said, “though your life has gotten harder as the boys have progressed, you do so much more.”

That touched so many notes within my heart. This friend has watched our journey with DMD from a distance. She’s seen our sons change as the disease progressed and understood that those changes altered the way we live as parents. She’s watched us transition into caregivers. That alone — being seen — affected me deeply.

Further, hearing it from someone else permitted me to say yes, this life is hard. I know I don’t need permission to feel that way, but I sometimes get caught up in being a mom to seven children and a DMD caregiver to three, and I forget my life is drastically different from most. My daily life is so busy that I often have to give myself permission to sit down and drink water. There isn’t time to permit myself to say, “This is hard.”

Amid the celebration, I certainly didn’t let the difficulties diminish my joy. Still, having someone else recognize this gave me a sense of relief.

None of our challenges take away from life’s beauty. Rather, they enhance it. Celebrating Max this weekend demonstrated how we can recognize and appreciate that inherent beauty.

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.