When Smiles, Celebration, and Duchenne Coexist in Harmony

Celebrate? Yes, we do.

There was a time when I didn’t think celebrating and Duchenne muscular dystrophy could coexist. I thought a life touched by Duchenne would be voided of happiness, joy, and celebration. I was very wrong.

I have since learned that life with Duchenne just makes the hard days harder and the good days so much sweeter!

My family and I had one of those sweet days last Sunday, when we spent a beautiful day celebrating my son Charlie’s confirmation. It was such a good day that I wore a permanent smile across my face. I still can’t stop smiling about it today.

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The best part was how much the day meant to Charlie, our youngest son with Duchenne. At 11, he is our fifth child to be confirmed. None of our other kids were even close to being as excited as Charlie was to receive the sacrament from the Catholic Church.

Charlie spent a month planning for his special day. He wanted a tailor-made suit, so we started there. He went into a local men’s clothing store and picked out what he wanted, and returned twice for fittings. He loved looking at himself in the shop’s trifold mirrors, and picking out his tie, a shirt, and every other little thing required to have the suit made.

I shared with you previously that I am not a party planner. But Charlie may have a future in it. First, he organized a meal of prime rib and cheesy potatoes, and then went with his dad to pick it up from the market.

He also told me where to order the marble cake with white frosting that he wanted, to be decorated with a golden cross on top. He invited everyone he had wanted to come, and even told me what presents to buy him.

I wear a necklace with a cross and a miraculous medal on it. Charlie wanted a boy’s version of the same necklace. I ordered it months ago, and every time I saw its box sitting on the top shelf of my closet, my heart felt a little jolt of pleasure. He’s worn it since he opened it.

We had a full house that day, and his joy was contagious — and not just with me. All of my children, along with my husband, Charlie’s grandmother, and his confirmation sponsor shared in the joy. Outside, it was a sunny and warm day, but inside, it was even more beautiful. Wherever you looked there were smiles. Laughter filled our home and spilled out of the windows.

Charlie won the day. He even let me take countless photos — in the house, on the porch, in the backyard, and at the church. He smiled and laughed and never rolled his eyes or told me to stop with all of the pictures. I must have taken a hundred or more. The photos captured that day’s happiness, and I will look back on them for years to come.

Columnist Betty Vertin and her son Charlie are all smiles after his Catholic confirmation on April 3. (Courtesy of Betty Vertin)

On days of celebration, or when one of my three sons with Duchenne reaches a milestone or finds a way to do something new, I like to say, “Not today, Duchenne, not today.” Sunday was one of those days.

We are blessed to have so many reasons to celebrate. While Sunday was Charlie’s confirmation, on Friday, we’ll celebrate the opening night of our 16-year-old son Max’s spring musical at school.

Life can be full of celebration. I think Duchenne has given us the license and the courage to celebrate even the little things in a big, big way.

Note: Muscular Dystrophy News 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.