How Making Memories Has Benefited My Family
Columnist Betty Vertin hears her son reflect on activities he can no longer do
The days are long, but the years are short.
I’ve often heard that sentiment from parents whose children seem to grow up too fast. I’ve had several moments myself over the years of parenting my seven children.
I had one of those moments yesterday when my oldest son, Max, who has Duchenne muscular dystrophy (DMD), remembered how it felt to climb trees. It seemed like it happened only yesterday, not a decade ago.
His recollection came when I took two of my daughters and my three sons with DMD to watch their brother Chance play in a recent junior varsity football game. It was at a small high school not far from our hometown. There were no cutouts in the bleachers, so we chose to sit outside the fence, where picnic tables littered the grass under the trees.
It was a beautiful fall evening; the temperature was in the 60s, the breeze was blowing enough to keep the bugs away, and we were comfortable outside. We call that perfect football weather here in the Midwest. We had some popcorn from concessions, and it was nice to be together; sometimes our schedules prevent us from spending time together at weeknight activities.
It wasn’t long before the kids lost interest in the football game and pulled out their phones or started wandering around and exploring with other kids. Soon Max and my daughter Mary began to talk about the trees we were standing underneath.
They made Max remember when he and Chance would climb trees at a park we often frequented when they were younger. Mary wanted to climb a tree, so Max gave her pointers. Sitting in his wheelchair, he instructed her.
I ended up pulling Mary down from the tree, as she had tried to use the baby’s stroller to boost herself and it tipped over. There’s never a dull minute here! But we had a nice moment reminiscing.
When the boys were diagnosed with DMD, my husband, Jason, and I decided to do as much as possible to fill up their memory banks with all kinds of experiences.
When Max told Mary that he used to climb trees, I told him, “Mom and Dad worked hard to make sure you guys got to try everything possible when you were little.”
Max smiled and said, “Thank you, Mom. I’m glad you did.”
In the world of rare diseases, I always wonder if I’ve made the right decisions and if we’ve tried the right things. Because Max is facing rapid disease progression and loss of ability, I find it especially hard to trust that I’ve done everything right. So I’m constantly questioning if maybe we should’ve done this, or not tried that.
Because of this doubt, I must constantly remind myself that I’ve made the best decisions possible with the available information.
Hearing Max reflect on how he used to climb trees, seeing his smile and gratitude, and watching him instruct his sister on how to climb a tree made me feel like I did something right.
We home-schooled our kids for a year so that we’d have more flexibility to go and do and have all the experiences. We had professional photos taken of them playing on the swings so they could remember doing it. We drove to the ocean from our landlocked state so they could walk into the sea before they couldn’t walk anymore.
If I had to do it all over again, I’d do things the same way. And because the years seem to go by faster and faster as the boys get older, I’m thankful the years are flooded with memories.
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.
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Joanne Sipocz
I love your story and am so glad you are making memories with your children. We had a son with DMD also, he passed away at the age of 23. He fell on the playground once before he was couldn't walk any longer and he hit his head, He had a small cut and was bruised but he was ok. The school nurse wanted him to go home and he told me he wanted to stay at school, so I let him stay. The school wanted to keep him off the playground and we said no, that if he gets hurt we would take care of his injury just as we would for our other two boys who did not have DMD. They weren't too happy with us, but he had so much fun just like his brothers did. My opinion is to follow your gut feelings. My other two boys often talk about all the memories we made.