The comment comes in many forms: “I don’t know how you do it.” “You have your hands full!” “I can’t imagine what it would be like.”
It’s always in response to seeing my large family. I share seven children with my husband, Jason: Lexi, 24; Max, 20; Chance, 18; Rowen, 17; Charlie, 15; Mary, 11; and Callie, 4. Max, Rowen, and Charlie live with Duchenne muscular dystrophy (DMD).
It overwhelms people. I hear it most from the Duchenne community, from families who have only one child with DMD.
I understand. Having one child with Duchenne is challenging. They are imagining what it would be like to have three times that.
‘The view I love the most’
My family faces plenty of challenges as we raise and care for three sons with DMD. I am sure there are more challenges with multiple sons, but there is also triple the love.
When someone tells me my hands are full, I respond: “Yes, but my heart is full, too.”
It is my go-to response in passing, but recently, my sons’ social life came up in a conversation with a doctor on our neuromuscular team during their biannual checkup at the clinic in Denver. Max, Rowen, and Charlie do not have many friends.
My sons participate in various activities, including band, unified bowling, and choir. They have peers they can sit with and talk to at school and at activities, but no one close enough to hang out with. It’s not easy. I know they would like to have friends. They are surrounded by good kids at school, but those peers might be hesitant to ask how to hang out with my sons, who don’t have the same independence; they don’t drive, and wherever they go, they need accessibility. They must plan, figure out which portable ramps they’ll need, estimate when they might need to use the restroom, and have a plan for that as well.
We are fortunate enough to know three college students who have become like family over the years. When they are available, they will come over, borrow our van, and take the guys out to eat or to the movies. I am always so thankful. However, they are very busy with college and work; two of them go to college out of town, so it doesn’t happen often.
I don’t let it make me angry; instead, I turn my focus inward. I’m reminded of the song “My Front Porch Looking In,” which the singer calls “the view I love the most.” That’s how I feel about my family. My family is big, loving, and full of life. My house is full of people who come and go, all of whom care about Max, Rowen, and Charlie.
Their siblings, their siblings’ significant others and friends, neighbors, and caregivers are all invested in our sons and have given them a social life. Our family will only continue to grow as more of our children get married and start families. My sons have a full life and a rich and meaningful social life within their family, even if they are not close friends with their peers.
Our large family is busy, and life can be chaotic at times. However, the love is just as big, and the busyness keeps us active. Others may be overwhelmed by our large family and not understand how I do it, but I don’t know how I could possibly do without it.
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