Making Friends, Having Friends With Duchenne MD

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by Betty Vertin |

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On a Facebook page that documents our family’s journey with Duchenne muscular dystrophy, I recently posted about how invitations to birthday parties and friends’ houses are not typical for my three boys with Duchenne, especially with them using chairs full time.

However, the post celebrated the fact that my son, Rowen, who uses a wheelchair, had been invited to a friend’s house for a party! So naturally, my husband, Jason, and I both cried happy tears.

The invitation made me think about the obstacles to having friendships with Duchenne. As my sons’ diseases have progressed and they have lost their ability to be independent, their childhood friendships have changed. It takes a special person to be able to maintain a friendship with someone who has limited mobility, and, in my experience, such a friend is hard to find. My oldest, Max, has one. One is better than none, and I hope each of my younger boys will have at least that many. But in comparison to their peers, one is a lonely number.

As a parent, I can’t make anyone invite my sons over. The older the boys get, the more they realize they are being left out. Me forcing their involvement in social situations would make it awkward and uncomfortable for them. It needs to be natural, and I can’t just conjure that up.

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So my boys stay involved in extracurricular activities that give them friends they can talk to at school or see outside of school hours. I’ve watched them learn to accept that for what it is as they get older.

Family as friends

But having a large family fills up that lonely space, and I’m thankful for that. And it’s not just a big family, but one with more than one child living with Duchenne. I’m grateful that I have three sons with Duchenne because it allows them each to know someone like them, someone who walks like them with lordosis, who takes daily corticosteroids and lives with the side effects, such as a small stature. Someone who needs a power wheelchair and understands that their days of walking are numbered, who goes to pool therapy and the clinic every six months. They know someone like them and they experience that life together.

And these boys have siblings who do not have Duchenne. Their friends come over to our house and interact with my sons with Duchenne and get to see them as Lexi’s brother or Chance’s brother. These friends turn into friends of my boys with Duchenne.

It makes me thankful for so many children. Siblings may not always be best friends, and my house is far from argument-free. The siblings bicker, one-up each other, and refuse to share. But they belong together, and they share memories, holidays, weekends, and parents. They have each other to talk to, to walk into school with, and to ask for help.

They are each other’s friends.

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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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