It’s been a busy couple of weeks. There have been lots of appointments and activities, and I’ve been busy running errands around town. I live in a rural community in south central Nebraska. It’s small enough that, no matter where I go, I run into someone I know.
I also have a very large family, so even if I don’t know someone, they will likely recognize me as wife to Jason or mother to one of my seven children: 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), so it’s also very common to be asked how they are doing when I see someone I haven’t seen in a while. It may seem like a simple question, but I find it difficult to answer.
“How are the boys doing?”
My answer is often overly simple but safe. I say they are OK and thank the person for asking. This way, I don’t have to share anything hard, something that might make my voice crack or my eyes leak.
It is an oversimplification, but it is true. They are OK. They haven’t been hospitalized. They breathe on their own. Their hearts are healthy. They still feed themselves. Considering everything that their disease will take from them, they have life.
The most honest answer would take too long and require an understanding of Duchenne, so I don’t say it.
The honest answer
However, if I did, it would sound like a list of things the boys used to do and abilities they once had. Max and Rowen can’t walk anymore, and Charlie will stop walking soon. Three power wheelchairs make our house seem as though it’s shrinking.
Max and Rowen can’t lift their arms anymore. We wash their hair for them because their heads are too far away to reach. At Mass last weekend, I had to lift Rowen’s arm into the holy water font for him.
Rowen will have a sleep study soon because we think he needs nighttime breathing support. When I get him out of bed in the morning, his pillowcase is wet with sweat, and he often has a headache. If our suspicions are right, he will need a machine hooked up to him to ensure he breathes well while he sleeps. This machine will be in the room he shares with Charlie, and I’m worried it will keep his brother up, who also needs enough sleep to manage fatigue and weakness caused by Duchenne.
The disease keeps doing what the disease always promised it would do to my sons. It is hard to watch them grow weaker year after year, but we keep finding ways to do it.
If I said all of this to a well-meaning acquaintance in the aisle of a grocery store, they wouldn’t know how to respond in a way that didn’t crush me. In my experience, when I am brutally honest about what Duchenne is doing, people look at me with pity.
“How are the boys doing?”
I give the simple answer most often because it’s fast and I can give it without feeling the weight of Duchenne. I can give it without crying.
Most often, I share in writing how the boys are doing. I share on social media. I write this column. It allows me time to find the right words to explain what is going on in the boys’ lives. People can comment, but no one looks at me with sad eyes.
Most importantly, sharing updates about my boys through writing allows me to convey the difficult parts, but also to remind people that even through all the loss and challenges that come with DMD, we have a good life. We have a big, loving family and enjoy our life together.
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 Today or its parent company, Bionews, and are intended to spark discussion about issues pertaining to muscular dystrophy.
The post I rarely answer honestly when asked, ‘How are the boys doing?’ appeared first on Muscular Dystrophy News.