Couch shopping awakened me to a focus on my children with DMD
With 7 kids, sometimes I get fixated on the needs of the 3 with this disease
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I think about things deeply, rolling ideas around in my head until they make sense. My creative side, the writer, likes to wonder in this way. And as an introvert who naturally tends to keep everything to myself, writing is often the way I can express ideas and feelings after they’ve been processed.
Reflecting on life this way can lead to profound realizations. For instance, a new couch in our living room recently made me aware that I’m inclined to prioritize the needs of my three sons with Duchenne muscular dystrophy (DMD) — Max, 19, Rowen, 15, and Charlie, 13 — over those of the rest of my family, including my husband, Jason, and our four other children: Lexi, 23, Chance, 17, Mary, 10, and Callie, 2.
Finding the right couch to fit my family’s needs has been an ordeal, especially as Max and Rowen have transitioned into full-time users of power wheelchairs over the past couple of years.
As a family of nine, we need a lot of seating. Our preference has always been a sectional because it offers the most seats and fits better in our living room than any other furniture combination.
We loved our sectional couch for years, but it started to fall apart. Further, the sectional’s right side was between the dining and living rooms, interrupting the flow of foot and wheelchair traffic in our ranch-style home.
When the boys could still walk, there wasn’t a problem because they could get through the narrower pathway. But once they gained their wheelchairs and needed to pass into the dining room, that passage felt crowded, and the boys’ power chairs often blocked each other. We needed new living room furniture.
Choosing a couch for a family of 9
When Jason and I went shopping for it, I intended to find a couch that would be perfect for Rowen. Even after he lost ambulation, he wanted to get out of his wheelchair toward evening and sit on the couch. Rowen still spends the end of every day on the couch, and I didn’t want that to change.
We decided not to purchase a new sectional because we couldn’t find one that would keep the living and dining rooms open for wheelchair passage. I also looked for a couch high enough for the Hoyer lift to fit underneath and wanted to replace the reclining feature of our old sectional because Rowen liked his legs out in front of him.
I bought an oversized couch so Rowen could sit on it with his legs stretched out. We gave up a lot of extra seating, but we thought we could fit because the couch was oversized.
But the sofa was all wrong for us, except Rowen. It was too deep, and you couldn’t sit on it without pillows behind your back or with your feet on the couch. It was too tall for Charlie, and he always had to ask for help to get off of it. We never fit extra people on it. And even with its extra height, the Hoyer lift didn’t fit correctly.
No one liked the couch except Rowen. In fact, sitting on it was starting to hurt my hips, and my husband never sat on it. We weren’t watching as many family movies because we needed more seating for everyone to be together in the living room during the holidays. The couch wasn’t cutting it.
So I started looking for a new one. I found it at a bargain price on a local buy-sell-and-trade site. It was a sectional, and it sat in the right direction to keep our living room travel space open. Plus, it reclines. Rowen loves it, and so does the rest of the family. We all fit again!
I realized that I only considered what would make Rowen happy and comfortable, and I succeeded. But I didn’t think of another person when I bought that couch. I became aware that I do this prioritizing often.
I worry about how DMD affects the other siblings and my marriage, and blaming DMD came easy. I’m not to blame as well, but realize that I have an active role in how much DMD does or doesn’t affect my husband and entire family.
I’m glad I pondered our journey to a new couch. It helped me understand an unconscious inclination to focus more on the needs of my kids with Duchenne than the rest of my family.
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.
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