As a Caregiver, Having Extra Help at Home Will Benefit My Entire Family

We had a snowstorm last week that left us with 10 inches of snow after just a few hours. It still looks like a winter wonderland outside.

My children had two days off of school as a result. We played in the snow and made cinnamon rolls and ice cream with freshly fallen flakes. The days held that winter magic I’ve only ever experienced when it snows.

My 8-year-old daughter, Mary, wanted to go sledding at Brickyard, a popular park here in Hastings, Nebraska, that offers big hills. She asked repeatedly, but I had to tell her no because her three brothers with Duchenne muscular dystrophy (DMD) wouldn’t be able to participate.

While they can go sledding, I’d need an entire college football offensive line or a four-wheeler to get the boys back up the hill. I wish sledding were more accessible than that, but it’s not. I struggle to do these kinds of activities with my nondisabled children because I don’t want my sons with DMD to feel left out.

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A flood plain with small slopes is visible from our driveway, so I walked Mary over there, and she went down the tiny hill a couple times. But because I was holding her baby sister and my arms felt like they might fall off, it was short-lived.

She continued pleading for the park throughout the week, telling me her friends and cousins had all gone.

I wanted to take her and felt guilty for saying no. But this made me realize that because she is as self-sufficient as an 8-year-old can be, I’ve often put off helping her or enjoying an activity with her until I’ve finished helping her brothers. They need me more. And I hate to admit that sometimes I’m so tired when I’m done caregiving that she doesn’t get my best efforts. So, I wonder, does it seem to Mary like she’s not as important?

The thought made me uneasy. I don’t like the idea that I may not love Mary the way she needs me to because I put her brothers first every time. As I shared a few weeks ago, I grew up in foster homes and often wasn’t loved the way I needed to be. I’ve always wanted to be a better mom than that. But I’m not perfect, and I don’t always juggle everything well.

It’s hard to admit that, but I must remind myself that humans are messy and imperfect. All I can do is keep trying and do my best.

Recently, my husband and I arranged for me to have more help in the home. Today is a start. I’m writing this column at the library without a 12-month-old banging on my keyboard! The extra help will allow me time to write more, keep up on housework, make sure we’re getting the boys’ home stretching regimen done, and have time for all my kids — and, oh yeah, time for myself, too. If I’m not filling my own cup, it’s hard to fill anyone else’s.

Our new helper has barely started, but just knowing about them has given me some renewed energy. I want to carve out more time for Mary. She doesn’t have school today, and we still have snow on the ground, so I’ve arranged to take her sledding, just the two of us. It makes me happy to be able to do this, and I know that with the extra help, there will be much more time for those kinds of activities.

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.