Learning to Balance Caregiving and a New Baby

Living with a rare disease like Duchenne muscular dystrophy is more than doctors’ appointments, medicines, and wheelchairs. It affects every aspect of my family’s life.

When I started writing this column, I was afraid I’d have trouble finding something to write about every week, but was encouraged to write about our life, not necessarily specific topics. So, I brainstormed by considering how Duchenne affected our lives this week.

I thought about Chance, my son without Duchenne, whose high school basketball games are coming up. We’ve never been to these specific gyms, so I don’t know if the bleachers have cutouts. If they do, will we need to arrive early to get one?

I thought about how we go to my 13-year-old son Rowen’s school twice a day to help him use the bathroom. He has a paraprofessional and an individualized education program, but he refuses to let anyone besides Mom or Dad help him. So, we plan our days around those two trips to his school.

I thought about the accessible school bus with the lift that has been in the shop awaiting parts for months. For every middle school football and basketball game this year, either my husband or I have had to pick up Rowen, the team manager, in our van and follow the regular bus to the game so that he can participate.

I thought about how my husband, Jason, is traveling for work next week. Our three sons with Duchenne go to three different schools. It’s nearly impossible to get to all three schools on time in the morning. But we can’t ask for help because they all take a chair to school, and we don’t know anyone else with an accessible vehicle.

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But today, I want to focus on how Duchenne affects our family as we adjust to having a newborn in the house again. We brought our baby girl, Callie, home from the hospital almost four weeks ago. I had prepared for all of the typical newborn things, such as sleepless nights, diaper changing, the extra time a car seat takes, and missing a few of the kids’ extracurricular activities as we settle into being a family of nine.

However, I didn’t fully realize the impact a new baby would have on the care we give our sons with Duchenne. It’s not the first time we’ve brought a baby home to siblings. We’ve helped our younger kids adjust to a new baby before, and were ready to do that with Mary, our youngest daughter before the baby. But this is the first time we’ve brought a baby home to a nonambulatory son.

Our children are head over heels in love with their new sister, but love doesn’t come without bumps.

Before we brought Callie home, Rowen, our nonambulatory son, needed us the most, and his care was the priority. He was used to being the first to receive help. Rowen also has autism spectrum disorder and can struggle with change.

Now that Callie is here, she needs us more than Rowen does. It’s been an adjustment for him to wait until we care for the baby. Meals have been served late, he’s had to wait to get out of his chair until the baby’s done feeding, and he’s had to adjust to other minor changes. He’s been stressed and impatient, which has made him tired. He got into a bit of trouble at school, too. Rowen seems to prefer and be happiest when our world revolves around him, and sharing that with a new sibling has been challenging.

I feel a little guilty because, as a mom, I want to meet all of the kids’ needs all the time. I want to be there for Rowen to make up for everything the disease takes from him, to make life easier for him. But this is real life. Mom and Dad may not always be able to be everything for him.

We hope to encourage independence as he gets older, and want him to learn to accept help from others. It’s been good for him to have this experience in those ways. He has to learn to be flexible and not always in control. I hope that serves him well in the future.

Life with Duchenne is just that: life. Duchenne touches every part of it, and we are constantly learning how to navigate it, from school drop-off to a new baby.

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.