I now appreciate it when someone says, ‘You have your hands full’

“You have your hands full.”

I have heard that said hundreds of times over the past 25 years, and I hated hearing it. I always had a response ready: “Sure, but my heart is fuller,” I would say.

However, I’m currently in a season of life and caregiving where I appreciate that someone notices that my hands are full. That simple statement can nearly bring me to tears because most days, I am overwhelmed and rarely have enough hours to get everything done.

I have seven children with my husband, Jason: Lexi, 25; Max, 20; Chance, 19; Rowen, 17; Charlie, 15; Mary, 11; and Callie, 4. Max, Rowen, and Charlie have Duchenne muscular dystrophy (DMD). My sons are cared for, but laundry is never done, I am frequently rescheduling appointments, and the sink is always full of dishes when I fall asleep.

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A caregiver is not a superhero

Caregiving can be beautiful, and I have shared much of that over the years, but sometimes it is a real grind, and I do not want to shy away from that side either.

Caregivers are not superheroes. We are humans who get tired and burnt out. That does not mean we are going to quit or give up. It just means caring is a high-demand job, and even when we do it with love, there are times when it is hard.

Last Friday, Rowen broke his leg. He had just gotten home from a week at Muscular Dystrophy Association (MDA) Summer Camp and wanted to sit on the couch to watch his phone and decompress after a long drive. My husband lifted him onto the couch like he had a hundred times before, but Rowen sat on his leg, causing his femur to break.

Rowen is in extreme pain, and transfers hurt him so much that he must be coaxed to use the restroom and get out of bed. We have a brace and are using pain medications, but we don’t have a good new system down yet. I struggled the first morning I had to get Rowen ready on my own and was in tears before the end of it. I apologized to him for not being able to do it well on my own.

While I was struggling to get Rowen out of bed, Max kept asking when I was going to make him breakfast. I was ready to lose my mind because he knew what I was doing. He has broken his femur before, too, and knows the struggle, so I was frustrated that he could not put his needs aside for 15 minutes while I helped his brother.

I was in a hurry because I needed to pick up Callie from dance camp and take Mary to hitting lessons. I made Max breakfast, but not with a smile. Through all of this, Charlie was in the shower, yelling that he was ready to get out, but he had to wait until I had Rowen safely in his power wheelchair.

Everything got done, but I was rushing. I feel like I am always rushing. Too many people depend on me for needs that outnumber the hours in my day.

I have noticed that if my sons see me, they need me. I can leave them with a caregiver for two to three hours, and they do not ask the caregiver for help. However, once I get home, all three ask me for everything they should have asked of the caregiver. I am reminded of baby birds all chirping for food at the same time as soon as mom returns to the nest.

There are times when caregiving has felt like second nature for me. It was peaceful, and I was happy to support my children. I am learning, though, that caregiving is not always so peaceful. It can be demanding and stressful.

I will always be there and be what my sons need me to be, but I am not afraid to admit that sometimes it is hard.

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.