Sometimes I’m Not Successful as a DMD Caregiver

“We are called upon not to be successful, but to be faithful.” This quote, which has been passed down in many forms, is one of my favorites from Mother Teresa.

I’ve been thinking a lot about life with Duchenne muscular dystrophy (DMD). We’re going to our neuromuscular clinic this week, and I’ll be there in Denver, on the day this publishes. I’m not freaking out. Most likely, it hasn’t hit me yet. But I know we’ve let things slip over the past six months.

Having our baby, Callie, has been an adjustment. I know we haven’t been making the boys wear their ankle and foot orthotics regularly, and home stretching is not getting done as often as it should. In addition, we haven’t used the cough assist machine for daily therapy this summer.

Those are three essential tasks, and our neglecting them may show up in some of our results after attending our neuromuscular clinic. But there’s so much to do for our boys. And as they age while not being ambulatory and needing help with more and more, we’re busier.

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We shower, dress, and support them in the restroom. We help the boys stand up and transfer them into their chairs. We load and unload them from the van. We give their medications three times a day. That becomes hours of care each day, and when multiplied by care for a baby, our day is over. Honestly, I’m exhausted at the end of the day when we typically stretch and use cough assist therapy.

Before I was pregnant with Callie, I took supplements to help increase my energy levels, but I can’t retake them until I finish nursing her. So I must give myself some grace until I can use that extra energy.

I feel like my husband and I have stretched ourselves as far as we can for the time being. I feel guilty, but I know we’re doing as much as possible at this point.

However, I also know it won’t always be like this. Callie is growing and changing fast, and soon there will be no baby, only a toddler. Soon, I’ll take my supplements and have more to give. This period will be short.

I’m trying to follow Mother Teresa’s advice. I’m faithful to my boys and their care, but I’m human and must remind myself I won’t always succeed. But I want to be successful because success in their care makes them happier and can potentially add quality and years to their lives.

It’s not easy to be a parent of boys with DMD, but it may be one of the most rewarding experiences I’ve ever had. And I would take every hard, long, scary day on replay to have them even a minute longer.

I’m pushing it right now. I’m getting to a point where I could say I’m experiencing burnout. But I’m not called to burn out; I’m called to be faithful.

Ding. Ding. Ding. I feel like that’s my sign. Something needs to change. It’s time for me to stop nursing the baby; we can still meet her needs with formula. But I cannot stop caring for the boys at the highest level possible because there’s no formula to replace that.

I also realize and admit that I hadn’t given myself more than an hour or two of respite before the coronavirus rocked our world. I’m happy to share that I’ve made a down payment to save my spot for a DMD mom’s weekend in the fall.

It’s not something I was consciously seeking, but I saw a weekend for DMD moms in Vermont in the fall advertising. I wanted to participate. I’m not only exhausted and on the verge of caregiver burnout, but also a Hallmark fan and want to experience Vermont in September!

The fact that I need a Hallmark weekend is only another reminder that I’m human and will never get it perfect. But I hope it’s also a testament to my desire to do right by my boys.

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.