The unbearable weight of grief that smoothes the jagged edges
Recent losses and worrying about my son have weighed heavily on me
I type my columns on Tuesdays, but I write them in my head in the days before. I consider what to write, how to begin, and the words to use to share my life experiences.
My family is fun, and my columns often reflect that, to show the lessons I’ve learned and the positivity I rely on to face our family’s challenges. My husband, Jason, and I have seven children: Lexi, 24; Max, 20; Chance, 18; Rowen, 17; Charlie, 15; Mary, 11; and Callie, 4. Max, Rowen, and Charlie live with Duchenne muscular dystrophy (DMD).
But this week, my column feels heavy, and I must share that. Ups and downs are normal. Life with a rare, fatal disease — whether as patient, caregiver, or family member — can be difficult. Some days, even weeks or seasons, are especially hard.
My children are fine, my sons with DMD are OK, and nothing has happened to us. But some families in our rural Nebraska community have faced sudden illness and loss. There have also been losses in our Duchenne community.
Bearing the weight of ‘what if’
Knowing the people suffering these losses reminds me that life is fragile and can change instantly. My mind has been stuck in a mode of “what if.”
Recently, the women in my community who have lost husbands have weighed heavily on my heart. I wonder, what if it were my husband? The possibility of such heartache scares me. Would it break me? Would I remain the mom and caregiver my children need? How would my kids cope? How would I handle it alone — and financially?
The thought of it is terrifying, and even if we had a strong plan prepared in case something happened to one of us (we don’t), I know it would be extremely difficult. My heart hurts for those who have endured the loss of a partner or spouse. I am shaken, and my husband is here.
The other painful what if, one that brings me to tears and raises my heart rate and robs me of my breath, is what if I lost my son?
A woman I follow on social media recently lost her son. She has since shared images of their close, loving relationship and faith. It has given her solace in her grief.
I’ve been envious of their close relationship, and I keep thinking about the arguments I had with my son Max last year. He was struggling in some college classes, and instead of “pushing through” (my words), he stopped going. It made me crazy, and I was not at my best, yelling at him and being closed off to his perspective.
We did work through it. I understand now that the classes were physically too demanding. As a former college athlete, I couldn’t fully relate. My frustration only made things harder for him, rather than helping him find a solution.
What if Max had died before we resolved our issues in class? He is 20, and men younger than him have passed away because of Duchenne. The thought makes me ill. I know I won’t repeat this mistake. Life is short, and I could never forgive myself if I lost my child while arguing over something so small.
In the end, it doesn’t matter if he fails a class. What matters is that my children are as healthy as possible today, despite the genetic killer in their bodies. It’s important to me that they know they are loved and safe. I need them to know happiness, and I don’t ever want to be the reason they aren’t.
I’m not sure I’ve conveyed how deeply these recent losses have affected me. They have been heavy on my heart, and, as I’ve allowed the weight of them to wash over me, it has softened me and smoothed the jagged edges, the ones that cause me to worry about the things that don’t matter. I am a different person than I was before.
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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