Guest Voice: Caregiving isn’t easy, but it’s not a burden
Finding the beauty in life with limb-girdle muscular dystrophy
We had only been married a few months when my husband woke me in the middle of the night to help him reposition. Half-asleep and irritated, I got up and muttered in the darkness, “I don’t want a husband anymore.” I didn’t remember saying it until he told me the next morning.
Back then, we often talked about guilt — how Patrick, who lives with limb-girdle muscular dystrophy, felt like a burden. I assured him he wasn’t. But as the years passed, I witnessed the progression of the disease take more and more from him — and add more to my plate as his caregiver.
In 2014 and 2016, we welcomed sons. As the boys grew, so did the demands. Patrick relied on me more for daily tasks, and suddenly, I was caring for three people full time.
People asked, “How do you do it?” The answer: I didn’t do it alone. My mother-in-law lives right next door and has been my second set of eyes, hands, and heart. Her presence gave me breathing room, especially in those early years when patience sometimes wore thin, like when I was the only one packing the car for a road trip or I was deeply immersed in a project, only to be pulled away.
Counseling is a tool that has helped Vanessa Moeschen process trauma and be the caregiver her family needs. (Courtesy of Vanessa Moeschen)
Recognizing my growing frustration, Patrick gently suggested I speak with a therapist — someone neutral who made me feel safe to talk about anything. I hesitated. I’d grown up in the 1980s, when therapy still carried a stigma. But eventually, I went.
In therapy, I explored patterns in my thoughts, relationships, and reactions, especially those rooted in my complicated relationship with my own mother. Becoming a mother myself and a full-time caregiver stirred up unresolved trauma that counseling helped me process. Therapy became a space for healing — a way to care for myself so I could continue caring for my family with grace, not resentment.
Today, I can see the beauty that’s emerged from our life with muscular dystrophy. Our boys have developed incredible empathy and sensitivity to others. Patrick and I have found laughter in situations most couples never have to face. And I’ve learned the little things that make life easier, like going to bed a bit earlier to soften the blow of those middle-of-the-night wake-ups.
As Eleanor Roosevelt wrote, “Meeting the needs of others is not a real burden; it is what makes life worth living. It is probably the deepest satisfaction a woman has.”
I used to carry guilt, exhaustion, and grief. But now I carry peace, resilience, and gratitude. This is not the life I imagined, but it’s a life deeply lived.
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