The ripple effects of growing up with a chronically ill sibling

“Two roads diverged in a wood, and I— / I took the one less traveled by, / And that has made all the difference.” — “The Road Not Taken” by Robert Frost

Some roads we choose, while others we are forced to walk. Our journeys are marked by big and small events that often change the trajectory of our lives.

My husband and I instinctively knew a Lambert-Eaton myasthenic syndrome (LEMS) diagnosis would catastrophically change the trajectory of our daughter’s life. And it did.

Grace was just 15 years old when she started showing symptoms of LEMS. As most kids her age were gaining independence, she lost all of hers. She went from playing sports to needing help sitting up in bed. We had to help bathe her, wash her hair, and help her use the bathroom.

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A life-changing diagnosis

But we were unprepared for how the diagnosis would affect our other children, specifically our youngest daughter. Bethany was 12 when her older sister was diagnosed with LEMS. We had just moved from our home in Connecticut to an area in Florida that had recently been devastated by a Category 5 hurricane. Many people there were displaced and still putting their lives back together, while ours had seemingly fallen apart. Community was hard to come by.

This was felt deepest by Bethany, our most social and outgoing child. In Connecticut, Bethany had a plethora of meaningful friendships and hobbies in her life. She was brave and daring and always up for adventure. Her life was filled with activities like hiking, trapeze, and gymnastics. She would be the first to jump off a cliff into the dark waters below or kayak down the Mystic River.

Suddenly, her life came to a screeching halt. Not only was she removed from her closest friendships, but now she also had to contend with the obvious health issues Grace was facing. Life became scary, dangerous, and lonely.

Five years later, I think we’re still coming to terms with how much that period of time affected Bethany. She is currently a senior in high school and in the process of writing college and scholarship essays. When I read some of her reflections on that time in our family’s life, I begin to realize how Grace’s illness has shaped even her.

She eloquently conveys on paper what that period of time felt like for her and the deep impact it had on her life. It has shaped who she is today. Bethany is kind and gentle, empathetic and in tune with others’ needs. She cares for people with dignity and insight.

Help for siblings is available

Yet, I wish I had known about the resources available to help not only Grace, but also her siblings navigate the emotional toll of chronic illness.

Back then, I didn’t know there are child life specialists who can explain the diagnosis to siblings and help them process how it might affect the entire family.

There also are organizations that focus on helping the siblings of children with disabilities, such as the Sibling Support Project. The Muscular Dystrophy Association offers practical strategies for supporting the siblings of children living with neuromuscular diseases. The resources are abundant.

Bethany is who she is today partly because of Grace’s LEMS diagnosis. She learned from a young age how to face adversity with courage and has a strong sense of faith and family that was deepened by the uncertainty of her sister’s illness.

I never would’ve chosen this path for any of us, but I have seen the beauty of the road less traveled in both my daughters’ lives.

Have you seen beauty come from the hard circumstances of LEMS? Please share in the comments below.

Note: Lambert-Eaton 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 other 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 Lambert-Eaton News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to Lambert-Eaton myasthenic syndrome.