Rediscovering the power of hope as my daughter’s health improves

“I don’t know what lies around the bend, but I’m going to believe the best does.” — the author L.M. Montgomery, in the novel “Anne of Green Gables”

Hope. We throw that word around easily. We hope people have a nice day or remark that we “don’t want to get our hopes up.” Yet without hope, we can shrivel under the weight of the burdens we carry.

Have you ever felt hopeless? I’ve felt truly hopeless once in my life. It was shortly after my then 15-year-old daughter Grace started exhibiting symptoms of what we now know was Lambert-Eaton myasthenic syndrome (LEMS).

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There was nothing gradual about the decline in Grace’s health. Falling randomly, slurring her words, gagging on food, having difficulty walking, and experiencing extreme fatigue were some of her most prevalent symptoms. LEMS hit her hard and fast.

When we finally managed to see a neurologist, we were left with the impression that there was no hope of improvement or healing.

Grace sunk into a depression that was almost worse than the disease itself. She couldn’t get motivated to go to physical therapy because she thought her symptoms wouldn’t improve.

I also felt despondent and in despair about the circumstances we were living through. I thought nothing would ever be good again. A dark cloud had settled over us because we had no hope.

The arrival of hope

But then, gradually, other people with LEMS started sharing their stories. They offered us hope. I began to entertain the idea that just maybe, Grace would one day be able to ride a bike again, walk on the beach, swim, hold a job, and raise a family of her own.

If I could tell my younger self one thing, this would be it: As long as we’re living and breathing, there’s hope for a better tomorrow. I wish I hadn’t wasted so much time living in hopelessness when it came to Grace’s illness.

It’s taken almost five years of treatment for Grace to improve. But she has improved, and dramatically so. At her latest neurology appointment, the doctor said Grace has almost normal strength for her age. He was quite impressed with her progress.

I never thought we’d be able to walk through an amusement park or even a grocery store again. Yet Grace has done both. We weren’t sure she’d go to college, drive a car, or hold a job. She now does all of those things.

I’ll never underestimate the burden that LEMS causes. But we now have renewed hope for Grace as she launches into adulthood, stronger than we ever thought possible.

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.