How the Hope of Today Helped Me Face the Trauma of Yesterday

At this time last week, I found myself back in the place where our journey with Lambert-Eaton myasthenic syndrome (LEMS) began.

We were living in Connecticut when our daughter Grace began experiencing unexplainable symptoms, including random falls, walking with a limp, and arm weakness. Thus began our exploration into the rare disease world. The journey would ultimately change our family’s trajectory.

Grace’s first symptoms began a tumultuous search that involved many specialists, MRIs, genetic testing, blood draws, and CT scans. It was a time of uncertainty and helplessness as we watched our daughter’s health deteriorate before our eyes.

We never did receive a diagnosis while living in Connecticut.

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Last week, as I strolled the streets I’d once called home, I couldn’t help but reflect on our last months there. I realized how traumatic they had been.

Cancer had been whispered. Muscular dystrophy was expected. Some counselors offered deplorable advice. Friends felt helpless to assist us.

Hints of that trauma still lingered around me. It was hard to revisit those memories, which were accompanied by despair and fear.

But that visit also brought healing. It was important that I face down the monsters that lurked in the darkness of those last days in Connecticut. To shine a light on my darkest fears was to acknowledge them and then move beyond them.

When we moved, we didn’t know what the future held. We didn’t know if Grace would survive or if she would walk again. Worst-case scenarios were laid before us.

Now, almost three years later, Grace is thriving. Her health has stabilized and her mobility is better than we thought possible. She is gaining weight and increasing her strength. Thanks to the proper treatment plan following her diagnosis, she is able to live well despite the limitations LEMS places upon her.

Today, we have something we didn’t have in Connecticut: We have hope. In turn, joy and peace spring from that hope.

For those trapped in the seemingly unending days of searching for a diagnosis, I want to tell you that you are not alone. Yes, it may feel like the world is spinning out of control and no one can offer what you need. Indeed, some days are hard to walk through.

But we have hope for better days. For the future. For treatment and medication, and one day, a cure.

I don’t live with rose-colored glasses. I’m fully aware of the struggles our Grace faces in light of her LEMS diagnosis. In fact, I hadn’t been away from Grace overnight in more than two years when I traveled to Connecticut. The evening I was away, Grace fell leaving the grocery store after more than a year without a fall. Guilt swept over me. If I had been there, she wouldn’t have fallen. Her falls jar her physically and me emotionally.

Yet, she brushed herself off and held her head high. We will face the falls together as those who love her most dearly, and we will rejoice in her triumphs and wins.

“Worry does not empty tomorrow of its sorrow, it empties today of its strength.” – Corrie Ten Boom

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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 myasthenia.