We Appreciate the Unexpected Joys in Life With LEMS

There was a time when I thought I’d never smile again.

For most of my life, my smile came easily. Through good times and bad, a smile never cost me much. I was able to compartmentalize my hurts and had a general sense that the good usually outweighed the bad.

But then our daughter Grace started showing signs of what we now know was Lambert-Eaton myasthenic syndrome (LEMS). Her mobility slowly slipped away. Her words jumbled together in a string of slurred speech. We bought a walker and then a wheelchair. Within a few short months, I was asking myself how we had gotten here.

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Despair enveloped me. I felt helpless. There was nothing I could do but walk Grace down this path and hope for better days. Our faith was critical as we walked through the valley of a LEMS diagnosis. It encouraged us through the hard days and sustained us on the worst days.

I clung to the Scripture found in Psalms 30:5, which states that “weeping may endure for a night, but joy cometh in the morning.” Oh, how I wanted that joy!

It didn’t happen immediately, but almost three years after her diagnosis, our joy has been restored. Over the past few months, we have experienced joy upon joy in Grace’s life and in our family.

I shared previously how Grace, now 17, was able to get a part-time job at a local grocery store. Two years ago, I couldn’t get her to walk into a grocery store. It was too much effort to get from the parking lot and then up and down the aisles.

Recently, I was so proud of her when she walked out of the grocery store after working a six-hour shift with a bag of goodies on her arm. After her shift, she walked around the store gathering some treats for herself and the family. Such a small task for most teenagers, but the joy just bubbled over in this mama’s heart.

This past week, we spent a few days at the beach for spring break. Two years ago, I thought we would never have a beach vacation again since walking on the sand and through a hotel was impossible for Grace. This time, Grace spent hours in the warm sun, designing sand castles and swimming in the pool.

Our morning has come, and I am going to soak in all the joy I can glean from this life. We are not promised a worry-free life or even a healthy one, but there is always hope that joy will come in the morning.

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 syndrome.