The Value of Supportive and Encouraging Relationships in Life With LEMS
It’s funny to think how life’s little moments can suddenly become momentous. Rarely do I start a day thinking it will be spectacular. However, when we intentionally look for the good flowing through our days, we can’t help but see the beauty all around us.
Several months into my daughter Grace’s illness, I resolved to purposely seek out and recognize the good in each day. I was tired of the heaviness of our lives. I knew the culture of our home needed to change. We are not victims in this life, but recipients of precious time that many others don’t have.
We began to look for the good that comes in spite of, or sometimes because of, Grace’s Lambert-Eaton myasthenic syndrome (LEMS). When I began looking for these gifts, I was blown away by the richness of our blessings.
Forums and Zoom meetups
Our lives have been deeply enriched by the beautiful LEMS community. Because LEMS is such a rare disease, many people living with it have never met another LEMS patient.
The Lambert-Eaton News Forums and monthly Zoom meetups have been amazing for connecting and sharing information and experiences. It is beautiful to see people within the LEMS community join together. Encouragement is quickly offered. Experience is shared, and a listening ear is always available.
Equine-assisted therapy
As a mother, one of the most basic hopes I have for my children is that others will stand beside them and invest in them. To know my children have people in their lives who see and hear them, believe in their potential, and value them as individuals is a real gift.
Grace has found these key relationships through multiple avenues, but our most profound and recent gift has been the staff and volunteers at Grace Under the Oaks, a nonprofit that provides equine-assisted therapy.
When Grace began the therapy last November, I never imagined it would have such an effect on her life. Staff and volunteers generously poured knowledge, time, and attention into Grace as they taught her everything from diet and hygiene to tacking and leading a horse. They encouraged her and built her confidence. They set goals for her, which in turn motivated her to fight for strength.
After 11 months, it was finally time for her to get on a horse this week. I, along with staff, volunteers, and the owners, watched with tears in our eyes as Grace mounted a horse for the first time.
Only one short year ago, we had to lift Grace from her bed every morning. Oftentimes, once she was in a sitting position, she would fall back over because she had no core strength. To see that same teenager mount a horse and have the strength to ride was monumental. Her accomplishment was worthy of celebration.
Grace’s first ride. (Photo by Lori Dunham)
Some things can never be repaid. This experience was one of those times. Words can’t convey the gratitude we have for the Grace Under the Oaks family and all who make Grace’s therapy possible.
To me, there’s nothing more beautiful than a very average Monday when the seemingly impossible happens.
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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 syndrome.
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