We live with a thief lurking among us.
Whether it is due to Lambert-Eaton myasthenic syndrome (LEMS) or another rare disease, we all feel the loss of what is stolen from our families and loved ones with a chronic illness.
When our daughter, Grace, was first diagnosed with LEMS, we had just moved to a here-on-earth paradise. We lived on Florida’s Gulf Coast, a quarter-mile from white, sandy beaches and crystal-clear ocean water. We were within walking distance of beach access, sunshine, and perpetual vacation.
But this paradise was lost on me, because as any parent knows, we are only as happy as our unhappiest child.
I was watching my child struggle to get out of bed in the morning and take just five steps from her bedroom to the kitchen. She was unable to eat without gagging, and she rapidly dropped to 72 pounds as a 14-year-old.
One day, I stood on the pier overlooking the beach watching my two other children frolic in the waves and sunshine. They ran barefoot on the sand, kicked a soccer ball, boogie boarded in the waves, and laughed and joked together. These were all things children should be doing at the beach, but all I could see was the absence of my third child, who was at home, barely able to get out of bed.
The shimmering sunshine and warm waters of the Gulf Coast were as foggy as the dreariest Northeastern winter day to me. I couldn’t look beyond my daughter’s struggle, and our world shrunk dramatically.
LEMS has stolen so many things from Grace and our family. A year and a half out from diagnosis, we are still finding our way by restoring some things and adapting to others.
Grace loves working with animals, and has a special place in her heart for horses. But when she received her diagnosis, she thought her ability to ride and work around horses would be lost forever.
Once we were able to get her on the right treatment plan and medication, Grace began to gain back her strength and balance. I knew it was time to begin building her confidence, too, and helping to restore some of her first loves.
Through a series of events, I was able to find what I believe to be a perfect, God-ordained match for Grace and her love of horses. We stumbled upon this perfect fit at a nonprofit organization just miles from our home. It specializes in equine-assisted activities for children and adults with mental or physical challenges.
Since her first appointment, we have felt the love and gentleness the staff generously pours upon Grace. They treat her in a way that makes her feel capable and confident in her own abilities around the horse.
Grace’s happiness and contentment have visibly increased in her everyday life, and I equate that directly with her ability to live out one of her dreams through this amazing program.
Those responsible for the program have given her a gift beyond anything I, as her mom, could have given her. They have given her a bit of her spark back, and if she were able to jump, I’d even say their efforts have given her a little spring in her step.
I am thankful that we now see more than what has been stolen from Grace because of chronic illness. Today, we see a restoration in Grace’s life, and we pray that we’ll see more of this with each passing day.
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.
We are sorry that this post was not useful for you!
Let us improve this post!
Tell us how we can improve this post?