The lessons I’ve learned from my daughter’s journey with LEMS
Observing how my daughter handles hardship has humbled me
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There comes a time in every parent’s journey when they discover that the child they’ve been teaching has quietly taught the parent some of life’s most profound lessons. Watching my daughter Grace, 21, live with Lambert-Eaton myasthenic syndrome (LEMS) has provided an abundant opportunity for me to learn from her.
Grace was diagnosed with LEMS at age 15, and her life drastically changed when she was forced to give up many of her passions and pastimes. The talents and skills she had worked so hard to perfect slowly slipped away as her muscles weakened and failed her.
Grace struggled briefly with depression while we were searching for a diagnosis. However, after receiving it and a treatment plan, her attitude toward living with a disability has been downright impressive. Three words come to mind as I reflect on her progress: contentment, joy, and compassion.
Contentment: Grace lives a contented life. She doesn’t look at other people’s lives and wonder why they have it so easy and she has it so hard. If she were to play the comparison game, she would lose. So many people her age have it much easier than she does. But she’s learned to be content with who she is, LEMS and all. This disease has made her emotionally resilient, more confident, and stronger in spirit.
Joy: My daughter lives a life filled with joy. Grace hasn’t let LEMS limit who she is or what she does. She laughs easily and is always ready for a new dad joke. I think facing a health crisis at such a young age put her life in perspective. She genuinely doesn’t sweat the small stuff.
Compassion: Grace is a person who notices need. She looks around a room and sees who needs a friend and goes to that person. She understands what it feels like to be different and notices others who feel that way. Grace quietly applies the compassion she feels for others by befriending, encouraging, and speaking kind words to other people. This compassion has grown because of the adversity Grace has faced with LEMS.
An abundant life
Observing how my daughter handles hardship has humbled me. Compared to her, I’ve lived a carefree life in terms of health. My body has done what it is supposed to do for most of my 54 years. It hasn’t turned on me like hers did.
I sometimes easily grumble and complain about little nuisances, though. But it takes only a second to look at my daughter’s pill box and be reminded of the struggle she has with her body every day. I have no right to complain about anything.
Yes, there are hard days. Yes, she has processed all the emotions that come with a big diagnosis. But she’s done it well and, in turn, she’s taught me so much.
Overall, Grace lives an abundant life with LEMS. My hope is that others can, too!
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.
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