The Job I Never Wanted

If you had told me three years ago that I would be writing about my daughter’s rare disease and my experiences as her caregiver, I would not have believed you.

This is a job I never envisioned on my resume. My children were supposed to grow up healthy and happy and have their lives play out just as I had planned. We had a happy home, an intact family, and healthy children. My husband and I were busy raising them, completely unaware of the illness lurking below the surface of our daughter’s immune system.

I had deep empathy for families with children with disabilities, but that happened to other people, not us, right? But as most of us know, life can change in the blink of an eye, and for our family, it did just that.  

Our daughter Grace was 14 when she began to limp on the basketball court. We didn’t think anything of it until we were on a family vacation and Grace could not keep up with us in the airport. She began to exhibit new symptoms daily, from muscle weakness in her legs to falling down, slurring her words, and gagging on her food or drink. 

Soon, she was unable to get out of bed on her own or go up and down stairs. After many months of searching and multiple misdiagnoses, we finally received a diagnosis of Lambert-Eaton myasthenic syndrome.  

After we received the diagnosis, we did the only thing we could do. We picked up the metaphorical stretcher that was our daughter’s life, and we carried her. Just as the stretcher-bearers used to carry the wounded off the battlefield, we crouched down beside her, showing her she was not in this fight alone. We lifted her up so she could see beyond her immediate circumstances and look toward hope. We carried her to a safe place where she could improve and live her fullest life.  

I would never have applied for this job: the caretaker of a child with a rare disease. Not because I begrudge taking care of our precious daughter — I most certainly do not. Of course I would take on this disease myself if it meant sparing her.

I would not have applied for this job because it is not the natural order of things to see your teenage daughter become dependent upon you again for so many basic necessities. And yet, it happens.  

My hope is that this column will be a safe place for the weary, a source of inspiration for the dried up, encouragement for the downtrodden, and camaraderie for the lonely stretcher-bearers out there who are weary from battle and carrying the heavy load of a loved one. We are not alone in this fight.

Look up and see the other stretcher-bearers on the battlefield with you carrying their wounded. Let’s acknowledge and strengthen one another, for how can we carry the stretcher if we need one ourselves?

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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.