When our daughter Grace began exhibiting troubling signs of muscle weakness at age 14, symptoms that eventually led to a diagnosis of Lambert-Eaton myasthenic syndrome, our family quickly went into emergency mode. Our days and nights were consumed with care for her changing needs, medical appointments, treatment plans,…
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,…
The first question I asked after my daughter Grace was diagnosed with Lambert-Eaton myasthenic syndrome (LEMS) was what types of treatments were available to her. I do not take it for granted that treatment is available, because I know many other rare diseases do not afford the…
I love the expectation, hope, and anticipation that comes with the dawning of a new year. Opening a newly purchased planner or journal and writing down all I hope to accomplish in the new year is refreshing. For those of us living…
Raising a child with a physical disability can be a balancing act of sorts. It requires a balance between focusing attention on the child who needs extra care and the family’s other children. It requires balancing time to fulfill responsibilities other than medical appointments. But the…
Learning to live with a chronic illness takes some getting used to, and oftentimes adjustments are needed to help our loved ones live the life they envisioned for themselves. What came easily before doesn’t always come easily now. When our daughter Grace got sick as a…
Our little girl was handed to us on a cool, gray April day in the back room of a government building in Nanchang, China. She had just celebrated her first birthday in the orphanage that sheltered her that first year of life, and we impatiently counted…
Our story starts with a whole lot of waiting. I have never claimed to be a patient person, and when it came to my daughter Grace’s declining health, I was anything but patient in finding a diagnosis. Complicating matters was the fact that we were about to move…
Christmas is by far my favorite time of the year. Holiday music, trimming the tree, baking cookies, family gatherings — none of this can happen soon enough or long enough for my liking. As a military family, we traveled for the holidays for many years.
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…
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