I’m a product of the 1970 and ’80s. We grew up with big hair, neon fashion, and the rise of music videos on MTV. I can remember sleeping on the floor of our family…
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Our family started quarantining almost a year ago this week. Our daughter Grace has a compromised immune system due to Lambert-Eaton myasthenic syndrome, which made us especially careful and protective of her health and…
It is humbling to know that we are the beneficiaries of those who have gone before us. We stand on the shoulders of those who worked hard for us to benefit from their efforts…
Receiving a diagnosis of Lambert-Eaton myasthenic syndrome can be overwhelming. For many, the journey likely entailed multiple visits to doctors and many years of waiting. When we received our daughter Grace’s diagnosis, we learned…
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…
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…
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…
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…
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…
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…
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…
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…
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…
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