When our daughter Grace was facing a rare disease diagnosis three years ago, we had no idea how significantly Lambert-Eaton myasthenic syndrome (LEMS) would affect her life. But we knew things had already been changing for her. Grace could no longer participate in hobbies and other leisure activities…
One of my first goals as a parent of toddlers was to teach them to swim, especially as our family lived in mostly warm-weather climates while moving every few years with the U.S. Navy. Much of our family time was spent at the neighborhood pool. Children’s birthday parties all took…
When our daughter was diagnosed with Lambert-Eaton myasthenic syndrome (LEMS) at age 15, our world shifted overnight. Suddenly, every decision we made had to be filtered through Grace’s additional needs. We moved to Jacksonville, Florida, to be closer to her neurologist. With her condition in mind, we picked…
My husband and I will have been married 29 years this October. In that time, we’ve lived in 16 homes, thanks to the U.S. Navy. Over the years, what we’ve looked for in a house has changed. At first, having four walls and a roof over our head was enough.
Note: This column describes the author’s own experiences with IVIG therapy. Not everyone will have the same response to treatment. Consult your doctor before starting or stopping a therapy. Our family learned the gravity of words when our daughter Grace was diagnosed with Lambert-Eaton myasthenic syndrome (LEMS)…
I have loved tea parties since I was a child. It brings me such joy to set a table with flowers, delicate china, fine chocolates, and delicious pastries. Gathering friends and family around the table with lit candles, soft music, and a pot of tea revives my soul. This is…
Reading is one of my favorite pastimes. Some of my earliest memories are sneaking away to the bedroom I shared with my sister and opening a new book. This love of reading has followed me into adulthood, and I’ve endeavored to pass it on to my children. One of my…
Recently, my daughter Grace had an amazing opportunity to speak at Grace Under the Oaks‘ annual fundraising event. The Florida-based nonprofit offers horse therapy to adults and children with health challenges. Grace was able to share what the past two years of equine-assisted therapy have meant to her.
For the past two weeks, the elevator at my daughter’s school has been out of order. This complicates things greatly for Grace, who was diagnosed with Lambert-Eaton myasthenic syndrome (LEMS) when she was 15 years old. Looking back, I am so grateful we made the decision to home-school our…
One of the common symptoms of Lambert-Eaton myasthenic syndrome (LEMS) is muscle weakness, which, for many, causes problems with balance and gait. When our daughter Grace was diagnosed at age 15, we could first see her symptoms in the way she walked. First, we noticed a slight…
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