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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…

Last in a series. Read part one.  People often are sympathetic when they discover I had back surgery at age 13 to have a Harrington rod placed as a treatment for idiopathic scoliosis. They seem stunned when I show them pictures of me in a full-body cast after…

Friday, Sept. 18 is National Concussion Awareness Day. To raise more awareness of how dangerous concussions can be, I’m sharing the most difficult experience of my life. This is the first in a two-part series. *** OK, I will admit it. I was wrong. I’ve probably never…

Music has always been my escape. One Christmas after I had back surgery as a teenager due to severe scoliosis, the only gift I asked for was a Walkman. The ability to have music surround me, thanks to my headphones and a small, portable radio, seemed like the only…

Second in a two-part series. Read part one.  Pain management with cannabis takes conscientious planning when using the inhaled product. I learned quickly how little it took to relieve my breath-stopping pain. But while a few puffs relieved the pain, a few too many relieved me of all responsibilities…

First in a two-part series. I am certain my children never thought they would see the day their mother would use cannabis, let alone share my experience about its benefits with the rest of the world. If anyone asked them about their mother’s stance on weed while they were growing…

Every year since my Lambert-Eaton myasthenic syndrome (LEMS) diagnosis in 2016 has brought unexpected experiences. In the past year, my eyes have been opened to the amazing resilience of the mothers of rare disease patients. One mother I am blessed to have become friends with is Lori Dunham, also…