I won’t give in to the heaviness of my daughter’s illness
The day my 14-year-old daughter couldn’t get out of bed on her own was the first time I really felt the heaviness of life. It was then we knew we were facing a major…
Stretcher-Bearers — Lori Dunham
Lori Dunham and her family have lived all over the world thanks to the U.S. Navy. She has a degree in human resources but enjoys writing to encourage and inspire others. When her daughter Grace was diagnosed with Lambert-Eaton myasthenic syndrome at age 15, Lori sought community and encouragement from those walking a similar path. Lori’s mission in writing is to inspire and encourage those who find themselves in the role of caregiver. When she is not writing or homeschooling her two youngest, Lori enjoys reading, baking, and spending time with family. Currently they live in Jacksonville, Florida.
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My daughter finally returned to one of her favorite activities
When my girls were 10 and 12, the Navy moved our family from the warm climate of Florida to the shores of New England. We embraced Connecticut wholeheartedly and couldn’t wait to see snow.
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Evaluating the risks and rewards of our daughter taking prednisone
From the time I was a little girl, I’ve always loved gymnastics. I grew up in the 1980s, when gymnast Mary Lou Retton was taking the world, or at least the United States, by…
Our LEMS journey has taught us to celebrate the road less traveled
I’ve always loved the start of a new school year. Freshly sharpened pencils and clean, untouched notebooks bring me a lot of joy. Each school year brings exciting opportunities, thrilling books to read, and,…
Managing emergency preparation when special needs are involved
Last week, many of us here in Florida had to prepare for Hurricane Idalia. Emergency notifications warned of imminent inclement weather. By midweek, our grocery stores were bare and the line to fill…
A recent family vacation gave my daughter an opportunity to do more
Summer at our house usually overflows with days at the pool, cookouts with crunchy corn on the cob, and long, lazy vacations. But when our youngest daughter, Bethany, lost one of her…
This summer I learned to value life more fully
The other week, we were once again at Wolfson Children’s Hospital in Jacksonville, Florida, for my daughter Grace’s Rituxan (rituximab) infusion. For the past two years, Grace, 18, has received infusions every…
The LEMS community taught me how to advocate for my child
I have lived in many countries and cultures, thanks to my husband’s service in the U.S. military. One of the first things we did upon arriving in a new place was learn how to…
A reminder to stay vigilant while on immune suppression treatment
She burned with fever the day we held her for the first time. Her little lungs struggled to breathe between coughing fits. Our daughter Grace was just 13 months old when we traveled across…
How the kindness of strangers boosted us on a difficult LEMS day
Last December, our family spent a few days in Atlanta working with the humanitarian aid organization Samaritan’s Purse on its project Operation Christmas Child. It was a trip I wasn’t sure our daughter…
A change of scenery offers a reprieve from LEMS symptoms
A plaque hanging in our dining room lists all the places our little family has called home. Those include Camp Lejeune, North Carolina; Norfolk, Virginia; La Maddalena, Italy; and Sembawang, Singapore, among others. Throughout…
It’s not a fantasy: We can build a community that matters
“Friendship is the greatest of worldly goods. Certainly to me it is the chief happiness of life.” — C.S. Lewis C.S. Lewis is one of my favorite authors. His “The Chronicles of…
Why it’s important to be informed about drug interactions and LEMS
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…