I spent a small fortune on cute books for the kindergarteners I taught at Brockman School, then a self-contained public school in Columbia, South Carolina. The students, many with severe disabilities, delighted in hearing the animated voices…
Read more
The first Rare Disease Day was celebrated in Europe in 2008. The United States participated the following year, and by 2019 more than 100 countries had joined in to highlight rare diseases. The special acknowledgment…
My first experience with the death of someone close to me came shortly after my 16th birthday. A good friend since elementary school, Candy had moved to another state with her parents and younger sister…
After the delivery of our baby Jeffrey, I failed to notice his abdominal breathing. My husband, Randy, possessed both an eagle eye and the presence of mind to ask the doctor and nurses about it. No one…
Our third baby, Jeffrey, was diagnosed with spinal muscular atrophy (SMA) on a midsummer evening in 1997. The referral to a pediatric neurologist came that morning during what was to have been his 2-month “well” checkup.
I’ve been in awe of spectacular night skies for as long as I can remember. When our family moved to the mountains of North Carolina (close to the stunning Blue Ridge Parkway) at…
Our third baby, Jeffrey, shook things up from the moment the nurse at the doctor’s office exclaimed, “You’re pregnant! You’re very pregnant!” She seemed exceptionally delighted to announce the confirmation. Although my husband, Randy, and I were…
Life is typically made up of occasional, seemingly random thuds. Thuds are moments when we sit up and take notice. We don’t usually know what we’re noticing, but there is no mistake that thuds are significant.
The month of November kicked off eventfully in 1997 in the wee hours of the morning when our electricity went out. Jeffrey, our 5 ½-month-old baby with spinal muscular atrophy (SMA), relied on blow-by…
The excitement of baby news for novice grandparents rivals that of the soon-to-be parents. Giddiness pervades the pondering. Who will the baby look like? What strengths and interests will the little one inherit: academics, arts, sports, creative…
I’m a flop at remembering details and dates. However, 1997 is the exception. On July 7, 1997, our dog Duffy was killed by a car, sparking a conversation with my son Jeffrey’s older siblings…
When my husband, Randy, and I decided to expand our family, I promptly became pregnant … and miscarried. Optimists, we tried again. And again. Meanwhile, we returned to school for teacher certification and accepted teaching assignments…
What seems a lifetime ago, my husband, Randy, and I decided to return to school for our teacher certifications. After quitting our joint job at a residential facility for at-risk teens, Randy went first.
Visit the SMA News Today forums to connect with others in the SMA community.
