Tim Burton’s “The Nightmare Before Christmas” is a family favorite around here, with my brother being the biggest fan of us all. He even dressed up as the movie’s main character, Jack Skellington, for Halloween one year. This beloved stop-motion animated movie has become a pop culture icon,…
From Where I Sit - a Column by Halsey Blocher
Growing up, I loved the library’s summer reading program. I’ve always been a bookworm, so logging hours of reading and being rewarded for my hobby was a highly satisfying endeavor. My favorite prizes were, of course, new books. Last year, I was thrilled to learn that this program from my…
I just turned 26 on Sept. 26, which makes it my golden birthday. Never heard of a golden birthday? You’re not alone. It’s believed they were invented by American author and teacher Joan Bramsch in the 1950s. She celebrated each of her five children’s golden birthdays, and the idea…
Our cat, Toby, waltzed into our family over a decade ago for what was intended as a temporary arrangement. She won our affection quickly, and we decided to welcome her into our home indefinitely. Not that she needed an invitation to stay. Toby said she owned the place, and who…
On the second Saturday of every August, the setting sun fades and is replaced by the ethereal glow of candlelight. Around the world, the SMA community comes together for a twilight vigil to remember our loved ones who have departed and to honor those living with SMA. Candle-bearing crowds…
Who doesn’t love the luxuries and amenities of vacation? Swimming pools, complimentary breakfast, new sights and experiences, and a freshly made bed to return to after a day of relaxation or adventure. Disabled people and our families also appreciate these comforts, but when you’re vacationing with SMA…
Our family loves vacationing by the sea, and we’ve recently returned from a trip to Roanoke Island, off the coast of North Carolina. Although we’ve passed through before, this trip was our first time vacationing in North Carolina. It won’t be the last. Waterfront views, fresh seafood,…
Every disabled person, including those with SMA, has likely received the well-intentioned compliment of being told they’re inspirational, but it’s not a label that everyone is comfortable wearing. This fact leads me to wonder why. Who should we take inspiration from, and how should we communicate it? We all…
It can be fun to let our imaginations run wild with the idea of choosing a superpower. The possibilities are endless, practically begging to be explored by creative minds. Superpowers might be things of fiction, but I can’t help wondering how my real life might influence my answer. Could there…
People with SMA often have very little privacy. Because we lack the strength to independently complete most activities of daily living, we rely on others to accomplish those tasks with or for us. Even intimate activities that warrant total privacy, such as bathing, dressing, and toileting, require the…
Recent Posts
- Reflecting on our SMA assignment and lessons from Dr. Seuss
- SMA treatment combo helps boy with type 0 mark third birthday, and walk
- The logistics of hugging a friend with SMA
- Problems with swallowing seen for SMA children despite early treatment
- The woes of adding a new ingredient to my medicine cocktail
