Driving Miss Connie: Trips in my van are always an adventure
One of the most common questions new friends ask me is: “Do you drive?” When I’m feeling snarky, I refer to my wheelchair and respond: “All the time.” But I know they are actually…
Caring Together – Connie Chandler
Connie Chandler is the director of family engagement at the nonprofit organization We Carry Kevan. She grew up in the foothills of North Carolina but now owns a home and lives in Fort Wayne, Indiana. She was diagnosed with SMA type 2 when she was 18 months old. She believes the best way to receive great care is to give great care to those around her. Through her column, she hopes to share funny and sweet stories about her friendships with her caregivers and the ways they are growing together.
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Traveling with SMA is better with people I love
I love to travel! A trip to England this summer was my first journey overseas from my Indiana home, but I’ve been to a lot of beautiful and amazing places in the U.S. and…
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I may be queen of my kitchen, but I enjoy cooking together
“What are we making for dinner today?” my friend asks as we head to my kitchen. I love when she says “we,” because she knows I like to be an active participant in this…
‘Call Me’: What the Labor Day MDA telethon taught me about advocacy
What comes to mind when you think of Labor Day? For some people, it might mean a cookout, a day trip to the lake, or a last, desperate dip in the swimming pool. For…
A celebration of breakthroughs, mine and my parents’
My parents came to visit me last weekend. For the past three years, I’ve been living on my own, 600 miles away from them. I love my home and my community, and I know…
What I would’ve missed out on if I’d said no to life with a disability
“Thanks for inviting me on this trip,” my 9-year-old friend Forrest said to me last weekend. His parents were in the gas station convenience store, and we were alone in the car for a…
To find a team of caregivers, I had to rethink my ‘ideal’ criteria
In my favorite movie of all time, “The Princess Bride,” there’s a scene I love because I can relate to it and have learned a valuable life lesson from it. And today…
Why can’t my new wheelchair help me dance?
I recently got a new wheelchair! Thanks to the good folks at Numotion, I’m happy with the upgrades, including a new seat cushion, a phone holder, and headlights. My friends have been asking me…
When SMA symptoms make me feel ‘Muppety,’ I rely on my friends
“I’m feeling a bit Muppety today.” It’s an adjective I made up for myself years ago (meaning “like a Muppet”) because there are just some aspects of having a neuromuscular disability that are hard…
Leading with the power of our positive stories
Last week I had the honor of speaking at and participating in the 39th annual SOFT Conference. SOFT, which stands for Support Organization for Trisomy 18, 13, and Related Disorders, is a nonprofit…
There’s nothing like finding a community where we belong
Every year while I was in high school, I went to a weeklong summer camp with my church youth group. It was my favorite week of the year because I felt like I belonged…
Grateful for sentimental souvenirs and friends who stick around
As I unpacked my suitcase after a trip to England, I found a little paper bag that held smooth pebbles, bird feathers, a snail shell, and a piece of sea glass — things that…
