Ella is growing up. She is starting to see the world through new eyes. She’s finding humor in light sarcasm, developing a taste for music, and exploring her artistic side. Her friends are becoming increasingly important in her life. Last weekend she asked if one…
Recently, I had a full day of appointments in the city. It takes two and a half hours to travel there, and leaving my house for that long is a challenge. Days like these make me miss when all my doctors were at the children’s hospital.
When it came time to plan for my brother’s bachelor weekend festivities, I was adamant about participating as much as possible. Events like this aren’t always inclusive for people with disabilities, but the two guys who planned this weekend wanted to make it accessible for me. I knew…
Tucked away near the rustic shores of a quaint lake sits my childhood home: a ranch house built of sincere brick and steadfast mortar. A wistful flowering crab tree adorns the front yard with tendrils of wisdom, its fuchsia blossoms bursting at the arrival of each new spring. Swirls of…
The thing about taking amoxicillin every day for years is that your body builds up an immunity. It works for a while, and then, without warning, it doesn’t, which is why it’s more or less a stopgap measure. You take it until you can’t,…
SMA is obviously a chiefly negative condition. I don’t think that requires any explanation. However, living with this disease also has a few silver linings, which I’m always looking out for. It’s immensely helpful to keep a positive mindset and cling to the things I actually have going…
My husband and I moved into our old farmhouse in the mountains of North Carolina as 1995 wound to a close. Big-city Texans in a previous life, Randy and I were giddy at the thought of a quiet place void of traffic, crowds, mosquitoes, and oppressive summer heat. Our…
Taking care of Ella is a full-time job. She needs help getting food and water, going to the bathroom, and moving around into various sitting positions. She needs help playing with toys, swinging on the swing, and going in and out of the house.
Wicca kind of fell into my lap when I was about 12. Or maybe I fell into its lap. Who really knows with these things? I’ve always been what I’d consider a “Halloween girl.” Someone a bit more spooky and ethereal than I actually…
On Tuesday, April 2, I embarked on a noble quest. At one point, I thought I would need to summon the power of all six infinity stones to accomplish my goal. My mission was to obtain two tickets for the opening night of…
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