As SMAers, we’ve probably all been there. We work tirelessly to build a caregiving team. We train, explain, and expose the inner workings of our dignity. We allow new hands and energy into the routine of our daily needs. Our schedule finally cruises along swimmingly — then suddenly, life…
When I was growing up in Fort Worth, Texas, our family vacations were precious getaways. Time and money constraints kept us primarily in Texas, but there was plenty to do. During one summer trip to south Texas, we walked across the border to Mexico on a dreadfully sweltering August day.
On the last day of the annual Cure SMA conference, the closing session is always a panel called “It’s a Wonderful Life.” It features a group of adults with SMA talking about their daily lives and answering audience questions. Its core theme is that there are plenty of…
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,…
From the moment I wake up to the time I go to sleep and get lost in my dreams, I’m fully dependent on others to help me meet my physical needs. If I have to change positions in the middle of the night, I call for someone to assist me.
In my previous column, I explained how two years ago I was rescued by a heroic person in my life. Just as my main night nurse of eight years was moving away, a new day nurse of mine agreed to switch to nights. As relieved as I was to…
My dad had a handful of stories he liked to tell when I was growing up, like repeatedly playing a favorite vinyl record. One was about me loving music since I was an infant. “You’d stop crying when I sang,” he’d say. As a child, I regarded his recollection with…
The older I get, the more easily I cry. It never used to be that way. I didn’t cry at movies. I definitely didn’t cry when I was happy. Crying was terrible, and I hated every second of it. Now I cry at the drop of a hat. Tense conversations…
“This is probably my favorite part about having a feeding tube,” I said to my mom as a phlebotomist pierced my vein with a needle. Since becoming tube-fed, I’ve become more hydrated. And since becoming more hydrated, I no longer need to be poked and prodded every time I go…
Hi, friends. It’s been a minute since I’ve written to you. Some of you are well acquainted with me, while others are just beginning to peek into the window of my life as I put pen to paper. Yes, I know this is a digital age, but my love of…
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