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…
Unlike most days when I draft my column, I had this one all figured out. Recent brain sparks of potential topics provided me with such confidence. I plopped down at the computer earlier than usual on Sunday to tend to a few odds and ends before getting down to the…
My 6-year-old niece, Lily, made an astute observation while we were waiting in line at Disney World to get a picture with Daisy Duck. “Is that a person in a costume?” In a place designed to capture the imaginations of children, leave it to Lily to break the spell with…
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