For most of my teenage and early adult years, I had big dreams of working in fashion. As a creative person, the behind-the-scenes work always intrigued me the most. I loved the process of concept to creation, the thought that went into the garments, what inspired the…
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April brought with it more than showers in the water department. Our son Matthew and his family visited our daughter and son-in-law, Katie and Paul, on Easter weekend. Besides the beach, they had access to a nearby swimming pool. As our granddaughter Clara, 6, dipped her toes into the pool,…
As you get older, proper rest tends to become an appointment you have to schedule. It’s something you have an abundance of when you’re an infant, but its presence steadily decreases in your life once school, work, and social engagements take up increasing space. I’ve witnessed this phenomenon among my…
I correspond with a number of friends and acquaintances in the SMA community on a regular basis, but mostly through social media and work. However, there is one friend I met at a conference in 2017 who is a bit of a maverick. Mike has no social media presence…
When it comes to healthcare, I’ve had remarkably good luck. There are, of course, bad apples. See, for example, the gastroenterologist who rambled about “The Odyssey” as he punctured my stomach lining. Or the surgeon who, in my young, still-developing mind, undeniably had it out for me. (A classic…
Somehow, it’s already been three years since I began sharing my story with you in this column. It’s been a beautiful, heartfelt adventure that I’ve thoroughly enjoyed. But I have to admit that when I invited you to pull up a chair back in 2019, I didn’t really…
Lying in a hospital bed, I watched as a nurse demonstrated how to use a nasojejunal tube (NJ tube) to my parents. I could tell they were nervous. They learned about an NJ tube only three weeks earlier, and everything about it seemed so foreign. My mother stumbled through…
My optimistic crust cracked a bit when I opened the mailbox last week and spied an envelope from my late mother’s life insurance company. It could have been correspondence requesting additional information so they could “process this claim promptly,” or it could have been the proceeds from the claim.
I was at a friend’s wedding a few months ago when I pondered the question of how to properly introduce myself. Typically, I give the spiel that the company I work for is a network of rare disease websites, and my job involves overseeing online communities and writing and…
There’s nothing quite as satisfying as checking an item off your bucket list. Earlier this year, I put on my big girl pants and rescheduled a long-awaited tattoo appointment. It was a whole ordeal — one you’ll remember if you’ve been reading my column for a while. In late January,…
