“We have to, Kevin.” That’s the text my caregiver, Christian, sent me several months ago when he found out that “Star Wars” actor Hayden Christensen would soon be attending a pop culture convention in Washington, D.C. We immediately agreed that we had to go. Logistics of my…
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Every once in a while, I’m seized with unbearable jealousy. That’s not true. It isn’t jealousy so much as a sense of falling behind. Social media, while great for some things, is horrid when it comes to self-comparison. Every day, we come face to face with the many ways…
It seems like yesterday that our family was eagerly anticipating the addition of our third baby. On May 18, 1997, the wait ended with the arrival of our sweet Jeffrey! Eight weeks later, though, a diagnosis of the deadliest form of spinal muscular atrophy (SMA) crushed our dreams…
I have a confession to make. When the time comes to write this column, I often cry out to my parents, “What do I write about?!” I’m usually met with eye rolls. I don’t blame them. I’ve asked this question so many times that it’s become a running joke…
In 2019, I had my first videonystagmography (VNG) test. A VNG test uses ski-like goggles to test a person’s involuntary eye movements when moved into certain positions. Inside the goggles, a camera tracks these movements while the doctor assesses the problem on a computer screen. Though vertigo is…
This time 27 years ago, I was entering the third trimester of an unplanned pregnancy. My husband, Randy, and I had considered our family complete with two terrific children, Matthew and Katie. God, however, placed a cherry on top of our “fab four” with a big surprise: Jeffrey. Once we…
My caregivers give me a wedgie every morning. I’ll let that image settle into your brain before I elaborate. This part of my routine bears no resemblance to the act of torture commonly featured in teenage movies. It’s still uncomfortable, but necessary in my case. Once my morning caregivers, usually…
Jokes are my coping mechanism of choice. If there’s tension in the room, you can bet I’m trying to come up with some way to lighten the mood. I pride myself on staying as chipper as possible, even in difficult situations, like getting stuck repeatedly with needles. It’s amazing what…
A few years ago, I bought a book that I thought would change my life. It was during my self-help era, when I devoured any book I could find that would make me a better version of myself. With thousands of reviews and such high praise, I was curious to…
(Note: This column contains spoilers for the movie “Five Feet Apart.”) The 2019 movie “Five Feet Apart” focuses on a young couple, Stella and Will, who fall in love while receiving treatment for cystic fibrosis (CF). Their love is dangerous, though, because coming within 6 feet of others…
