There’s a famous quote by Randy Pausch in his book “The Last Lecture“ that says, “We cannot change the cards we are dealt, just how we play the hand.” My heart holds so much truth in this quote because I often envision my life with SMA like building a…
Keeping up with the calendars around here can be dizzying. One desk calendar is reserved for scheduling jobs for our small carpet-cleaning business. Reminders to do one thing or a hundred dot almost every square on another. We have a reservation book for our cabin and a…
The house went from quiet, clean, and calm to noisy, messy, and crazy in a matter of minutes. The kids are home from camp! Ava and Henry attended a camp called Covenant Harbor and Ella attended MDA Summer Camp. We purposely scheduled their camp…
It is July, the seventh month of 2019, and I am ready for this entire year to be done. I’m not joking. Something drastic and stressful has happened every month so far. Not with me — I’m fine — but I’ve had multiple family members become sick, and…
“Dude, use your robotic arm to grab my leg!” Superstar blogger Shane Burcaw said these words to me when I met him a couple of weeks ago. Having read his books, and watched him and his fiancee, Hannah…
I wasn’t sure what to expect from this year’s Cure SMA Conference. I’d attended only once before, but I was too young to care about anything except for the service dog that I met and for which I subsequently longed. I knew there’d be…
Like many people, I love to cook. One of my favorite activities at Turnstone’s Adult Day Services program is the monthly cooking class, where I have learned to make all sorts of tasty dishes ranging from homemade peanut butter cups to grilled honey mustard chicken. I’ve also spent many…
The title of this column may be a tad deceiving — so allow me to clarify. My wheelchair only goes 6.2 miles per hour, and when you have an irrational fear of birds and are fleeing from a turkey that is chasing you, you realize that there’s nothing fast about…
It’s summertime, and that means holidays, road trips, camping, and hotels. Also, sunburns, mosquitoes, and probably dehydration. I’m kidding about the dehydration. My mom makes sure that I drink more water than she does. I’m mostly content to be in the house with the blessed air…
Thanks to the fine folks who handled my wheelchair at the airport a few days ago, I’m now writing this column while sitting in my bathroom seat. My mom is going to get my chair looked at, and until then, I needed to…
Get regular updates to your inbox.