Ella had a fun-filled week. Her cousin and aunt came in from Virginia to spend some summer time with the Castens. Her other two cousins, who live in Chicago, also spent time with the family. Family outings can sometimes be a challenge. We have to make…
We’ve finally had some decent weather. It has been rainy lately, which I thoroughly enjoy because I’m allergic (literally, not figuratively) to the burning orb in the sky that is the sun — both my skin and eyes react. But construction doesn’t happen when it’s raining, which…
Of all the technologies that I use in my everyday life, the two most important ones are my wheelchair and my JACO robotic arm. My chair keeps me moving from one place to the next, and my robotic arm compensates for many of…
I was the kid with 50 different diaries. Usually pink with sparkles. Bonus points if they came with their own bejeweled pen, because what 9-year-old girl doesn’t like rhinestones? The issue is that I never used them. People would buy me diaries…
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…
