Our nights are broken up by machines beeping, or Ella calling for us to reposition her as she sleeps. Having a child with SMA means interrupted sleep is par for the course. Overnight, Ella has her feeding pump running, giving her…
The other day Facebook reminded me that a year ago I gave stand-up comedy a shot at an open mic night. My local comedy club does open mic sessions every week, and since I have a few comedian friends who had been encouraging me to try it…
I’m writing this in the car again, off to Iowa for a weekend of family visits. It was a busy week, so I’m looking forward to a couple of hours of driving. For me it is a chance to catch up on things: Grad school applications, classwork.
Second in a series. Read Part 1 here. There’s a certain significance that Dec. 4 holds in my life. What started as an ordinary day morphed into the day that forever changed the course of my life. That’s just how life works in its mysterious ways. The…
Ella has lost five pounds over the past month, which has been the result of a dietary change. Before this change, she was primarily getting her nutrition via G-tube, while on an amino acid diet (known as an AA Diet) consisting of several nourishing liquids…
Since April, I’ve been writing this weekly column, and I’ve enjoyed every minute of it. Telling my story here on SMA News Today and sharing my thoughts on a wide range of topics has been liberating, rewarding and it has allowed me to connect with others…
By the time this gets published, I’ll have started the last semester of my undergraduate career, which is exciting … and terrifying in equal measure. People always say it goes by fast, and in some ways it does, but all I’ve been able to think…
If I asked you right now to tell me what your life’s defining moments were, what would you choose? Would it be something that left you feeling content and hopeful? Or would it be something more dark and gloomy? Each of us has moments when it’s almost as…
Ella sits in the waiting room every Monday at 3:30 p.m. as Ava and Henry receive their instrument lessons. Ava plays the violin and Henry the piano. While she waits, Ella either reads or plays on her iPad, practicing patience. At home, Ava and Henry are to practice…
Living with SMA or any kind of visible disability means that numerous awkward conversations inevitably will occur. It’s simply one of the things that happens when you’re in a wheelchair, especially when talking with kids or really, really dumb adults. Yet with all the odd comments and questions…