I’ve done it yet again. I’ve fallen in love at first sight. (Would you expect anything less of an Aquarius?) I’ve been searching for a new bedroom vanity that better suits my physical needs during my morning and evening routines. Finding new, functional furniture can be a…
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To those feeling too rare on Rare Disease Day (Feb. 28) let the following empower you. The saying “hidden in plain sight” can take on a new meaning when you have a rare disease. I’m rare because I have a huge wheelchair and tracheostomy, but that doesn’t mean I’m…
As my husband, Randy, and I slipped into our mid 40s, God plopped a little surprise into our middle-aged laps: a pregnancy. Totally unprepared in all ways for a baby, we scrambled with preparations until we were dizzy. Our son, Matthew, who was 10 at the time, was mortified with…
You know it’s a unique relationship when one friend helps the other use the bathroom. This is the scenario I found myself in a couple weeks ago when my longtime friend Lucas held my urinal for me inside the bathroom of our go-to comic shop. While I normally…
We all know that I hate getting up early. Just like I hate adjusting to a new wheelchair — I’ll do it if I have to, but that doesn’t mean I won’t complain about it. So you can imagine my dismay when my caregiver sent me the most dreaded…
I was once a rare traveler wandering the countryside. On my shoulders, I carried a basket of artifacts and relics. Each piece correlated to moments in my life when I’ve felt something within my heart — things both small or grand, benevolent or wicked — falling deep and deliberate like…
Wouldn’t it be wonderful if we could easily put into practice the lessons we learned growing up? We were taught to think about the effects of our decisions, but sometimes it is difficult to know how our actions may affect the lives of other people. For those of us with…
It is my yearly Chinese New Year tradition to complain about Chinese New Year. As with all honored traditions, this one goes back to my earliest memories of the holiday: My mum’s footsteps echoing throughout our house as she cooked breakfast before the sun rose. The…
When it comes to “Lost,” you either hate it, love it, or don’t get why people feel so strongly about it. I’m in the second camp, which is to say I feel strongly about the groundbreaking and controversial TV show. The writer in me is obsessed with everything from the…
It’s been 10 years since my last hospitalization. I’ve waited a long time to be able to say that, because I’ve never been able to say it before. This is a feat of epic proportions for someone with SMA. It’s even crazier when I reflect on the prognosis from my…
