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Being thankful even for SMA

It’s somehow already time for Thanksgiving, the designated day for us to give thanks for our blessings. Ideally, we should designate a few more days each year to doing that — like, say, the other 364 — but one day a year is better than none. I try to give…

Finding gratitude, even amid the toughest battles of life with SMA

Living with spinal muscular atrophy (SMA) often means facing many hardships and uncertainties. With physical limitations, emotional hurdles, and complex medical issues, SMA is constantly shaping and shifting my life. Though these are the realities I’ve lived with and grown accustomed to for 34 years, there are still some…

Choosing to represent the disability community well

Individually and collectively, it’s vital to be sensitive to what’s happening in the world around us. This awareness allows us to be empathetic and strive for change that improves society for ourselves and others. The SMA and disability communities have long battled inequality and discrimination that could…

The healing power of writing on my journey with SMA

Writing is a kind of magic — a spell woven with intention and purpose. It’s more than just a passion; it’s my superpower. I can bridge the gap between myself and the world through words, expressing empathy, kindling hope, and leaving an indelible mark on hearts I may never meet.

How my new home will enrich my life with SMA

Since July, my family has been converting the garage space in our new house into my own bedroom, bathroom, kitchen, and medical supply room. We’ve faced one challenge after another as we prepare to move. Currently, I have a great setup that accommodates my SMA needs. I have all…

In times of darkness, look for the bright spots

I consider myself an optimist, at least most of the time. Life has hurled more than a few lemons our way over the years; thankfully, I like lemonade. In 1997, when my husband, Randy, lost his job mere weeks before our third baby’s due date, I felt like we’d been…

What do you do when video game accessibility is inaccessible?

It’s 2014. I’m months-deep into a major depressive episode. Nothing is enjoyable, not even my all-time favorite video game. I feel listless in the worst of ways. Several of my friends are playing “Dragon Age: Inquisition” (DAI), the latest installment in the long-running video game franchise by developer BioWare.