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School books, folders, random scratch paper, art supplies, food, drinks. All of this lay aimlessly on our kitchen table. Until recently, my children — Ava, Henry, and Ella — spent much of their day at the table. There, they engaged in e-learning, arts and crafts, and eating. We…

A blue body cast covered me from my waist down. The pain in my right leg skyrocketed each time I moved. I intentionally tried to avoid going to the bathroom, because I couldn’t endure the misery of transferring out of my bed. Just the sight of my mobile…

I cried, really cried, for the first time last week. My mom is working from home (WFH) and has transformed our basement into a makeshift office. My dad has become my full-time caregiver. Our cat, Josie, has been forced into quarantine with…

Reports about COVID-19 have been all over the news and social media. People around the globe are being urged or required to practice social distancing, proper hand washing, and sheltering at home to prevent spreading the highly contagious virus. You might be experiencing social distancing or self-quarantine for the first…

I was scrolling through Instagram recently and found myself growing increasingly bitter about what I saw. People were congregated on beaches, packed like sardines in bars, and carrying on with their lives as if a global pandemic wasn’t happening around them. At this point, the novel coronavirus needs no introduction.

It seems fitting to address the current whammy threatening every single person on the planet. It’s unfortunate that it’s a menacing global health upheaval bringing us together in myriad ways. On the other hand, maybe that’s what it’s taken to counter the relentless political squabbling and divisiveness.

Ella loves school. She thrives on social interactions and has a thirst for knowledge. Every day after school she gets a snack and pulls up to the breakfast room table to work on her homework. On weekends she plays school and pretends to be the teacher. Her grades…

The world is holding its collective breath as COVID-19 makes its way across the globe. My daughter Ella has SMA. Her respiratory system is particularly fragile and compromised due to her disease. A simple cold can wreak havoc on her, landing her in the hospital…

Almost every aspect of my life with SMA comes with a risk factor. Whether I’m traveling out of town or going to a movie with friends in the wintertime, I’m putting my already compromised immune and respiratory systems at risk. My health has improved significantly in recent years,…

For many years, I’ve been involved in a fantastic local organization called Turnstone that serves the disabled community with a variety of services. I’ve been blessed to benefit from Turnstone’s services since I was 3, both as a client in therapy and in other programs. In recent years, I have…