Columns

“I’m sorry you have SMA,” Lindsay said to Ella. “Me too,” I echoed. Ella’s head moved to the side a bit as she looked at us and said, “I know.” Ella is becoming increasingly frustrated with having SMA. She has…

To the average person who only visits in the event of an emergency, it may seem like hospitals have every kind of medical equipment imaginable. Even the run-down ones still have IV tubes, operating tools for major surgeries, vaccines, and a whole lot of mediocre cafeteria food.

True to my word, I joined a dating site this week. And by this week, I mean the day I wrote this column, since I’ve been putting it off all week. But I did it! Which means I can tell my therapist on Tuesday that, yes,…

In promising to be as open and honest with you at all times, I must preface this column by telling you I find myself in a season of struggle right now. Life as I know it is messy. It’s chaotic and out of balance and, at times, downright ugly. A…

Bathing suits, sunscreen, towels, and water. The key ingredients for some summertime fun. Almost all kids love the water and Ella’s no different. We all know the feeling of floating, yet for Ella it represents a sense of freedom — freedom from the constraints…

Last week I wrote about the different perspectives within the SMA community toward Spinraza treatment, with a brief summary of where I stood on the issue. As it turns out, the day after that column, my family and I found out that Medicaid had approved…

I went to therapy this week for the first time in, get this — 14 months. I talked about loneliness; a familiar creature, at least to me. I’ve always felt its dark shadow, heavy and suffocating — even as a seventh-grader, during what…

I don’t know about you, but this time of the year always has me daydreaming of some sort of tropical getaway complete with life-changing excursions and the ability to immerse oneself in new cultures and traditions. At heart, I’m consumed by wanderlust. I love seeking new adventures and exploring all…

Children engage in all kinds of play throughout the day, from quiet play to rambunctious play. Ella is no different, although her terms of engagement can sometimes be different from your typically developing child. When she goes to the park, she races…

December 23, 2016 was a big day for my family and me. Not only did my sister go into labor with she and her husband’s first child on this day, but it also was the day it was announced that the first FDA-approved treatment for spinal muscular…