Columns

Coming to Grips with the Reality of Lost Joy

Being born with SMA put me at a severe physical disadvantage right off the bat. Most tasks requiring physical strength were off the table from day one, so I rarely had to deal with loss. For the first 18 years of my life, my disease’s progression was also…

Finding Support from Special Spaces

Several years ago, an organization known as “Special Spaces” contacted us because someone nominated us for their service. The organization performs a complete bedroom makeover for kids with cancer, heart conditions, tumors, and other illnesses. Ella was nominated and chosen for a bedroom makeover.

Adventures in the Big Apple (Part 2)

Last week, I wrote mostly about my trip to New York City, and how my parents and I managed to drive through rush-hour traffic in Times Square. Once we made it into the heart of the city, plenty more adventures were to be had that…

Waiting for the Sun to Rise

Those of you who’ve followed my column for a while know I try to be honest about what I’m going through. I don’t pretend my life is perfect for many reasons, one being that … it isn’t. As nice as it is to curate a “life”…

The Never-ending Quest to Gain Weight

Although Mother Nature seems to have other plans lately, the days crossed off our calendars have us inching closer and closer to summer. Ah, yes, summertime, when the weather is fine and everyone feels extra self-conscious about their “summer bods.” Achieving that “perfect” beach body is at the…

A Message for Us

An envelope covered in hearts and addressed to “Mom and Dad.” This envelope was kept secret for days, but there were hints that it was coming. Ella worked on its contents for days, making the perfect gift for her parents. She covered her project…

Adventures in the Big Apple (Part 1)

Before I go any further with this column, let me go ahead and get this out of the way: My parents are awesome, and I saw “Hamilton” on Broadway with my mom last week. Go ahead and throw your virtual pitchforks at me…