I’m a glass-half-full kind of girl. It’s usually not difficult for me to look on the bright side of life. Recently, I had one of those days where everything felt right. We are on top of my 2-year-old son Alfie’s therapies, he is loving day care, the equipment he…
Columns
My kids return to school next week. As always, there is so much to do to get ready. In addition to back-to-school shopping and open house, I have to ensure Max, Rowen, and Charlie, my sons with Duchenne muscular dystrophy (Â鶹Éç), will be successful and that their school is…
A hostess I am not! Planning a child’s birthday party or hosting a team meal is the extent of my party planning skills. I am usually introverted and quiet, and only a few people will hear me talk much. Writing is my favorite way of communicating, and it has led…
Columns
To Care Is to Share (Knowledge)
This week, I wanted to visit the reason I started writing this column. However, to describe that rationale, I need to revisit the moments soon after I received my diagnosis. I was diagnosed with limb-girdle muscular dystrophy (LGMD) in the late 2000s. I remember my primary physician calling…
My 2-year-old son, Alfie, lives with LAMA2-related muscular dystrophy. Obviously, it is hard, stressful, and heartbreaking to raise a child with a disability. I wouldn’t wish this condition upon anyone. From his premature birth to his diagnosis, the experience has been a huge learning curve for us, to say…
As I noted in previous columns, everyone is different. You are who the other is not. This philosophy also applies to the life experiences that lead to a diagnosis. As a child, I was often referred to as clumsy. While I vehemently denied it in my mind, it…
Last week, I traveled to the headquarters of my employer, Bionews, the publisher of Muscular Dystrophy News Today. The trip took me from Newport Beach, in Southern California, to Pensacola, in the Florida Panhandle. While it was an interesting experience, it wasn’t without its challenges, especially with Duchenne…
Most weeks, I toss around column ideas with my friends and family, asking them for advice on what they think could be important or interesting for me to write about. Last week, my husband said, “Umm, how about the fact that you’re heavily pregnant and Alfie is about…
Welcome back to “Hidden Truths.” This week I wanted to move away from the style of my first and second columns and discuss how one of the most basic emotions relates to muscular dystrophy (MD) and other chronic illnesses. Guilt occurs when a person feels regret or shame in response…
I recently started watching a YouTube channel called Yes Theory, which inspires people to “seek discomfort.†The cast of the video blog often go on trips to remote parts of the world, perform on the street, or push their bodies to the limit, all in the spirit of being…
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