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Tuesday Night Roller Coaster.
Tonight was an emotional roller coaster, and it started with Garth Brooks. “Much Too Young (To Feel This Damn Old)” came on, and I was doing fine singing along until the line, “All my cards are on the table with no ace left in the hole, I’m much too young to feel this damn old.”…
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Letting Go
As my evaluation dates grow closer, I keep thinking about being sick enough, and whether I even know what that means. Medically, it isn’t my choice whether I’m sick enough; that decision is above my pay grade. It is however, my choice whether I feel sick enough to agree to being listed, and to accept…
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CHD Awareness?
Awareness matters, but so does how it is framed. Some imagery meant to support parents can unintentionally teach children with congenital heart disease that they are a burden.
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Not An If…
On the drive home from my most recent doctor appointment, I didn’t feel dramatic or panicked. I felt quiet. The kind of quiet that settles in when something has shifted but hasn’t fully announced itself yet. I drove, followed familiar roads, and let the conversation replay in my head. This time, when he said the…
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Listen to Your Body
For as long as I can remember, people have told me to listen to my body. It was practically the soundtrack of my childhood. I heard it from nurses, from my mother, and most recently from my cardiologist, who said it with the same energy as someone offering ancient, mystical wisdom. Going to a high…
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Tightrope. (You don’t look sick…)
Every day, I walk an invisible tightrope. Step by step, I inch forward, steadying myself, fully aware of the drop below. Chin up. Smile. Do not let the audience see the tremor in my hands or the heaviness in my bones. They expect composure, strength, even grace in this precarious balancing act. So I play…
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Capes And Roller Skates 