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Category: Congenital Heart Defects

An Anniversary Book Excerpt

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I may have mentioned that I got the rights back to my book, Heart Warriors, A Family Faces Congenital Heart Disease. I am almost done with rewriting it to include my journey with post traumatic stress disorder, but that journey is still unfolding. Tonight is an anniversary – the anniversary of my child’s first surgical scar. It’s on his wrist. It’s still there. I sometimes see it at the dinner table. Unlike the scars on his chest or groin, which I never see anymore now that he’s seventeen, the ones… Read more An Anniversary Book Excerpt →

Half-heart, Whole Body: Part One, A Poster Child Retires

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During my first pregnancy my son was diagnosed with congenital heart defects that were “incompatible with life.” Through the following years of multiple open-heart surgeries and other invasive surgical procedures on and around his heart, I was very open about his medical history because I wanted and needed to be understood. I needed people who didn’t know anything about CHD to know about it. I was living through something I never expected when I longed to be a mother. What came of that was a connection with others living the same… Read more Half-heart, Whole Body: Part One, A Poster Child Retires →

Good-bye Good Friend

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Today my friend Jan died.  She was forty-six years old and celebrated a birthday just a couple of weeks ago.  Now, she’s gone. Even before I had a child with severe CHD, I thought death was pervasive in my life, from my dad and friend Mary, to coworkers and former classmates.  I felt I knew more than my quota of loss. Since becoming a heart mom it’s different.  There was a time when every death shook me and reminded me that this family could have been our family. Then my… Read more Good-bye Good Friend →