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Half-heart, Whole Body: Part Two, B-R-A-I-N-S

Recently, at the behest of our cardiologist, we met with a neuropsychologist who administered a great many tests and even called our son’s teacher for an interview. There was no recent trigger for this visit, other than my intense interest in the “Whole Body” health care approach to CHD and our recent trip to the Single Ventricle Survivorship clinic at Children’s Hospital of Philadelphia. The field of neuroscience is advancing rapidly, and the leading pediatric cardiologists are realizing that you can’t put a body on life-support multiple times during a… Read more Half-heart, Whole Body: Part Two, B-R-A-I-N-S

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

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

@40 ~ things I’ve learned and am still learning

In fourteen days, I will be forty. Here are forty little nuggets of knowledge I’ve picked up over the past four decades. Of course these are mine and are not intended for everyone . . . which leads to the first item on my list: Not everyone will like you, and that’s ok that’s GOOD! I don’t WANT everyone to like me because that would mean I was being who they want to see and not being myself. Authenticity is more rewarding than adulation. Revulsion is the undercurrent of both derision and pity.… Read more @40 ~ things I’ve learned and am still learning

Whatever you Say

An early draft of my first book about my son’s several heart surgeries, included a chapter of upsetting things people said to me. These comments might be seen as microagression, or I may have just been hypersensitive.  My friends whose children are like my son loved that part. People who hadn’t lived through a similar experience were confused. One of those friends asked, “What can we say?” That question led to a list of supportive things to say and do. Many people told me that was helpful. Since then, however, I’ve seen a ton of blogs… Read more Whatever you Say

A Day In The Life

Thursday, February 20, 2014: 4:30 am: Woke up from a dream that began with me taking graduate classes in a Safeway store on Easter, getting into my car to drive home, and having no breaks, despite pulling the emergency brake backward. 4:32 am: Fell back asleep. 6:20 am: Silently cursed my cell phone/alarm clock as I stabbed the snooze button 6:29 am: When the second alarm goes off,¬†whine to Sunny Morning Jim who is already showered and dressed that I hate mornings . . . after 22 years, he kind… Read more A Day In The Life

Good-bye Good Friend

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