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Tag: hypoplastic right heart

Eleven

I wrote this on Facebook tonight. What a blessing it is to forget. Eleven years ago right now, I was drifting off on my very first overnight in a hospital, 22 hours later I would have a living child. 34 hours later we would chose for him: life or death with no guarantees of the former and plenty of opportunity for the latter. Eleven years ago, at this moment, on a Sunday night, I fell asleep on the precipice of the most precarious fall and meteoric bounce a mother could… Read more Eleven

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

Memories: Why I Can’t Love Mothers Day

I’m going to come right out and say it – Mothers Day is not my favorite holiday.  It has absolutely nothing to do with the holiday itself, and I don’t resent anyone else enjoying it. It’s just hard for me.  Sorry, Mothers’ Day, it’s not you, it’s me and my insanely powerful memory. I remember the birth dates of most of my fifth grade classmates.  Don’t ask me why; I don’t know.  They just stick.  I call it the Ken Jennings gene, and I’ve got it bad.  I remember the… Read more Memories: Why I Can’t Love Mothers Day