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The Fault in Our Hearts

I’ve never read The Hunger Games, or The Fault in Our Stars. It’s not that I’m dismissive of young adult (YA) literature, it’s just not my thing. I also don’t read westerns, mysteries, science fiction, or most fantasy,  but I do read the news and couldn’t miss the frenzy over The Fault in Our Stars film and author John Green.  I was curious about the title because I’d read that it was from a Shakespeare play, so I looked it up. The source quote is from Julius Caesar and about… Read more The Fault in Our Hearts

G is for Graduation, H is for Holter

Staying true to not writing about Liam’s personal life, I’m going to do my best to share only my feelings. Sufficed to say, Liam has never, ever liked Holter monitors, a documented historical fact, and it’s not gotten any better. The Holter monitor came back yesterday, it’s like a boomerang. For those not in the know, a Holter monitor is a smallish box that connects to five leads that are attached to the skin over the ribs and sternum, and Liam happens to be allergic to the adhesive in most… Read more G is for Graduation, H is for Holter

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

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