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Category: CHD (Congenital Heart Disease)

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

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