The inevitable events that led me to write Heart Warriors began on December 30, 2002, the day in my pregnancy when Liam was diagnosed. The earliest drafts were written in 2008 and promptly discarded. I’d never written a book before and didn’t know what I was doing. I joined some writing groups, read a ton of books, and finally started and finished the book very quickly in 2010, the same year I finished graduate school, fundraised for and attended our second Hearts United event, launched the inaugural Congenital Heart Walk,… Read more The Journey to Well →
I have made a commitment to limit how much of Liam’s personal information I share publicly. Because of this I’m trying to balance important and helpful information for those parents… Read more How Far We’ve Come →
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 →
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 →
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 →
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 →
I am not sleeping, so I will write. Tonight (which is now yesterday) at dinner, Liam asked, “Do you know what today is?” and Jim and I looked at each… Read more It Was a Monday →
I strongly believe every one’s happiness is his/her own responsibility. I can’t make anyone happy except myself, and no one can make me happy except me. I hold that standard… Read more It Can’t be Bought →
Amanda Rose Adams 