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 … 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 … 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 … More Whatever you Say

Can of Worms

The first thing I wrote after learning, on December 30, 2002, that my unborn baby faced a high likelihood of death at birth was an email to work, explaining why I wasn’t coming in the next day.  Over the coming months I wrote several emails to family and friends, some of them from a room … More Can of Worms

It Was a Monday

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 other, just briefly, before I asked Liam to tell us what today is.  “It is the last Saturday of the year, and the last day … More It Was a Monday

Day Thirteen: A lighter shade of pale, or when you’re glad it’s a virus

Liam requested chicken noodle soup for dinner.  Liam doesn’t like soup.  Liam came to dinner holding his stomach and didn’t eat his soup.  Liam went to bed at 6:00 pm with the giant popcorn bowl, a kiss, and a temperature check.  His average body temperature is barely 97 degrees on a good day. He’s about … More Day Thirteen: A lighter shade of pale, or when you’re glad it’s a virus

My Friend George

My friend George died on April 29th. I wrote most of this post on May 1st, but it seemed too soon.  I left it here in my draft folder and waited, wondering when would be a good time to post it, and there is no good time.  Yesterday, Sept. 10th, my friend Pam died suddenly.  … More My Friend George

Autobiography of a Face; The Shape of My Heart

In 2010, when I was writing Heart Warriors, I read Lucy Grealy’s book Autobiography of a Face.  I read it after first reading Ann Patchett’s tragic book Truth & Beauty,written about Grealy.  Honestly, the good versus  mediocre memoirs I’ve read are fairly equal with a few being downright bad.  These two books, however, were incredibly … More Autobiography of a Face; The Shape of My Heart