What's in a Name?

For the last 17 years, the first Saturday in December has been set aside for a remembrance service held by the Bereaved Parent Group of Madison. The first year after Sophie's death we simply attended. Then we started contributing a song to the service: The Water Lily by Australian poet Henry Lawson, set to music by Priscilla Herdmann. We've missed just one service since Sophie died, the year I ended up in the hospital with pulmonary embolism (yuck.) I love it; it's a chance to catch up with friends whom we know only in this context and see once a year. People who speak the same language we do, so to speak. Members of the same club.

The most powerful part of the evening is when somebody reads off all of the babies' names. To hear someone else say your baby's name means so much. Last year, the people compiling the list made a mistake and got Sophie's middle name wrong, and I felt terrible. This year I checked the list to make sure it was correct. I hope I didn't seem too obnoxious.

Today brought a strange coincidence: Ed was at work and Sophie's cardiologist came in. We run into him from time to time around town, but today of all days? The world works in mysterious ways. And another year is past.

Book Review: The Wet Engine

A few years ago my brother sent me this sweet little book, The Wet Engine: Exploring the Mad Wild Miracle of the Heart, by Brian Doyle. First, a few words about my brother Paul. He's an extremely funny and smart guy, wielding sarcasm and cynicism like a finely honed rapier. In our house there is an oft-repeated quote of his that has become something of a mantra for Sparkly Seacow: "Sarcasm in a child is an ugly thing", delivered dripping with sarcasm of course. Anyway, underneath Paul's oh so tough exterior is (and always has been) an incredible well of compassion for all sentient beings and for the natural environment. (However he doesn't suffer human fools gladly.) In short, he's a marshmallow.

Anyway, receiving this little gem of a book meant a great deal to me. Paul dropped everything and flew across the country to stay with me when our daughter Sophie died. He has been consistently attuned to my loss, and the gift of The Wet Engine was one more example of this.

Brian Doyle had twin sons. One was born healthy and whole, while the other one, Liam, had just three chambers in his heart and underwent two open heart surgeries as an infant to make his heart functional. This experience inspired Doyle to write an ode to this very essential organ, to all that it means to the human psyche, and to the doctors that saved his son and thousands of other children every year. Doyle's prose reads like poetry, by turns poignant, informative, and funny.

I've read it twice now. I will admit, it was a bittersweet read for me. Liam survived, in all likelihood will live into adulthood, and grow to be an old man. My daughter did not. But Doyle's purpose in this book isn't to celebrate a victory at the expense of all the other children who die of congenital heart defects. In fact, this book is so loving, sometimes I felt as if he was speaking directly to me and my bereavement. I often think that Sophie's death -- whatever situation led to her death -- resulted in new learning that saved the lives of many babies who came after her. Perhaps even Liam's life.

Doyle deftly interweaves his memoir with facts about the heart, some startling and some sobering. Here is a passage:

In America these days one woman dies every minute of every day from a failed heart. More women die of failed hearts than men. Failed hearts kill more women and men than the next seven causes of death combined. The highest rate of death by failed heart is in Utah. The lowest rate is in Mississippi. More than four hundred babies are born every day with flawed hearts. Eight of every thousand babies are born with flawed hearts. One percent of all babies born all over the world are born with flawed hearts. Twenty percent of all babies born with flawed hearts will die before their first birthday.

The Wet Engine is a quick read, though you might want to savor it. It's a lovely book. Highly recommended.

(Just a personal note for anyone who knows my family -- or is my family -- and is reading this. The warm embrace of family and friends, the way that Sophie has been integrated into everyone's lives even though she is not physically present, fills me with love and awe. You are amazing.)

Another Birthday

Sophie Olivia Grindrod-Feeny, March 21-31, 1994

All of these photos were taken within the first hour after her birth. We had no idea that she had a heart problem until she was one week old. It was a blessed week, just enjoying our beautiful new daughter/sister. It's very hard to believe that she would be 15 today. I miss her.

Remembering

Ed and I have a once-a-year musical gig together, at the local bereaved Parent Support Group's annual Remembrance Service. We play and sing a song by Australian poet Henry Lawson, set to music by folksinger Priscilla Herdman, called The Waterlily. It's a sad and beautiful song, about a mother dreaming of her child who has died.

There have been 15 of these services since our baby Sophie died; we've been to all but one (the year I ended up in the hospital a few years back.) We've been doing this song for perhaps the last 9 or 10 years. It should become easier, but I am finding that in the last couple of years I have had a harder time getting through the song without crying. I suspect it is because there are relatively few times that I devote to simply thinking about her, and this is one of them.

I consider the night of the service to be sacred. Other parents I know have drifted away from it, no longer feeling the need to be there, and that's OK. I suspect Ed might too, if I wasn't so compelled to go. But there is a point in the service where all of the names of the babies are read aloud, and hearing Sophie's name spoken by someone else is a gift.

One mother has made it her project to put together memory quilts, with squares that families have contributed. This is the square I made for Sophie, in the year after she died. The little bunny was drawn by our eldest daughter, who was 5 when her sister died. Our younger daughter came later.
I welcome these moments of remembering.

(Thanks to Barbara H. for taking the picture and emailing it to me.)

Remembering Sophie

Last Saturday night was an annual Holiday Remembrance Service, organized by the local bereaved parent support group. We've gone every year but one, and for many years Mr. Ether and I have participated in the service by playing/singing the lovely song The Water Lily by Priscilla Herdman. Our daughter Sophie would be 13 now, which seems hard to believe. In my very busy life I have a hard time finding spare moments for reflection, so I always welcome the night of the service. This year was extra special, because for the first time my sister Meg, who was an attending midwife at Sophie's birth and actually caught her when she emerged, was in town and came to the service. The service is also a time to reconnect with people who we rarely see any other time. It may seem strange to others that we have a circle of friends -- and I do consider them friends -- with whom our connection is based on having had children die. But I cherish those connections, and I cherish this annual event.