





Today is our middle daughter Sophie's birthday. She would be 13 years old.
Sophie was born with a heart condition called aortic stenosis, i.e. a malformed aortic valve. It was detected when she was one week old. When she was 10 days old, she underwent valvuloplasty, a procedure much like angioplasty where a balloon is inflated in the heart valve to enlarge the opening. Two different pediatric cardiologists told us that Sophie was a good candidate for this procedure and that the chance of mortality was less than 1%. In fact, no child had ever died during the procedure at our hospital. In a scenario akin to jumping out of the way of an oncoming car and getting hit by a bus, in the process of repairing her aortic valve Sophie's heart was accidentally punctured in a different place and she died. It was nobody's fault, there was no negligence involved. It simply happened.
Sophie was born at home on the first day of spring. It was a perfect spring day, so warm that we had the windows open. The crocuses were in riotous bloom in our yard. I went into labor that morning, but felt compelled to do a number of errands before the birth. Therefore I was out and about through most of my labor. I'd say to Ed, "Pull the car over! I have to walk!!" and get out and walk up and down the street until the contraction had passed. (Just last year, an acquaintance of mine whom I seldom see, reminded me that
she had seen me in a store that day looking like I was about to give birth, which in fact, I was.)
Our last stop was to pick up the midwife, who happens to be my sister Meg. We made it home, barely. Sophie was born a scant hour later.
I am extremely grateful that we chose to birth Sophie at home. Had she been born in the hospital, her heart condition would probably have been detected earlier and she may never have been at home. As it was, she got to be a normal newborn baby for an entire week. We spent that week saying hello, before all the medical stuff kicked in and we ultimately had to say goodbye.
After she died, driving home that evening, my husband and I realized that
both of us had been having thoughts of Sophie's death all through those 10 days, even before we knew she had a heart defect. They were thoughts that would just pop into our heads, seemingly from out of the blue. I believe those thoughts were coming from Sophie; she knew she wasn't staying very long and was preparing us for her departure.
There were other signs. Sophie didn't have that new baby smell; I noticed it right away. I would bury my nose in her hair, and ... nothing. She lost her umbilical cord stump really soon, within a couple of days of birth, making it possible for her big sister to take a bath with her -- something she had looked forward to. There was one evening when Ed was holding her out in his hands, looking at her face, and she lifted her head from his hand and puckered up her lips to him. He kissed her, then looked at me in amazement saying, "Did you just see that?" The night before she went to the hospital, I had her on my lap and she opened her eyes and stared at my face with the most peaceful and loving look. For the longest time she just held my eyes with hers.
And my 15 year old nephew had his mom bring him to see Sophie in the hospital the night before she died, because he had had a dream about her death.
While the doctors were trying to save her life, I briefly fell asleep and had a dream/vision of a large circle of people -- who I understood to be "old ones" who were embracing Sophie. I woke up and Ed said, "If she's dying, I want to be with her!" and we ran to the catheterization lab. That's when they let us come in to say goodbye.
In retrospect, we were better prepared for Sophie's death than the medical staff was. When they allowed us into the cath lab after they had tried emergency open heart surgery, a nurse friend that was with us commented that everyone looked shell-shocked. Much later we heard that the lead cardiologist had cried, and nobody had ever seen him cry before. Somebody took her hand and footprints for us, and much later I noticed that there were tear stains on them.
Both cardiologists came to her memorial service.
Conventional wisdom says that losing a child is the worst thing a parent can experience, and conventional wisdom is right. For that first year I felt like my heart had been torn out, thrown on the ground, and stomped on. That's raw grief.
I have sweet memories too, mostly of the love with which friends and family enveloped us. My brother who flew in right away from somewhere out west and stayed to take care of us for a few days. A friend who came to our house that evening, as soon as she heard. The 200+ people who came to her service. My brother-in-law, whose band had their first ever gig the day after Sophie died, and he broke down on stage singing "You Are My Sunshine" for Sophie. (He just told me that story last night.) Neighbors who brought us meals, and one in particular, Fay, who became my very good friend. And the few who still remember and call us every year on this anniversary.
For me, it was also a profoundly spiritual experience. I think of Sophie many times in a day, every day. Sometimes I feel very bereft. Sometimes I wonder who she is, who she would be. Most of the time, her death feels like part of the fabric of my life, and I wouldn't change it.
I have a sense that she checks up on us. Sometimes I find little gifts. Our older daughter used to say that Sophie came and played with her. Two years after Sophie's death we had another little girl, making the circle feel complete again.
Life is a mystery and a blessing.