S/he was perfect, just not breathing. These words always catch my attention when I'm reading other people's stories. I always draw up short, realizing that I don't say that about Henry. I don't say he was perfect, instead I lead off with what was wrong.
Maybe it is the need to respond to the space left after you say, "My baby died," to answer the question that statement raises, or my own need to tell about what I've been through, or my inability to capture Henry's spirit in mere words. I tend to rely on an outline of his story, the key events in a neat package for those times when small talk questions lead to the uncomfortable ground of a dead baby.
The Story I Tell
Henry was diagnosed before birth with a small hole in heart (a VSD). We thought it would close up on it's own over time. We learned shortly after he was born that he had Down syndrome and that he had a full AV canal defect. He needed oxygen and was taken away to the NICU at another hospital before I had a chance to hold him and barely got to see him. I couldn't get to him for two days. He spent 9 days in the NICU and came home on oxygen. He had open heart surgery at 3 months. He recovered normally from surgery and came home off oxygen for the first time. We were excited to have him healthy!
Two weeks later he seemed to have a cold. We went to the pediatrician, who immediately put him on oxygen and called an ambulance. As soon as we got to the hospital, Henry was put on a ventilator. Two days later he was transferred back to Children's Hospital in Boston. We were there for three months, during which time he was on and off the ventilator, underwent a lung biopsy and two cardiac catheterizations, and a million other tests. We learned that he had an exceptionally thick cardiac septum, pulmonary hypertension, and another pulmonary issue. He almost died in October from an infection, but pulled through. In December, he was finally discharged on oxygen and a daunting med schedule. He looked good and we were excited to bring him home, but two days later he got sick and ended up in the hospital again. He was put on a ventilator and nitric oxide. He crashed three times; the third time they could not bring him back. I was there, holding his little foot and singing to him when he died.
What I Wish I Would Say
When I first held Henry, I felt utterly right and I relaxed for the first time since the doctor first came into my recovery room with a grave face.
In the early months of Henry’s life I would lie in the early morning resting with him on my chest. It was perhaps the most profound peace I have ever felt.
Henry had a smile that lit up his entire body. So many times that smiled rescued me from fear, exhaustion, and despair.
Henry amazed me: he kept smiling, kept doing new things, remained strong, despite so many days sedated. He was so intent, so determined the way he focused on faces of everyone who held him, the way he worked at getting his hand in his mouth, the way he kicked at his chime toy.
I love Henry with a depth and an intensity I could not imagine before he came—and I miss him with an equal depth and intensity.