On top of mourning the death of my daughter, I am mourning the loss of the pregnancy and birth I had once dreamed of. I lost the opportunity to announce my pregnancy the way I wanted. I told some people at work earlier than I wanted and in a way I never imagined. I sat in my car in the parking lot of the Maternal Fetal Medicine office, calling my practice manager to tell her I couldn’t work the next day because I was having a CVS. I cut off congratulations. You get only one opportunity to announce your first pregnancy. I learned to tell people in two parts. When I went to my offices I would tell them in the morning that I was pregnant and bask in the congratulations all morning. At lunch I would tell them that my baby had Down Syndrome. I wanted to be open about my baby’s diagnosis and wanted to explain that there was a high risk for loss. It was like saying, “I’m pregnant, but don’t be too excited yet.” I gave up the simple reassurances. You’re worried about miscarriage? You’re past 13 weeks, that’s so unlikely! Not for me. You’re 24 weeks- your baby is viable! Maybe, maybe not. I gave up a genuine smile when people asked if I was pregnant. I gave up my baby shower. I lost the labor I had pictured. We had moved into a new house that has an endless supply of hot water. I pictured laboring in that shower. I was with women in labor and catching their babies, thinking this won’t be me. I won’t be delivering my baby in the labor room; I won’t have minutes and minutes of skin to skin; I won’t be breastfeeding right away. I gave up announcing my baby had Down Syndrome the way I wanted.
I am also mourning the loss of my future. I will never be the same. I had so many visions. I can picture myself on my couch holding a baby, in the middle of the night struggling to breastfeed, schlepping the baby carrier through a parking lot to a therapy appointment. I’ve not only lost my child but I’ve lost these fantasies. I thought I had gotten used to the idea of losing fantasies. When we found out our baby had Down Syndrome, I had to give up many of my ideas of how life would be. I grieved, grieved the loss of the child I thought I would have and began to accept the new child I knew I would have. I’m in an almost similar place now. I’m grieving the loss of the child I thought I would have, but how do I accept the absence of a child I thought I should have. A friend once made the comment, “Many people look at children with Down Syndrome with pity. I wonder if you’ll look at children with Down Syndrome with longing?” How true that is.
I took it for granted before- the idea of raising a child with Down Syndrome. I was reading in the book Bloom by Kelle Hampton about how Kelle was told her daughter had Down Syndrome shortly after birth. She mentions a hospital worker who told her tearfully that she had lost her daughter with Down Syndrome many years before. I wondered how she lost her daughter and assumed it was decades ago. I assumed that medicine has come too far for that to happen now. As long as they survive the pregnancy, children with Down Syndrome live, right? That’s what I thought at 13 weeks- at least my baby can live. I would make a good parent to a child with special needs. But I’ve lost the fantasy of being that parent, of being a parent. I’ve lost my baby and I’ve lost a piece of me.