My grief journey started well before Mabel was born. I grieved the original vision I had of a typical baby when I learned she had Down Syndrome. I grieved the potential risk of miscarriage and stillbirth that came with that diagnosis. I began grieving the death of my child when we learned it was a real possibility at 27 weeks. My grief wander high and low as I crept week by week, my baby still alive inside me and then hit hit full force in the days, weeks and months after she was born and died shortly after.
“Down Syndrome children are born without malice,” one of them told me and I began to celebrate the new vision of the child I was going to have.
“You need to meet with this doctor,” another told me, encouraging me to seek out a well respected neonatologist on the medical ethics board. With that meeting I began to plan how to best help my baby.
She didn’t put me on bedrest, like many would have done, simply because no one knew what to do to help my baby. “Exercise,” she said, “is good.” She gave me a little sanity.
She came with cabbage leaves and breast pads to soothe the raging milk that kept reminding me there was no baby. She put me on a sitz bath, reminding me that my body needed to be cared for too.
“Parents aren’t supposed to bury their children,” she cried unabashedly, sitting in my bed with me in the days after.
My OB team- my midwives, my doctor- was and still is a huge support for me. It’s national Midwifery Week. So it’s well timed that today I thank my midwives (and my M.D., my Midwife Doctor).