I sat at my quarterly statewide meeting of the American College of Nurse Midwives, surrounded by a mix of midwives I’ve known for years and many new faces. Some I see regularly in my day-to-day life; some I only see at these meetings. A few knew what had happened; many did not. The meetings are a chance for us to catch up socially, discuss political action items and learn something. I had decided earlier that day that I was going to speak when it came to announcements from the members.
When the time came, my heart pounded in my chest as I looked at the thirty or so faces staring at me. As I began to talk, the scraping of plastic forks and knives against the paper plates filled with potlucked food ceased. My voice steadied as I began speaking the words I had rehearsed in the car on my drive to the meeting.
“For those who don’t know I had my daughter Mabel in February. From thirteen weeks we knew that she had Down Syndrome. At twenty-seven weeks I was diagnosed with oligohydramnios, due to her failing kidneys. At thirty-six weeks I went in to labor. She lived for six hours and died of pulmonary hypoplasia. I spent my pregnancy preparing for a baby with Down Syndrome and learned of some resources that I didn’t know of otherwise and thought they would be helpful to us as providers…” I went on to describe the resources and gave a handout. I ended with “I don’t know what it’s like to raise a child with Down Syndrome, but I know what it’s like to be pregnant with one. And now I know what it is like to lose a baby. So if anyone has any questions about Down Syndrome or loss, I’d be happy to talk more.”
I told her story. I told my story. Stories intertwined liked the ropey veins and artery of her umbilical cord, literally connecting her life with mine.
I was well received; several people came up afterwards to give me condolences. It was empowering to tell Mabel’s story. I hope to do more of it.
It was a start. Our stories are unfinished. I can see how the next few chapters may unfold. Mabel will speak her story through me, teaching providers in the medical community about Down Syndrome and about perinatal loss. Together we will help create more compassionate care. Together Mabel and I will keep writing our story.
One of the midwives, familiar with Mabel’s story, held the handout and said in front of the group, “Are those Mabel’s feet?” referring to the small photo I had put on the paper. Yes. Those are her feet. Take them home with you.