equations

This month's guest writer D. describes herself this way, "I fit into a unique niche that is becoming more prevalent; I knew my baby would die before she was born.  When I was twenty-three weeks pregnant, she was diagnosed with Trisomy 13 and we were told she may be stillborn or live minutes, hours, or the average of 2.5 days which is exactly what she gave us." D. blogs about raising her toddler daughter, grieving her second daughter, and the life that occurs in between at Still Playing School. Please welcome D. and join the conversation. --Angie

As we anticipated our second daughter's death and soon after we lost her, other parents would approach me with lowered eyes to start a conversation about loss by saying, "It's not anything like what you've been through, but we had an early miscarriage..."

My response before they can share the intimate and welcomed details about their child is to explain that there need not be any quantifiers.  This is your baby who you can't have with you each day.  It's a loss, a death, someone to grieve, whether you named, held, nursed your baby or not.

We learned when we were five months pregnant that Violet wouldn't live long after she was born, if she was born alive at all. Through the power of the internet, I found another mother 5,000 miles away whose beautiful daughter was also named Violet. Our Violets had the exact same rare chromosome abnormality diagnosis. Her Violet's middle name was also the same as my older daugther's first name. I got chills and emailed her.

While the coincidences that allowed me to reach out to her were uncanny, the differences were stark.  Her Violet had been still born.  They didn't learn of her diagnosis until after she was gone. Months later, when our Violet was born, she lived 2.5 days.

"I can't imagine knowing you were going to lose her," she sympathized.

"I can't imagine not knowing," I replied.

When we received Violet's diagnosis, we stopped the typical preparations, which was so unnatural.  My hormones urged me to buy diapers, set out the bassinet, and wash baby clothes as my belly swelled with her.  Yet we prepared for her arrival in other ways, meeting with funeral directors, gathering mementos to create, and planning with the palliative care team at our hospital.

We stopped decorating a nursery.

My friend returned to a ready and waiting home where her child would never sleep, to clothes she would never wear.  I cried when I saw the picture of her at her baby shower with pink clothes piled up beside her.

We hurt for own unique children, yet we mourned for each other as well and we felt those differences so deeply.

We might wonder if it is it better to have a fatal prenatal diagnosis or be caught off guard.

Is it more painful to lose a baby or a child at age 2, 5, 10?

Can we compare the shock of a car accident to the way your hope slowly trickles away as your child faces a terminal illness?

We can't create equations to compare the pain of losing a child.  There are no greater than or less than signs.  There are knowns and unknowns, but both have the same amount of pain attached to them.  The loss of a dream for your future, but also the loss of a very real person.

Did you know before your baby or babies were born that they may not live? Have you thought about whether you would have liked to know your child or children's fate if you didn't know, or not know, if you did? If you didn't know your child would die, would you have liked to know? Or if you knew, do you imagine whether it would have been easier not to know? Has the death of your child or children changed the way you will approach or have approached subsequent pregnancies in terms of prenatal testing?