It is April and cold in New York where I visited with my dear friend, Rachel. We met in high school in New City, she from Brooklyn and I from Queens. We had not seen each other in well over a year, maybe a year and a half and it has been a blur, a long blur between that first ultrasound last spring revealing my baby’s genetic defects and here, now, eight months after my daughter’s death. It is springtime, though the leaves are still mostly bare. I went to Rachel’s parents’ house as I had dozens of times in the years of our friendship, even going to the finished basement today where we had watched movies and hung out as teenagers and young adults. I saw her two beautiful sons, and her sweet husband. I think that Rachel wouldn’t mind if I said that we are late bloomers, coming to our fulfilling married lives later, in our late thirties and early forties.
When I told Rachel that I was going to launch this blog to support mothers searching for something in the middle of the night to comfort them, she called me “Brave.” I don’t feel brave, but I am going to overcome my fear of technology (I just got an iPhone this week) and set up a Twitter account and do this to honor my daughter’s life, and to offer some words to someone out there who has just heard these words: “trisomy 18” or “trisomy 13” or many other “diagnoses” that aren’t exactly diagnoses.
In March of 2014 it felt as if I was thrown into another galaxy of new language, fatally ill unborn children, neonatologists, pediatric hospice, funerals for tiny babies. As with most things, there was no map, there were no directions as to the next steps. I didn’t know how to maneuver and negotiate this rocky terrain while the pregnancy hormones surged and my body prepared to nurse and nurture its baby.
I couldn’t sleep so I would look things up on Google. As an academic I can’t call this research, but it was a way of finding information. I was looking for someone to comfort me, to say something reasonable or poetic, to tell me that I would be okay, that my baby would be okay, that my marriage and family would survive this. I found blogs about Jesus and faith and asking for miracles. I found photos of newborn funerals. I even found a new virtual friend, Lakshmi, who birthed her son in April of 2014. He lived a few days. What I didn’t find was a beautiful essay or a friendly perspective on the choices I had to make such as life support or no life support for a newborn.
So here, Dear Reader, I wish you weren’t reading my words. I wish you didn’t know this pain, this path, but I have traveled across this river rowing my boat mostly alone, guided by the love soaring out of my heart for this unborn child. I carried my daughter to term, even though I am pro-choice politically, dealing with people’s words, some comforting, but many hurtful or anxiety- provoking. I go to a church where my daughter is hardly acknowledged. My mother’s family barely acknowledged my pregnancy or my daughter’s life. My husband pulled away from me and my body during the pregnancy and post-partum period because he was trying to protect himself from inevitable pain. It hurts. It stinks. There is no easy way around this. I walked through each step allowing myself to feel and process my emotions moment by moment. I thought I would lose my mind. I thought I would die from my grief. I worried about my two-year old son who would not get to have his sister for long.
We are all still here. In our grief we walk forward, and though I walked much of this path alone, I had enormous support. There are some amazing people who surrounded me, prayed for me, loved me, blessed me. I have an incredible therapist who gave me tough love and compassion, who sent emails at all hours of the night to help me process my soul contract with my daughter. I found Isaiah’s Promise, an amazing non-profit that supports parents choosing to carry fatally-ill children to term. They sent blankets and gifts for Mary Rose. The only things she used in her one hour of life were two blankets from those sweet volunteers. I had an amazing midwife and doula, and even a birth artist, walk this path with me and surround me with unconditional love as I maneuvered through the medical system to find the right place to birth, the right way to hold the sacred space that was Mary Rose. I hope that every woman going through such a traumatic pregnancy has people to support and love her through the pregnancy and grieving process.
My Facebook feed today has pictures of siblings because it is National Sibling Day. There are beautiful living babies, and there are beautiful babies who died of trisomy 18, two friends have three trisomy babies. I love the living babies even though seeing their faces still stings just a little bit. I love the healthy unborn daughter of our friends. And I love the angel babies who are present with us in a different form, from another dimension, our children still.
I told my friend, Rachel, about the pain, about society’s inability to honor death, to stay in the space of death and to hold us, the bereaved parents. I will hold that space for your dying babies, and for your grief as you walk this path, and together we can transmute this pain into healing energy as Sandra Ingerman has taught us. Together we can embrace the lives of our children and their deaths as we make our society more friendly to infant losses, because we all need friends. Not just far-away abstract prayers, but hugs, kisses, cards, flowers, tissue boxes and moments of shared tears.
It is my intention that this blog be a space of healing for you, as it is for me. I honor my Mary Rose, my pregnancy, my path, and I honor your loved ones too. This springtime I don’t feel mocked as I did last year when I knew my baby would die. The daffodils and crocuses are popping up and I too am bearing fruit. My daughter’s life counts among my children. I have two children, one on Earth and one on the other side of the veil, and I am blessed.
April 10, 2015