Monthly Archives: May 2015

It’s Not Your Business: A Discussion of Abortion and Neonatal Life Support

free-vector-mothers-silhouette-02-vector_026828_Pregnancy%20(2)I heard the poet Claribel Alegria speak at The Resilience of the Human Spirit Conference in 2006. She said that everything we do is political. During my pregnancy with Mary Rose I recalled her words often. Choosing to carry my daughter to term after testing revealed that she had trisomy 18 disturbed people and my pregnant body became a part of public discourse. Not too many people know that their baby will die while pregnant, and though I am pro-choice politically, I am also a private person who still does not understand why people freely gave me advice on two decisions that most have no experience making: abortion and neonatal life support.

A few Christian friends suggested abortion, and this surprised me. Did it surprise me because they were talking and posting on Facebook about “The Lord?” or was it because I thought that my decision to carry my baby was private? I would never tell my very closest friends what to do with a pregnancy. What made it okay for acquaintances to tell me what to do with my pregnancy? Or for friends to advise my mother after liturgy that abortion was the best choice for me?

It was appropriate for the doctors and genetic counselor to offer me the choice of abortion. When I said no, that was it, probably because I live in the south and Christianity is the mainstream culture here. I know other mothers are pressured into aborting their babies and have a hard time finding doctors who will work with them to carry their pregnancies to term. I know that some parents of trisomy 18 babies can’t find doctors to treat their children because they are deemed “incompatible with life.” It seems that no matter what we do there are challenges. We have to be our own advocates or we will get lost in the system. I did a few things that were not expected. I carried my baby to term, birthed her at home, and did not have her body taken away to a funeral home. I simply refused those options, even though they might have been easier choices.

I can’t imagine that abortion is an easy decision though. There is still a loss. When I was mourning after my baby died, post-partum hormones raging, I knew that some people thought I wouldn’t be going through this if I had terminated my pregnancy. It’s not so simple. I know women who have had abortions and they are still dealing with their choice years later, just as I will always walk my path with the consequences of my choice to birth and bury my newborn.

I was childless for 15 years, not by choice. In that decade and a half I wanted to be pregnant. I wanted a child of my own with every cell of my body. I knew that I could not terminate a pregnancy regardless of the child’s outcomes even when a child was an abstract wish far off in the future. I first felt Mary Rose move in the genetic counselor’s office as she was asking me if I would have an abortion. I firmly stated, “No.” I wished for a child and I had a child. I knew that there would probably be no holidays, no milestones, not much time. Babies with trisomy 18 have a range of possibility. Fifty percent are born still and most die within the first hours, days and weeks. Under 5% live to their first birthdays and most of these are on life support.

My husband and I agreed that we would not terminate the pregnancy and then decided that we did not want life support for our newborn. If our baby could not breathe on her own, could not eat, or suck, we wanted to hold the space to honor her peaceful death. We were making these intense decisions with our neonatologist, midwife and priest and then someone would say “You didn’t have an abortion?” What gave us away? The fact that I was seven, then eight, then nine months pregnant. I had one question: Why is this any of your business?

The decision to carry a child with a fatal illness to term or not, to choose life support for an unborn baby or not, to plan a funeral instead of readying a nursery, these are all private decisions. For those who feel that they should weigh in, let me stop you here. If a couple asks “What should we do?” then it is appropriate to give advice. In our case we never asked anyone for advice, except for our midwife, Mary Rose’s doctors, and our priest. We wanted to be sure that our decisions were ethical, that we were not denying our daughter anything as her parents. But life is life. She would either breathe on her own, or she would not. She would either eat, or not. And in our daughter’s case she did none of these things.

For people who don’t know what to say, say less. The comments I appreciated the most were “I don’t understand what you are going through, but I’m here for you.” That says I love you, but I won’t boss you around. It is somewhat comical the way people dispensed advice. One mother told me “I wouldn’t do anything. Just wait and believe that God will heal your baby. Do you pray? Do you believe in miracles?” That’s a great way to kick a woman already on her knees further down. I believe in miracles, but I also believe in accepting God’s will. I had carried a healthy child to term and I knew that my daughter’s body was not developing normally. If I had listened to this woman what would we have done with Mary Rose’s body? We had already purchased a plot and had a casket for the burial. She was buried within 26 hours of birth. I couldn’t exactly wait to see what would play out when the tests were 99.8% accurate.

The sweet baby, Grace Miriam, whom I mentioned in a previous post has full trisomy 18, spina bifida and hydrocephalus. Most people would have aborted Grace, but her parents, who are devout Catholics, carried Grace to term. She is alive and breathes on her own. Grace has survived surgery on her spine and surgery to place a shunt in her brain. A priest friend told Grace’s father that they should consider their time with Grace as Holy Hours. I am so grateful that our Creator “use[s] the foolish things of this world.” Grace is alive. We see life in the fragmentation of our individual lives, but what about the bigger picture of one, connected, pulsing Universe? How many lives is Grace touching? Why do humans think that one life is more valuable than another?

I think back on my pregnancy with Mary Rose and remember feeling so vulnerable and alone. May I suggest that if your friend or sister or cousin has had a troubling ultrasound or a miscarriage, that you offer her a box of tissues and a cup of tea? A hug. Shared tears. Unless you have ever been “diagnosed” with a pregnancy that is considered fatal, don’t offer advice. You really don’t know what you would do. Even my friend, Miko, whose son, Josh, died as an adult in a car accident agrees that she couldn’t give me advice on the pregnancy. You can’t know until you are standing there, hands on your belly, at the crossroads, feeling your child move, loving her no matter what.

Mother’s Day

IMG_0476Mother’s Day

I remember Mother’s Day one year ago when I was surprised by the intensity of my grief. It had been two months since my unborn daughter, Mary Rose, was diagnosed with a fatal illness. I was almost seven months pregnant. She moved inside me; her motions and limbs were tiny. I remember crying outside sitting on my green metal garden chair. I cried all day because I knew that this would be our only Mother’s Day physically together. People often tell me not to cry because I have a son. I am very grateful for my living child, but he cannot take away the grief of his sister’s fate.

This year is different. I’m just starting to come out of more than a year-long daze of shock and grief. I want to tell every mother whose child is gone through miscarriage or illness or accident, Cry. You have earned the right to cry. Well-meaning people tell us not to show our emotions, but we don’t have to hide the intensity of our path.

My dear friend, Daniela, sent me a present this week. It is a crocheted rose with Mary Rose’s name on the back, and it is the first gift that I have received honoring my daughter that hasn’t sent me into fits of weeping. It still stings to see a joyful, pregnant woman or a newborn girl. Doing family things and witnessing children growing and playing and being alive often still hurts. The first holidays after Mary Rose died were almost unbearable, except I’m still here.

Mother’s Day is a tough holiday. It excludes many people. For women who are infertile and childless it is a reminder of what they do not have. For people whose mothers are on the other side of the veil, there is a void, and for those of us whose children have died, what do we do with this rosy, cheery, pastel holiday? I’ve been thinking of my dear friend Louisa all week. Her mother and only son are on the other side of the veils, yet she meditates and lives her life with a vivacious grace that inspires me.

Louisa and I have both connected with the spirits of our children through prayer and meditation. We feel them close by and know that they are now intercessors, spirit guides and helpers, depending on the language you use. This year I propose that instead of listening to our sad thoughts that we are separate from the ones who have died, let’s think with our hearts. Our children’s souls are intact and if we think with our heart centers, reality shifts from a thinking place of lonely loss to a heart place of loving communion. This year I invite each of you whose children or mothers are not in an earthly body to light a candle and celebrate anyway. It is my great hope that we can celebrate this Mother’s Day with tearful smiles and an understanding that the veil is thin, that our loved ones speak to us and send us messages of love from their heavenly place.

I have been listening to Kari Samuels 28 Days of Angel Meditations this month. When she says Archangel Gabriel, please come, I feel such peace. I choose to say Mary Rose, come, and Louisa chooses to say Colin, come. We are not separate from our children who continue to live through us and with us.

I am married to a man who is very sensible and practical, and he’s married to a former English major who sees symbolism everywhere. I carry feathers into the house proclaiming that they are signs from my daughter saying that she loves me. He tells me that birds molt. On New Year’s Day I found a heart shaped rock in the middle of a brick outside when I stepped out of the car after our long trip back from New York. I had asked for a sign from my daughter that she is still with me. I was so sad thinking that this year, 2015, would start without her. I believe that these gifts come from my daughter, but my husband says, Coincidence.

This spring my husband turned the grill on under a flowering dogwood tree. One petal landed in the middle of his big hand and he said it looked like a heart and he thought of Mary Rose. He said that all the dogwood petals looked like hearts this year.

I wish for each of you to find hearts and roses and feathers this Mother’s Day, because our dear children are still our children. They love us, and we are their mothers on this plane, and the Mother’s Day gifts that we receive cannot be found in a Hallmark store.

Come, Sweet Child, Sweet Mother, Aunt, Friend, Come, this Mother’s Day and show us the truth about Life.