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I meditated one night last summer unable to sleep once again, tears in my eyes, when I merged with Christ’s heart for a few moments. I have done this meditation many times since, and though it is hard for me to stay with Him and His peaceful, loving energy for very long, I return again and again to His heart. I wiggle and I squirm. Meditation is not my strongest skill, but I continue to sit and breathe. The first time I did this meditation, sitting on a purple cushion under the painting “Healing Companion,” I felt electrically connected to everyone in a web of golden Light. There was a charge in the connection. I felt total peace. I felt like I would be okay even if my baby died. My heart expanded in love and light and unity.
In the center of Christ’s heart I felt loved and whole, one small part of a bigger work of creation. I was one pregnant woman who would bury her baby, but I was loved and there was mercy being showered into every cell of my being, into the depths of my soul. Christ means “Light” and I am often stunned by the things that people say in Jesus’ name. Christ is loving, unlike some of His judgmental followers. When I hear something crazy that someone says on behalf of Jesus I sometimes have to take a breath and remember the Christ that I follow, who loves all unconditionally, no matter what, as I say to my three-year-old son. I imagine Christ appearing to the myrrhbearing women after the Resurrection. His love fills me to overflowing and through this meditation I can remind myself again and again of my place in Him, in His heart and in His creation.
Are you ready to try this?
Close your eyes and get into a comfortable seated position. Take a few cleansing breaths. Relax your body. Imagine sitting behind Christ who is also in the same seated position. Merge your heart with His heart. Enter Him through His heart. You are one with Christ. You are completely surrounded by Christ and His Light. Take deep breaths and feel this energy of deep peace. You might see certain colors or hear the refrain from a special song or hymn. Continue to take deep breaths and feel Christ’s energy. Feel your place and connection to everyone and everything in the Universe. Breathe in peace and acceptance. Christ accepts you as you are. Please accept yourself as you are. Forgive yourself as you are forgiven by God. Stay here as long as you like, allowing your heart to be showered with love and light. When you are ready open your eyes and wiggle your toes and fingers before getting up.
I will meet you at the center of my Universe with love in my heart no matter what.
It is July 2014. I am pregnant with a baby that is dying. I wait and wait. Each day and night is long and feels like a week. By the time my daughter is born in August, I will have had 21 days of contractions. Until then I sit inside most of the summer unable to be active because of pain in my hips and legs and back. I am on my computer where if I cry no one will know. A Facebook friend, who is also a midwife, posts “I hate all things post partum.” She has just given birth to a beautiful healthy son, her second living child. I feel like someone has slapped me in the face. The words sting, and they stay with me for a long time. I know that she does not hate her beautiful new son. What could I say when I knew that I would go through labor to birth a dying baby and walk those long months afterwards healing with my arms empty?
Other Facebook friends complain about their pregnancies. They are uncomfortable or the baby is big and active and kicks once again. I remember how much I wished my daughter would move and grow, how much I wanted a normal pregnancy with kicking and turning. Instead I carried a baby who barely moved and I planned her funeral while I carried her praying that I would meet her alive, even for a moment. After an ectopic pregnancy, a friend listened to her pregnant co-worker complain about the sacrifice of not drinking for nine months. Another friend who suffers from endometriosis and has not conceived a child tells me that she is tired of hearing her pregnant friends complain about the nausea and kicking. “I’m sure that pregnancy is hard,” she says, “but my friends are carrying these miracles.”
There are many women hurting while others seem to take for granted the good fortune of their healthy pregnancies and healthy children. I was childless for 15 years, and remember that constant discussion point around the question “Do you have children?” I could not understand then, and I still do not understand, why this role of motherhood is one that should define us. I was a writer, a grant writer, a teacher, a poetry therapist, but none of that came up in discussions. Mothers talk about their children often. There is no need to ask a woman if she is a mother. She will tell you about her children, even if you don’t ask.
One in four pregnancies ends in miscarriage and one in 160 births are still. A certain percentage of newborns and babies die from neonatal illnesses and SIDS, and another percentage of women are infertile. Therefore, there are many of us holding our electronic devices looking at ultrasound photos, birth announcements, and the joys and the complaints of parenthood. How do we take the posts and life trajectories of our friends and colleagues who seem to be clueless about other people’s struggles? They might not mean any harm by their posts, but somehow those words and photos hurt deep inside our broken hearts. It is almost eleven months since Mary Rose was born and pictures of newborns, especially girls, still sting just a little. I bless each baby I see, and remember my sweet Mary Rose, longing to hold her in my arms.
I didn’t know that my friend, Yana, was pregnant at Mary Rose’s funeral. She didn’t tell me for a few months and she never announced her pregnancy on Facebook. She refused to post ultrasound photos. Yana is an academic whose first two pregnancies ended prematurely. Many women work well into their forties putting family on hold until they are established in their field, and sometimes it is too late to conceive then. We discussed Facebook and she said “I won’t put this on Facebook because I don’t know who is looking and who is suffering in her own situation.” Perhaps only those of us who have been on the other side of the “normal” and exhausting joys of parenthood are aware of the pain and emptiness within a woman who wants to hold a living child in her arms.
The way that I have handled social media is to either hide or unfriend anyone who is causing me any disturbance in my inner peace. For people who have hundreds of friends and who are only acquaintances, I don’t think that they will notice when I click “unfriend.” And for those who are closer to me, who might have some interest in my own life, I click “unfollow.” I don’t want to read angry or upsetting posts. I also find myself so overwhelmed by those who post often during the day that I unfollow some dear friends just to limit my exposure and clicking. I can always check back on their wall and I know that my deep and meaningful relationships are alive in person, on the phone, and on Skype.
I know people who have deactivated their Facebook accounts, but I am grateful to my trisomy 18 community and support system that has linked me to other women going through their grieving process. It was in Facebook messages that I got to know my friend, Sindy, who painted “Healing Companion.” I became friends with a dear woman and artist from California, Lakshmi, whose son Siddha was born and died the April before my Mary Rose. I also came to know a woman, Sherri, whose last two pregnancies ended in death due to trisomy 18. Her sons are named Bryson and Ryder. I love these women, though I have never met them. Their babies are in my hearts. We have a mutual understanding in our experiences that few can understand.
One of my friends recently had a grief-related, cyber-bullying experience with one of her Facebook friends and I encouraged her to stay connected online and recognize that she has control over some of the experience by unfriending and unfollowing folks who are causing her any difficult emotions. There are many who look at the dangers of the Internet, but if we use this virtual world to support and encourage each other, then we can use it for good. Most of my support came through a screen as I did not get out much with my pregnancy to Mary Rose. I hated the phone those many long months and am only returning calls recently. I could not control my weeping and I can’t talk while I cry. The phone seemed useless to me after finding out about Mary Rose’s genetic defect. One of my dearest friends, Paige, thought I was upset with her when I didn’t return her calls last spring. I started to cry on the phone thinking that I had hurt my friend. Every word took such effort, and I did not know what would trigger my tears.
It is my hope that we can all be more sensitive to our others, our friends, relatives, bosses, sisters, acquaintances and women who are each walking and maneuvering through their own personal challenges. I don’t have too many answers, but I’m willing to walk and discuss ways that we can become more sensitive to each other’s path. I’m certain that we can make this easier together, by considering the weight of our words and actions, even our inactions. We are connected on the web and in life. Let’s connect our hearts and consider those who are suffering quietly, watching and reading our words through a screen with tears in their eyes.
For the five months of pregnancy that I knew my unborn baby would die I was unable to sleep at night. I opened a new Google page and put in the words “trisomy 18.” I tried different combinations of “infant death,” “genetic defects,” “pregnancy without a baby” and I kept coming up empty. I’m not sure what I was looking for, but perhaps I wanted a literary essay grappling with the reality of a pregnancy that would end in death. Perhaps I was looking for some discussion of shamanism or another spirituality to give me some understand of my place on the planet. I remember those first days, sitting on the warming Earth with my hands on the ground. My son was toddling around the yard and I heard the words “Not all beings live long” in my heart center. I was in shock and I was searching for some support about living in the reality of my situation.
After reading through the medical information about trisomy 18, I found some writings that were very Protestant and difficult for me. I read a book by a Christian woman who could not believe that her baby died when she had asked Jesus for a miracle. There were a few blog posts and articles that said that if you have faith in Jesus, then you demand your miracle and you fight the diagnosis. I was perplexed. I did not grow up in a Christian faith that makes demands on God, though perhaps we have all done this at some point. I understood the Orthodox Faith to be the faith of Mary, the Mother of God, who said “Be it done to me according to Thy will.” The faith of St. Seraphim of Sarov and St. Xenia, of St. Mary of Egypt, fool for Christ, St. Anthimos of Chios and St. Nectarios, the humble bishop of Aegina. Again and again our saints and teachers tell us we have to submit to the reality of our lives, to God’s will, fate or karma. Whatever language we use, we are walking the path of life and challenges appear out of nowhere. Our American culture does not offer much support for those of us going through life-threatening and grief-filled situations. I could not change Mary Rose’s “diagnosis” but I could honor her life and her death.
Several weeks after finding out about my unborn child’s condition I found the book For the Love of Angela by Nancy Mayer-Whittington. I read it at night when I could not sleep. I was so relieved to have found a book that resonated with my situation. Mayer-Whittington, who is Catholic, had a few miscarriages between her eldest daughter and her pregnancy with Angela, who died of trisomy 18 shortly after birth. The book had short chapters which were perfect for someone in my state of mind. Mayer-Whittington writes of her acceptance of her daughter’s condition, her path and grief, and her work to use her circumstances for some good. In one of the poignant moments in her book she writes about hearing a song on the radio that had been played at her wedding and embracing her pregnant body to dance with her unborn child. Meyer-Whittington knew that she would not have the chance to sway and dance with her child in her arms so she enjoyed this precious moment with Angela. I cried and finished the book quickly. Then I wrote an email to Nancy.
I read in the book that she and another woman whose baby had died, Cubby LaHood, founded a non-profit organization to support parents who choose to continue pregnancies after a fatal or life-threatening diagnosis. In my grief and shock it didn’t occur to me that I could ask for help from Isaiah’s Promise. I wrote to thank the writer for her book and to let her know how much she was comforting me. Within a few days I had an email from Cubby, who mentored me throughout the pregnancy and who remains a dear friend. Cubby asked for my address and within two days I had beautiful gifts coming to my door. Isaiah’s Promise sent presents for my unborn baby when most people would not consider such a thing. Their volunteers made beautiful blankets, including a pink and white blanket with Mary Rose’s name stitched on it, a baptismal gown and tiny booties for a premature baby, a baptismal kit, the book Letters to John Paul: A Mother Discovers God’s Love in her Suffering Child by Elena Kilner, a prayer shawl, and other thoughtful and touching gifts that surrounded our few moments with Mary Rose. Cubby, whose newborn son, Francis, died many years ago, has lived her life in service to others. I did not know that she was battling cancer as she wrote to me. She didn’t want to add any stress to our difficult pregnancies by telling us of her own struggles.
Isaiah’s Promise cites the scripture from Isaiah 49:15 “See, I will not forget you. I have carved you on the palm of my hand.” They have a beautiful documentary on their website interviewing a few of their families. They recently published an Isaiah’s Promise Tribute Book honoring a few of the babies in their 25-year history. I am so honored that Mary Rose is featured in those holy pages among so many other intercessors.
Isaiah’s Promise might be an anomaly in that most of us deny and hide from the reality of babies with genetic defects and their subsequent deaths. However, we can all become more sensitive to those with illnesses and fragilities, not just our babies who are challenged from the womb, but our elderly and our bereaved. Nancy and Cubby met decades ago and decided that together they would support others going through the challenges of similar pregnancies. Instead of hiding from the presence of other children who would no doubt remind them of their own deceased babies, they stepped forward and embraced dozens of children who were deformed, defected, and perfectly beautiful. I count Nancy and Cubby as my life teachers. I too am writing to comfort even a handful of people. Instead of putting Mary Rose behind me, as some would want me to do, I am taking her with me on my path, and I will pause along the way to offer love and comfort to the mothers of our Graces and our Ryders. There is no greater love than this… Loving our children unconditionally is easy when we have a community to uphold us in prayer, love and action.
I hang up my Skype call to my therapist and see that NPR has a story on new studies that link higher autism rates to older parents, specifically mothers over 40 and fathers over 50. They do not mention the rates for 48-year old fathers. As my son says, “I turned sad.” I promised myself a year to work through my grief before I decide yes or no to another pregnancy, and that year is coming to a close. I am almost 43 years old. My first two pregnancies were unplanned, but now I am in a different position. I imagine a healthy baby in our house so that my tender son can grow up with a living sibling. But I now know many things that I wish I could unknow. It isn’t just the three trisomies that concern me, it is many other defects and illnesses that I had never heard of before. And of course there are the usual worries such as miscarriage, SIDS and increasing rates of many chronic childhood disorders, including learning disabilities, diabetes and cancers.
Most grief books about baby death discuss a subsequent pregnancy. Some people get pregnant right away thinking that this will take away the pain of their previous pregnancy, though it does not. One baby cannot erase the pain of missing another baby who has died. Others choose never to have another pregnancy, never to take a chance on another baby having the same disorder or defects. Some parents decide to adopt, and several people have suggested that to me. Adoption takes advocacy, and I’m burnt out after taking care of my terminally ill aunt and fighting to give my daughter a quiet homebirth. At 43 my husband and I have a 95% chance of having a child without the three trisomies. I am a worrier by nature. My parents each passed on a worry gene and the outcome is one very neurotic daughter. After a pregnancy that ends in death, what comes next?
My friend Yana has a daughter who needs a liver transplant. Her daughter is two years old now and will probably have the surgery in a couple of years. Yana and her husband each carry the gene for Crigler-Najjar Syndrome. Each of their pregnancies brings a 25% chance of this disorder. They asked themselves if they could handle another child with this disease and they decided that they could. They just birthed a healthy baby girl. My friend, Terry, on the other hand gave birth to two daughters with cystic fibrosis and they both passed away. She also had a 25% chance of this disorder with each pregnancy. She does not regret her children, nor when her doctor suggested an abortion during her second pregnancy did she ever wish that she had made a different choice. Mary Rose’s trisomy 18 was a random defect. The rates go up slightly as women get older. There was about a 2% chance of having a child with trisomy 18 at 42 years old.
In my dreams my grandmother, Despinaki, speaks to me. She says “You’re not a young girl of 25. I have a baby to send you. The hour is good.” I see her with Mary Rose and they are smiling and beaming their rays of Light. In meditation I connect to the spirit of a child that I have felt around me for decades. She says, “You still haven’t learned to trust God completely.”
Sometimes I repeat Byron Katie’s words “I want whatever God wants” and mean them with all of my being. There are moments when I know that no matter what I choose or what I do I will be alright. After Mary Rose’s death I told my therapist how scared I was that my son would die too. We looked at that fear, and I realized that if that happened somehow I could survive that too. We humans are survivors. Look in the cracks of the sidewalk and see how life seeds itself and grows up toward the sun.
I am thinking of Stanley Kunitz’s poem “Touch Me” where he writes about his garden and crickets and asks
What makes the engine go?
Desire, desire, desire
The longing for the dance
stirs in the buried life.
What are my desires? Do I desire another pregnancy to heal this one? To end my childbearing years on a different note? And then I remember Jean Valentine’s poem “The River at Wolf” where she reminds me
Blessed are they who remember
that what they now have they once longed for.
What do I long for now? A healthy baby in my arms or any baby? Could I handle another Mary Rose? A child with another illness, severe or not? Would I ever regret the outcomes of another pregnancy? It is almost time to answer these questions. Fertility rates drop dramatically between 41 and 43 years old. I do not know what the next few months or years will bring, but I know that I agree with Byron Katie about something else. She says that life breathes us, that if we don’t have the answer yet then it isn’t time to make a decision. Katie says that when the decision has to be made it makes itself. So I am waiting just a little bit longer to see what that decision might be.
Krista Tippett interviewed Jean Vanier, founder of L’Arche, on her radio program On Being. I listened to the interview this week. He talks about the communities that he founded for people with disabilities and about the “equilibrium of the heart.” He finds that when you open your heart to be present to people considered ugly and broken by others you find peace. There among the dark places of our illnesses we find peace and therefore God. Vanier tells a story about St. Francis and how he hated lepers. St. Francis said “One day the Lord brought me to the lepers and when I left there was a new gentleness in my body and in my spirit. From there I really left to serve the Lord.” What is it inside of us that turns away from people with disabilities and illnesses? Even St. Francis had trouble with the lepers of his time. When my aunt was paralyzed in her hospital bed, swollen from steroids, friends and relatives said “I can’t look at her like that,” and some stopped visiting her. I looked at her and touched her. I brought my son to her as an offering and he kissed her and played on her hospital bed amidst the body that could no longer do what she wished it to do.
And my daughter, my six pound baby, who could only open one eye, whose head was too big, chin too small, feet too long, heart broken, whose muscles had no tone at all, whose limbs splayed and whose jaw drooped open, I held that child and loved her in the murky waters of her birth. I was still. I told her she could go to her heavenly place, that we would be okay. My husband, son, mother, midwives, doula and two friends were in that space of a failing newborn’s body and we were all changed. How could I not find God holding my daughter with severe retardation and defects across her whole body? How could I not find peace? For those who opened their hearts to Mary Rose, they saw a glimmer of God and holiness. For those who chose to ignore her existence, they were not open to the “equilibrium of the heart.” By closing our eyes and our hearts to the darker parts of humanity we are denying ourselves the love that fills our broken and cracked hearts. It feels like the more that we are broken and cracked the greater our capacity to be present in the moment and to love unconditionally.
My dear homeopath is nervous about pregnancies in women over 40. I don’t ask her why, but I imagine that she has formed her belief over her research studies and her private practice. The high risk OB/GYN I saw during my pregnancy with Mary Rose smiled and said “You should definitely try again. Most of my patients are infertile.” She highly doubted that another pregnancy with such complications would be our lot. My midwife, Anni, thinks getting pregnant again is a great idea, the sooner the better. She thinks that the data are distorted as fewer women give birth in their 40s and the numbers are off. Anni has also sent me some recent studies that indicate that women in their 40s have healthier outcomes because they take better care of themselves than younger mothers.
I imagine a room of 100 babies, my 100%. I walk in and look around. I want what God wants. Five of these babies have trisomies. Three of them will die as babies. The first few times I imagine this room of babies I am scared. Which are the five that I don’t want? But then my heart softens and I realize that I could love all of the babies. I don’t know if I will become pregnant again, or if I get to keep a child nor do I know which one might be birthed. But I walk forward with trust in my heart. Whatever condition a baby is in, I can love her. I won’t live by data and statistics alone. It is the heart, the heart that carries me forward, closer to my Light.
The untitled artwork pictured above is by Lori Thomas Abbott .
The night after I buried my newborn daughter, my milk came in. I had hoped that I would be spared dealing with mother’s milk. I was shocked and surprised that I was shocked, relieved that I did not have a severely ill child to take care of and that the pregnancy was over. Grief thick as molasses settled in with the aching physical soreness after labor, hormones that woke me up at night looking for the baby to feed, the longing to hold my child, the memory of holding a cooling baby in the bewilderment after labor. Hadn’t I been through enough? Why milk, when Mary Rose was not here to drink it? It felt as if God were mocking me. My midwife, Anni, said that the whole body was weeping. I cried and cried, struggling to get around since my sciatic pain was still severe, wondering if I would survive being postpartum at all.
It was Sunday night and my mother tried to bind my breasts while my husband slept and I cried from pain. The next morning the pain was excruciating. I wept and called my midwife who would come to help. My breasts looked like missiles about to launch. The pain was so intense that every movement hurt. Afterbirth pains continued. I remember sitting down a lot and weeping. After all that work, the months of pregnancy and labor, what did I have to show for my efforts?
When Anni came with essential oil of peppermint and a carrier oil, No More Milk tea and a bag from Rite Aide with advil, ice packs and bandages, I felt her love in her blue eyes and ready hands telling me that I would be okay. I was writing a dark poem, moping in bed, frustrated that my back pain hadn’t gone away immediately. She showed me how to massage the essential oil of peppermint in a carrier oil onto my breasts. I started to also massage out some of the milk for some relief. She often talked about the gift “these babies” are to those who encounter them unafraid, but I just wanted my milk to go away.
It took a few weeks for my milk to dry up completely. It took some time to piece together a “how to” list to stop the milk. This is what worked for me:
1. Sudafed has been shown to dry up milk. I took a lot of Sudafed for about a week and then started taking less for a second week.
2. Sage tea and No More Milk tea, both found in a health store or online at vitacost.com or luckyvitamins.com. I alternated the teas and drank them all day. I think that the sage tea worked better, but they both helped.
3. Cabbage leaves cold from the refrigerator did not seem to work. I read one study that said cabbage leaves had not been shown to decrease milk supply but acted as an ice pack and relieved some pain and pressure. I continued to look online until I found another source that said that to activate the enzymes in the cabbage leaves you had to crush the veins by going over each leaf with a rolling pin. I covered my breasts in crushed cabbage leaves and then placed ice packs on them. When the leaves wilted I did it again.
4. Essential oil of peppermint diluted in a carrier oil applied directly to breasts has been shown to slow milk supply. I did this two to three times a day.
5. Hot baths to let the milk drip out. I sat in a bath and let my milk drip into the tub each night, sometimes massaging some milk out. It offered some relief.
I started doing all of the things above, including using ice packs on my breasts, for at least two weeks and then started taking steps out. I stopped the Sudafed first, then the cabbage leaves, then the essential peppermint oil. I stuck with the teas for several weeks until my breasts no longer filled up with milk. I know that binding breasts has worked for women for centuries, but it was too painful and I decided to skip that suggestion.
After my first pregnancy I pumped milk for ten months for my son until I became so ill that I had an autoimmune disorder. I did not get sick from pumping. It was a combination of not sleeping with a baby waking up every three or four hours, coxsackie virus, and the exhaustion of pumping day and night while taking care of a baby and a terminally ill aunt that put me over the edge.
Many mothers who carry children with fatal illnesses to term pump and donate their milk to a breast milk bank helping others who have too little milk or no milk at all. After my experience with my son, I could not get back on the pump unless I had a child able to drink my milk. I felt selfish, but I did not want another baby getting Mary Rose’s milk. Perhaps this path of stopping my milk would have been easier if I had pumped and slowly weaned myself from pumping until the milk lessened, but I couldn’t do it.
In speaking to my bereavement doula, Leslie, she said that in her experience mothers who are in shock and don’t expect their babies to die often pump as a part of their process to work through their shock. She thought that I had been mourning Mary Rose during those five long months after her “diagnosis” and I didn’t need to pump.
One week after my daughter’s funeral I went to a pow wow with my doula, Leslie, and artist friend, Sindy. We sat on the grass under a tree listening to drumming, feeling that ever constant heartbeat of the Earth moving forward, even when we want life to stop. The dancers came out in their colorful native clothes, moving and singing, celebrating their culture and way of life. A woman carrying a tiny newborn walked in front of us and sat down right in front of me. It was a big park. Really? I thought. My breasts ached, my body bled and I sat there trying not to cry, held up by the sisterhood of my sweet companions. I didn’t stay long because I was exhausted, but I walked around limping and bought a wooden frog for my son knowing that the choice I would make was to continue on my path for as long as God kept me here.
It is my hope that each woman faced with milk after a miscarriage or infant death does what feels best. That first intuitive feeling in the heart center is right. Pump if that feels right and bless others with your mother’s milk. And if, like me, you just can’t do it, you just can’t attach your breasts to a machine and package up your child’s precious nourishment, don’t. Either way, you will survive this time that feels endless and maddening. Those post-partum months were worse than I expected, especially because I couldn’t sleep through the night. I would wake up after a couple of hours of sleep and toss and turn for hours. Where is my baby? I kept thinking. My eyes would dart around looking for the girl I wanted to hold and nourish.
Where is my baby? I like to think that she is right next me, cheering me on. You can do it, she says to me. And so can you.
I hope that you are accompanied by a few holy sisters who surround you and hold you in your tears as the Earth beats on.
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.
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.
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