Mother’s Day

Thank you to each one who mothers children, parents, nieces, nephews, friends, animals and plants. I hope that on this day, which is painful for so many, we can unite in love for one other. Nancy, a dear woman who adopted me as her goddaughter years ago, wants me to tell people not to lose hope. She says light always overcomes the darkness. Her work as a shaman and healer centers on this truth. We live in hard days, but keep hope alive, Nancy says. When I call her she tells me, Sweetie, it’s going to be okay. Words all our souls long to hear…

How are you? I think about people maneuvering through the pandemic to what we want to be the other side. Yet, there is no green light telling us to go quite yet. I am pausing today to remind myself that I am doing the best I can, and it is enough.

Katherine May’s book Wintering is in my hands. Her podcast interviewing people who have “wintered,” or gone through hard moments, is comforting this year. May says “winter is not the death of the life cycle, but its crucible” (14). A crucible, a container, an earthen pot that collects metal… Even in spring, the winter of isolation and pandemic still feels close.

No one knows what the effects of isolation will be for any of us, especially our children. We wait and breathe into each moment. Tulips are opening as we await snow showers this week in Colorado. I think of you often, Reader. We are in this time together, and I wish you quiet moments this Mother’s Day whether all your people are alive and with you, or you have lost a child or a mother and your heart aches. Please keep in touch here or on Instagram. I am @labyrinthofmyheart.

Updated classes are online with my class for providers and others on bereavement work in pregnancy and after birth is set for September. I have designed other classes too on gardening and mothering. You can look at my classes here:

A few publications have come out, and the one that excites me most is a poem called “Map” from my novel manuscript that came out in HerWords. Links follow to K’in Literary Journal and For Women Who Roar, both with two poems.

This Winter Night

         I have been intending to write for some months, but they slipped by along with plans for this year. In these last hours of 2020, I am reaching out to check on you. How are you, Dear Reader? Are you alright? For the many losses of the year, I am sorry. For the moments we missed with each other face-to-face, I am sorry. For the pandemic, the economic devastation to sectors of our economy, for our children’s losses of routine and friends, I am sorry.

         The road curves before us. What lies ahead, I do not know, but I will walk with intention, and prayer and keep you with me. Please know that I send love and boundless intentions for healing and hope this winter night.

         I read two beautiful books that I wanted to write about in separate posts. Instead I mention them here. A Country Between: Making a Home Where Both Sides of Jerusalem Collide by Stephanie Saldana written as a letter to her son addressing the many injustices of this planet is profound and beautiful. It is a book of beauty and community and conflict. The second book is Perfectly Human: Nine Months with Cerian by Sarah C. Williams. Her pregnancy with a child with a life-limiting diagnosis addresses the ethics of being pro-choice and the assumptions of this political position. The book is intelligent and allows us to look at the choice of carrying to term with its complexities. This is not an either/or discussion, but an and/and for us to ponder.

         Two of my poems were published in November. “Blue Jay” is in Into the Void and “Artemis Bruises My Belly with her Acupuncture Needle” in Rogue Agent. Three poems and one work of creative nonfiction are forthcoming in 2021.

         All of my classes have been pushed out to 2021.

         I did not finish my novel this year, though I really tried. Thanks to the kindness of my friend Shereen, two days at her cabin in Nebraska were enough to finalize a poetry manuscript on my first marriage. It is under consideration in a few contests. I want to start a new book about my late aunt and her illness. Soon… My boy has been in school remotely since March, and he is more important than the deadlines I set for myself. 

         The poet Jean Valentine passed away this week. I leave you with her words, and wishes for a light-filled 2021.

            The River at Wolf

Coming east we left the animals
pelican beaver osprey muskrat and snake
their hair and skin and feathers
their eyes in the dark: red and green.
Your finger drawing my mouth.

Blessed are they who remember
that what they now have they once longed for.

A day a year ago last summer
God filled me with himself, like gold, inside,
deeper inside than marrow.

This close to God this close to you:
walking into the river at Wolf with
the animals. The snake’s
green skin, lit from inside. Our second life.

Jean Valentine

Solstice Blessings

Solstice to solstice, it is summer now. 2020 brought many changes including remote school for my boy. Isolation. My first Easter alone with no family. Completing my novel about my Greek ancestors at strange hours. No therapy waiting rooms or church or family suppers or summer camp. And so, I do what I know. I expand my garden in joy and grief. I put my hands in clay soil. I dig and wrestle. I compost and plant.

Forgive me for my absence these months. Everyone I know was in survival mode, navigating a new daily life. How are you, Reader? How are you finding some joy in the midst of many losses and sorrows? Our world has turned more upside down, and yet…

Here in the heat of the high desert in Littleton, Colorado, tomatoes are blooming. Peaches made it through the last frost and roses are opening pink, opening purple, opening white. My hands are cracked and dry from hours in the soil. My creative self is sneaking moments to write at night, plotting and planning a trajectory for novel and poetry manuscript. If you are looking for me, I am in my garden hoping.

I respect each of you, my blog subscribers, so I am offering something new. If you would like to join a subscription that will include information on classes (I’m so excited about new classes) and writings and more, please subscribe here For a limited time, subscribers will receive a bonus video of me reading the first chapter of my novel. This is the way that my blog subscribers will only be notified of new blog posts.

All of my Pregnancy and Infant Loss classes are on zoom for the foreseeable future, and there are four options on my website.

If you are a lover of birds and family stories, I recommend Margaret Renkl’s Late Migrations: A Natural History of Love and Loss. Renkle writes “But the shadow side of love is always loss, and grief is only love’s own twin” (7). Let’s love hard, Dear Ones. We have work to do to get through these coming months whole, in unity. We can love each other hard enough to serve each other hope and help. I am here for you.

The Christ Heart Meditation

jesus pantrocrator imageI 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.

Social Media and Grief

facebooksquareIt 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.

Isaiah’s Promise

BabyinhandsFor 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.

Another Child?


IMG_0632I 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 .

Stop This Milk Please!


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 or 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.

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.