The Baby who Became a Seal

creature-robbe-seal-sea-pets-north-swim-water_121-72528

I stand in the gift shop at the Virginia Aquarium in February, almost halfway through my second pregnancy looking for a small stuffed animal to set up an altar for my unborn child. I am scheduled for my first ultrasound the following week. I hold a blue dolphin and all of a sudden I remember my first midwife, Vicki, and her nephew.

Over two years before I interviewed Vicki in December. My son was due in February. I had decided to move to New York toward the end of my pregnancy and needed to figure out his birth. I asked Vicki if any of her babies had ever died.  Yes, she said, One baby. He was my nephew. She told me that before he was born she had a dream that her nephew looked like a seal swimming in deep, dark waters. She told me that Ian, her nephew’s older brother, asked his father What if the baby isn’t a baby? What if the baby is a seal? When the baby had low heart tones towards the end of the pregnancy his mother, Karen, went to the hospital to deliver and soon after labor, without any knowledge of his condition, he died as she held him.

I bought that small dolphin and put it by my bed. A few days later I found out that my baby had several anomalies and might have trisomy 18 or 13. The best scenario is that this baby has Down Syndrome and a heart defect the doctor said. When I trained recently to become a Peer Minister for Isaiah’s Promise, the trainer from Be Not Afraid said Our parents pray for Down Syndrome. Those babies live. Those babies are miracles when you have a fatal “diagnosis.” I didn’t pray for that particular trisomy because somehow I knew that the sadness I had felt, the sadness that I thought was exhaustion might have been some intuitive knowing. My baby would be severely retarded. My baby would have no muscle tone. My baby would die.

I texted Vicki to tell her about my ultrasound results and she told me then that her nephew, John Gilbert, died of trisomy 18. I imagine the baby swimming in deep water, his body lithe and dark, flexible to be who he was. A sweet boy. Someone’s son. A Light.

When pediatric hospice tried to sabotage my homebirth, Vicki offered her home to me to birth Mary Rose peacefully. She had a friend in hospice and had already made contact with her. I felt so loved, surrounded by Grace here in my house with Vicki’s support reaching from New Jersey to Virginia. I recently had tea with Vicki and she told me more about John Gilbert’s birth. After John died his mother decided to pump and donate her son’s milk to other infants. His mother pumped for six weeks and during that time, Vicki got calls from all over the tri-state area from mothers who needed breast milk for their infants. John’s mother pumped gallons of milk and Vicki drove that milk to the Bronx, Westchester, Rockland County, around New Jersey. His milk fed five babies in that time. Vicki says John Gilbert continues to bless families by putting babies in need and their mothers with extra milk years later.

In Patricia Harman’s novel The Midwife of Hope River, Mrs. Potts, an older midwife is talking to the narrator, a younger midwife, about her son.

“Is he grown?”

“No, he died. Died at birth…”

“That’s what makes you a good midwife,” the old lady says. “You know the value of life, and you know loss. My father used to say the two are one, like the bramble and the rose. Life and death…the bramble and the rose” (200).

John Gilbert and Mary Rose are integral parts of our lives. Vicki and I choose to hold the space for the living and the dead who live on and bless us still. When Vicki and John’s parents looked into his dark eyes, they saw the depths between the worlds. As Vicki continues to receive babies she remembers her nephew and somehow understands the connection between the ancestors and ourselves a little more than those who have not witnessed the deaths of young ones whom we expected to live. Once we experience an infant death we do not take new life for granted anymore.

John Gilbert is an excellent midwife’s assistant. He is there with Vicki, especially in those dark hours of the night that remind us of the ocean’s mysteries when women labor as they wait for the light of the sun and the warmth of their newborns’ bodies in their arms.

To the Mother in the Red Shirt at Music Class

musicroom_tcm4-119705When my son walked over to you, staring at your beautiful baby boy, you asked him What do you want? My three-year-old boy did not take the triangle that you offered him. What is it that you want? you asked again reaching for a tambourine as he stared at you and your son processing how your baby moves and his sister did not.

The first time that my son saw a newborn after his sister, Mary Rose, died of trisomy 18 an hour after birth, he was startled when the baby girl moved her hands. Later in the car he said to me Our Mary Rose didn’t move.

Why do some babies go to heaven? he asks. Why do some babies live? God, the Gardener, plants the soul in the best garden for her soul I tell him. Mary Rose is doing her work in heaven. We are here doing our work on earth. I want to go to heaven, he says again. I want to be with my sister, Mary Rose.

Mother in Music Class, I’m sorry that my son made you feel uncomfortable. He is a little boy who knows unbearable loss and yet he bears it. Your son was moving and crawling and thriving. He doesn’t know much about the babies who live yet.

Blessed Nativity, Thank You & One Request

IMG_1897As we come upon the Nativity of Christ I am thinking about the excitement when a baby is coming. What is it about a new soul entering our broken world that brings tears to our eyes? This holiday season there is much to be grateful for and much to ponder. I was recently listening to Krista Tippett’s unedited interview with John O’Donohue and he told her that it’s not the soul that is in the body, but the body that is in the soul. This has stayed with me as I remember my daughter, Mary Rose. Her soul was certainly bigger than her tiny body.

As we prepare ourselves in the way that humans in the West prepare for Christmas there is much doing. Christmas cards and cookies. Shopping and pageants. We Westerners have created a maddening spinning wheel called the holiday season just when our bodies want to slow down and understand the deep energy of winter. Yet in the midst of all of this I have found many quiet moments of deep breaths and tears, liturgical hymns and more tears. This second Christmas without my daughter I still weep remembering what could have been, what was and what is.

My family is coming as they came in the summer of 2014 to meet my daughter, only she waited weeks and they went back to their homes and their jobs, except for her granny who held her and saw. My family is coming again and this year we await the Christ child, the holy child whose Mother is mother to us all. I have cleaned a chandelier and vacuumed my car. I baked cookies and finally ordered Christmas cards. Once again a child is coming and people gather to worship the birth in churches and temples, around the tree, around the table.

It has been nine months since I launched this blog and birthed this book for Mary Rose and for mothers with fatal or difficult “diagnoses.” I want to pause at this moment to thank you, Dear Readers, for making this blog so successful. With no advertising we have had thousands of views and every day a steady stream of visitors are reading these words that struggle to make sense of what cannot make sense. Thank you for trusting me to do this work, for inviting Mary Rose into your hearts and homes. Thank you for your time, for your kind comments and messages, for your stories about your own loved ones in spirit. I have been thinking hard on the names of your babies and I want to honor them and you.

If you would like your baby’s name who has had a fatal/difficult diagnosis or who was born still or was miscarried in my book that is coming out this spring, please comment below with your child’s name. You can also send me a private message on Facebook or Twitter. The links are on this page. Please do so by January 11th.  I am hoping to arrange the names at the end of the book as a tribute. I have started a list. Ryder Chance, Bryson James, Grace Miriam, Siddha, David Isaac, John Gilbert, Zinnia Wild Grace…

You are in my heart as we continue to walk our path.  Today on the Solstice we pause, and then walk toward the Light. We have much work to do and we are blessed that we have each other to rebuild our communities, to hold each other’s hands and to breathe together the love that abounds all around us, from this earth and from the heavenly realms.

Many blessings to you as you breathe through the intensity of these days. We are one.  With all our children and loved ones who have moved into the heavenly realms, we are still One.

Thanksgiving, Gratitude, Grief & a Book Review

free-clipart-thanksgiving-jixEMo9iEIn Sunday’s New York Times, Arthur C. Brooks’ op-ed “Choose to be Grateful. It Will Make You Happier” cites research about gratitude and “greater life satisfaction.”  Gratitude stimulates the brain. He writes “Choosing to focus on good things makes you feel better than focusing on bad things.” This is something that most Americans agree with, but where do grieving mothers fit in? Is remembering our children who are no longer here a sign of ingratitude? Last night I read Angela Miller’s post “Grateful and Grieving” from her blog A Bed for My Heart. She eloquently discusses her grief and how grieving is not a sign that we are not grateful.  Miller writes “It’s not one or the other. Yes I’m still grieving because I love and miss my son with every molecule in my body, but that doesn’t mean I’m not also deeply thankful for my blessings.”

Recently my mother went to a family gathering and an aunt asked her “Is Dianna still sad?” The answer is yes. Dianna is still sad. Others offer my mother advice for me. “It is time for Dianna to find closure.” “She needs to move on.” “She has a son.” One woman told me that I have to look at what I do have, not at what I don’t have. I have a living son and a daughter on the other side of the veils.

Two years ago I was newly pregnant at Thanksgiving feeling first-trimester sick. I was not thinking too much about the abstraction of who my baby would be. But I did think This is my second pregnancy. I’m done child-bearing after this. I imagined that I would birth a healthy child. I imagined that all would be fine. Now two years later that assumption no longer exists. This year I prepare for the Thanksgiving holiday with a gluten-free America’s Test Kitchen pie crust recipe, and my heart still hurts.

Brooks’ op-ed made me smile because I am so grateful for so many things like this cold New York evening and red leaves almost gone from their tree. I am grateful for my family and for my friends. I am grateful for my readers and this blog and the publisher who is waiting for my completed manuscript. I am grateful for Mary Rose, but can I also be grateful for trisomy 18? Can I be grateful that she had the life that she was given by God to fulfill her mission in this life and the next? Her 42 weeks inside me, and one hour outside.

I was recently asked “How old would she have been?” at my MOPS meeting. My eyes opened wide because I stopped my brain from thinking those thoughts. I do not let myself think about how many months Mary Rose would be or what she would have been doing. In August my husband said “She would have been walking.” And I turned to him and replied “But she would not have been walking.”  I cannot separate my daughter’s body from trisomy 18. But I quickly did some math in my head that Wednesday morning and answered with tear-filled eyes, “She would have been 15 months old.” My friend Terry came for a visit on her daughter’s birthday last week. We spoke about grief and life and anxiety and post-traumatic stress disorder and our children. “Heather would have been 46 today” she said. Angela Miller writes about the empty chair “where my seven year old should be sitting…” And here we are living in this world of juxtapositions and paradoxes. Of reality and imagination. Of our children, who are still our children even though they are now ageless.

In Elizabeth McCracken’s memoir An Exact Replica of a Figment of My Imagination, she writes about her first son who was born still at 41 and a half weeks. Her pregnancy was a happy time.  There were no complications until he died in utero. McCracken stays on the practical, tangible side of her grief. She does not believe in God, which does not bother me per se, but when she speaks of her dead son, it is difficult for me to process death without the spiritual dimensions.  However, this book is valuable as an academic’s journey through grief. The writing is good and it is not a sad book. McCracken is honest and talks about her travels, her pregnancy and her expectations for her son. Some of her insights are so true and important, though I cannot relate to her decision not to take a photo of her son, or not to have her husband present at the delivery, or how instead of giving the boy one of the names that they picked out and were considering, they put Pudding on the death certificate, which was his nickname through the pregnancy. I chose a different path, but there is value to McCracken’s book even if she walked her child’s death differently. In truth we each walk this path the best way that we know in the moments of our grief.

In discussing her grief and other people’s sympathy, McCracken writes that “grief lasts longer than sympathy, which is one of the tragedies of the grieving” (80). Is that what this is? I think. The world moves so quickly around me and people want me to stop talking about my daughter who died even though she is still my daughter while I listen to them speak of their many living children. What negates my own daughter’s existence? And yes, my heart is still tender and raw and I do seek comfort. I want to make sense out of this trauma and grief and I cannot do it alone. McCracken speaks about the social aspect of the grieving parent after mentioning her pregnancy or her stillborn son to others. She writes “People changed the subject. They smiled uncomfortably…They didn’t mention it. They did not say, I am so sorry or How are you?” She goes on to discuss how surprised she was when people didn’t mention her son or pregnancy (92).  When I saw my uncle for the first time in over a year he did not mention my pregnancy or my daughter. Chit chat. Small talk. When someone asks how many children I have, I always mention Mary Rose. The person then looks at me in horror. A dead child! How could I speak it?

Later on McCracken beautiful and honestly writes

I’ve done it myself, when meeting the grief-struck…To mention it by name is to conjure it up, not the grief but the experience itself: The mother’s suicide, the brother’s overdose, the multiple miscarriages. The sadder the news, the less likely people are to mention it. The moment I lost my innocence about such things, I saw how careless I’d been myself.

I don’t even know what I would have wanted someone to say. Not: It will be better. Not: You don’t think you’ll live through this, but you will. Maybe: Tomorrow you will spontaneously combust. Tomorrow, finally your misery will turn to wax and heat and you will burn and melt till nothing is left in your chair but a greasy, childless smudge. That might have comforted me (94).

I was speaking to my friend Jenn about this very thing this summer. She says she doesn’t want to bring up the dead baby at work because she does not want to upset the mother. But the mother is never going to forget the baby. We remember our children living and dead, and for Jenn to tell her co-worker that she is thinking of her child is to acknowledge the child’s existence which is all we want.  We don’t get the milestones, the parties, the graduations, the holidays, so can our world give us that one acknowledgement of the existence of our children? This Thanksgiving, can we open our hearts to be grateful for the living and the dead? Can we make space around our tables for the memories of our children and other loved ones who have passed away? We remember the grandparents and parents and aunts, but when it comes to the children we do not want to speak their names. As McCracken says “The dead don’t need anything. The rest of us could use some company” (138).

There is one more thing that McCracken says that strikes a chord with me this holiday season. She speaks of her pregnancy to her second son, Gus, and says “there was nothing in my life that was not bittersweet. Every piece of hope was tinged with sadness; every moment of relief was lit on the edges with worry…. Of course [Gus] does not erase his older brother’s death” (183). So when we gather this holiday season, please don’t chastise a grieving mother or father or sibling for not “getting over it.” Please don’t insist that living children should fill the empty space of where the other child used to be. Let’s offer a smile and some kind words instead. There is no getting over the death of a child. Or anyone else for that matter. As Lucie Brock-Broido writes in her poem “Pyrrhic Victory,” “Some grief is larger than my body is.” Certainly this grief is larger than a month or a year, even when we are so grateful for so much.

Halloween

Halloween_symbols_like_the_jack-o'-lanternIt is the second Halloween without my baby girl. I have been thinking all day about my Facebook feed with pictures of adorable children in their Halloween costumes.  I love these pictures.  I enjoy seeing my friends’ children, my niece and nephew and cousins.  But today I did not post a picture of my son in his Martin Kratt bat creature power suit.  He gives me his three-year-old stink face smile as he sits on an excavator at Touch-A-Trucks in his costume and I snap another photo.  He holds my hand as we walk and trick-or-treat for the first time this evening.  We ring four doorbells and he is in awe of the bowls full of candy.  I did not post a photo of my son today because I’ve been thinking about the mothers who have had miscarriages and stillborn babies and babies who died after birth. I am thinking of my friends struggling with infertility and I’m thinking of the ones who are not here.  My Facebook page is blank today because I am holding the space for the ones we love who aren’t here.

“Halloween isn’t even a holiday,” my husband says to me when I tell him what is on my mind. But Halloween is a part of our American culture.  Tonight my pumpkins are in memory of the babies who are not here.  I know that they are very close to us.  In our hearts.  On our minds.  May our world remember us too:  the mothers and fathers and siblings who remember our own on the other side of the veils, even as the children around us squeal and laugh and shout “Trick or Treat!”

As night settles in around us my son holds my hand and the jack-o-lantern’s glow reminds me of my daughter, my love, my Light.

The Holy Homeopath

file_ignatia-amaraI find myself surrounded by amazing women healers and they hold me up against the frailties of this world. When I was pregnant with Mary Rose, my daughter who died an hour after birth, my tribe included the incredible therapist, doulas, midwives, massage therapist and homeopath. Yes, I use homeopathic remedies even though some believe homeopathy to be a placebo, a nothing, a sham. I see homeopathy as holy healing and I call Aniela, my dear classical homeopath, the Holy Homeopath. The spiritual are one with the physical in this treatment and she sees me for who I am: a broken seeker who walks her path one step at a time, one breath, then another.

I’m not sure why homeopathy is a topic of controversy, but I recognize when people roll their eyes at me when I mention how much homeopathic remedies have helped me. They work for millions of people in India, the Royal Family of England, and people all over Europe and the United States. In Copeland’s Cure, writer Natalie Robins, offers documented research on how homeopathy was once taught at most medical schools in the United States until the American Medical Association (AMA) went to war and successfully took homeopaths out of their association. Why? Money. Homeopathic remedies are cheap and they work. Therefore, patients require fewer allopathic medicines. Where it was once considered unethical to advertise for any pharmaceutical, now the pharmaceutical industry is a powerful force in American healthcare. To understand the extent that homeopathy was used by medical doctors in the 1800s and early 1900s, according to Robins, “More than 1,900 homeopathic doctors were commissioned in the army and navy during the [first world] war” (143).

I started homeopathic treatment in my late 20s. I have a primary care doctor and go when I need to, but I usually start with natural remedies as they are easier on the body and have fewer side effects. With my pregnancy with Mary Rose, she was “diagnosed” by high-risk OB/GYNs and I continued to work through the medical system seeing a neonatologist, infant cardiologist and other doctors. Under Aniela’s care I could tell you the remedies that heal burns, fevers, poison ivy and an autoimmune disorder, but I want to talk about grief. There were at least two times during my pregnancy with Mary Rose, when I cried until my body convulsed for so long that I thought I would never stop. The first time that this happened I texted Aniela. I can’t stop crying, I wrote. Ignacia, was her reply. And within minutes my crying slowed and I was able to make dinner for my son. Even though my daughter had a fatal “diagnosis” I ate well, took vitamins and supplements and refused to take any medicine, even for excruciating nine-day headaches. I love both of my children equally and boundlessly and did not want to treat my daughter with less respect and concern, even though she was expected to die. Under the care of my homeopath, I used ignatia from the shock of the “diagnosis” to the end of the pregnancy and the intense grieving period that followed Mary Rose’s birth and death.

There is a heaviness in my heart center, I typed a few weeks later, I can’t bear the heaviness of this grief. Aniela replied, Take two doses of ignatia in one hour. The ignatia sometimes held for five weeks or a couple of months, but once I uncontrollably cried or couldn’t bear the heaviness of trisomy 18 and my grief, I would take a dose and feel lighter. Aniela gets me. She answers my emails and texts at strange hours. She generously and graciously offers homeopathic advice when other homeopaths would charge fees for every correspondence. I met Aniela through an occupational therapist who is of the Baha’i Faith. “She is the best,” Leigh said, “go see her.” And for once someone used that phrase correctly. I drove to New York City with my fussy baby alone to meet this woman, who is also of the Baha’i Faith. She has been treating us both ever since.

On August 8th, Aniela left me a voice mail message after I texted her that Mary Rose was born and died. “We’re all praying for you. We love you. We love you. We love you and we’re praying for you and dear Mary Rose.” She rocked me in her lull of we-love-yous. A few days later there was a package with a Baha’i prayer that is framed and hanging next to a picture of Mary Rose in my dining room.

The Great Being saith:
The Tongue of Wisdom proclaimeth:
He that hath Me not is bereft of all things.
Turn ye away from all that is on earth and seek none else but Me.
I am the Sun of Wisdom and the Ocean of Knowledge.
I cheer the faint and revive the dead.
I am the guiding Light that illumineth the way.
I am the royal Falcon on the arm of the Almighty.
I unfold the drooping wings of every broken bird and start it on its flight.

Tablets of Baha’u’llah

I received it on Saturday, a week after Mary Rose’s funeral, when I got home from a pow wow I attended with Sindy and Leslie. I had just seen a falcon at one of the booths.

I think of homeopathy as prayer, a subtle energy of God, present in His/Her creations (because God is bigger than either genders), lifting us gently out of imbalance and restoring our life force and energy. It is a long journey, and though we are moving on from ignatia to balance me from my difficult pregnancy, I will always be grateful for the remedy, so subtle it could make a weeping mother wipe away her tears and reach for a knife to cut tomatoes for her son’s dinner.

I call Aniela holy. To be holy is to be fully human and to embrace life which also includes death. It is to breathe in communion with every other sentient being and an inner knowing that we are connected in many ways. Only by walking in unity with each other and our Creator and our Earth can we build the communities that will embrace and support life in all its forms, with healthy DNA or trisomies, with love, always with love.

Trisomy 18: The Range of Possibilities

sunset_birds_clouds_213977          for Nora, who gives us hope.

One of the difficult things about trisomy 18 is the range of possibilities. How can a mother prepare for her baby’s birth when it might be born still or live for a few months? How do you prepare for the labor? Is it time to get a nursery ready? How do you nest? I struggled a lot with this range during the pregnancy and when my daughter, Mary Rose, died an hour after birth, I felt unprepared. That was it? Where were our tender, special moments? How could it be over so quickly after so much anticipation and such a long pregnancy? I know that I am one of the lucky ones. Though my daughter was barely breathing I looked into her eyes and saw that they were blue.

When I wrote grants for a living I depended on data to help me build my case for my projects. I am no stranger to research and data and I know what to do with the numbers when I get them. However, the numbers for trisomy 18 baffled me. The doctors give you a brochure that lists a number of defects that would frighten any pregnant women. The brochure says 92-95% of babies born with trisomy 18 die before their first birthday. The medical establishment says that trisomy 18 is incompatible with life. I wanted to know about that 5-8% who live.

Trisomy 18 is an illness with multiple defects. The child’s brain is severely disabled. In the pictures that I have seen the infant opens one eye, the jaw is slack, the fingers are in a different position, the chin is shorter, the feet are longer, the head is bigger, the ears are deformed. I read all of these defects and worried that my child would be so deformed that I would have a negative reaction to her. I wondered how I would handle my daughter’s illness if she lived. How would I manage my family’s needs when I live far from my extended family? What would the impact be on my young son? I mentioned my fear to the genetic counselor toward the end of my pregnancy and told her that I was concerned that Mary Rose would live and suffer. I mentioned mosaicism and she blurted out: “Your baby has the full-trisomy 18.” I had agonized for months over this, but was never given this information that was apparent from the genetic testing.

I looked and looked for stories, for answers. Who lived? Why? I found a blog about a boy on life support who was three. I found a few other cases of children who were alive and young. Except for very rare exceptions these kids were on life support and had undergone multiple surgeries and hospitalizations to deal with their defects such as heart and other organ defects. They breathed through a trach and were fed through machines. A couple of the children had mosaic trisomy which means that the programming of all the cells are not carrying the trisomy 18 gene. Children with the mosaic illness function at a higher level and often can breathe on their own and even eat.

According to my online searches most of the 5-8% of babies with trisomy 18 who live appear to be on life support. I read about these children in newspaper articles and on blogs. The data seem skewed. For parents who choose not to be on life support, what are the numbers? For parents who choose life support, what are the numbers? I asked doctors what would happen after my daughter’s birth and was told repeatedly “We don’t know. We have to wait and see how strong she is when she is born.” However, in the publication Care of the Infant and Child with Trisomy 18 or Trisomy 13: A care book for families, I read that “5-8% of these infants live past their first birthday without extraordinary measures. And, once a child’s age is greater than a year there is a 60% chance to live beyond age 5 years.” It is estimated that there are 200 people in the United States alive and older than one years old with trisomy 18.

It is important to note here the big controversy surrounding the term “incompatible with life.” People are trying to get this term removed from the description of trisomy 18. I know that very few of these children live, and that they need doctors who will treat them (often doctors don’t want to treat babies with trisomy 18 or 13), but most of these babies do not have the programming in their bodies to thrive. In addition to the defects and disabilities, the children have incredibly weak muscle tone. This is why Mary Rose’s jaw was slack, why her limbs were splayed in all directions when I held her in my arms. This is the reason that most of these babies cannot eat or eat enough. Their sucking motion is too weak if they can suck at all. As a mother of a daughter with trisomy 18 who died, the illness seems incompatible with life, and even though some live, most of these babies die. This is not to say that babies who live don’t deserve to be treated by doctors in the most ethical way. I spoke to a neonatal cardiologist to see about heart surgery for Mary Rose and he did not recommend surgery. He said that if she could live long-term after the surgery, he would be willing to do it, but the heart he said, is only one defect of many. He also informed us that most of the babies who undergo heart surgery in Mary Rose’s condition never come off the trach. Was he being unethical? This is a man of faith who spoke honestly. We never got to the point where surgery was an option but my husband and I decided that we probably would not opt for surgery. We didn’t want to cause any suffering for our unborn daughter.

This week I was very touched by the comments and emails and replies I got to my chapter “Homebirth and the Fatal ‘Diagnosis’” that I posted on my blog last week. One woman reached out to me to tell me of her homebirth in 2000. Her daughter, Nora, was born at home with full trisomy 18 and this is rare. I made the assumption that Nora was gone like all the other babies I know with this illness. Nora’s mother shared her story with me. Her daughter lives at 15 without life support. I found some photos of her family on Facebook. Nora looks like an angel. Her eyes exude the deepest peace. I am so blessed to know her, to add her story to this work. Nora’s story is rare. So how do we prepare for the different outcomes?

A baby was born this week at under four pounds with trisomy 18 and she lives. The baby, Grace Miriam, had three diagnoses and lived for six weeks. Mary Rose slipped away peacefully after birth. Others are born still. How are we to know what will happen? When dealing with trisomy 18, as with all other things in life we can only stay in the moment and breathe. As we all know, some moments change our lives forever. The accident, the diagnosis, the illness comes one moment and nothing is the same. This happens when we give birth. It happens when we hear news we don’t want to know on an ultrasound. And it happens with trisomy 18. But our lives also change suddenly when we meet someone who lights up our soul, are offered a new job, hold a positive pregnancy test in our hand, and sometimes even when we witness a sunset dotted with birds migrating south for the winter. I am open to this continuously changing Universe and I lift up my heart and pray one more time that whatever comes today is for the highest good of all.

The Memory Box

IMG_0200[2]“Make a pretty box,” Cubby writes in her e-mail, “or buy one. Put Mary Rose’s things in there to remember her.” It is August 2014. I am in a fog but I stop at the store, Tuesday Morning. They have different boxes with prints but nothing seems quite right to hold Mary Rose’s few belongings. There is a large box with roses but it also looks like a travel case to Paris. Where did my daughter get to go?

A few months later I find a wooden box at Michaels as well as stickers welcoming a baby girl. I pause at the stickers. My baby is dead, I don’t get stickers and a double stroller but then I remember how much we wanted her and welcomed her, waited for her and longed for her. I buy the stickers with the box, as well as some decorative flowers and butterflies.

IMG_0798[1]The stack of sympathy cards is daunting. I had been thinking of making a collage, but had been hesitating. The pile continues to bring up emotions. It is both a reminder that some people cared enough to pause and reach out to us, while others had not acknowledged my daughter’s life and death at all. The beautiful cards were from people holding me up in their net of love when I could not find my footing. They were important so I spread them out, save a few and cut out images from the rest to decorate the box.

IMG_0190[1]I paint the box white and begin to glue images of flowers and butterflies and sweet phrases. These include reassurance, everlasting love, I will never be the same. I cut Mary Rose’s name out of two cards that Ann and Julie sent me. I use a glue gun and burn my fingers through the fabric of some flowers. I work into the early morning hours wanting to finish this and take Mary Rose’s few possessions out from the drawer I had prepared in my dresser while I was still pregnant. I had clutched each item weeping during my nesting period wondering if my baby would live long enough to wear anything at all. She did not.

IMG_0195[1]IMG_0196[1]

IMG_0821[1]IMG_0820[1]

My birth team painted premie undershirts when they gave me a Blessing Way. One of Anni’s friends, Jill Diana, who never met me painted a onesie with Mary Rose’s name on it. “She has an angel baby too,” Anni had said as she handed me gifts from an unmet sister.

IMG_0802[1]A dear friend, Lakshmi, whose son Siddha died of trisomy 18 painted a special onesie for Mary Rose. She started making these beautiful clothes to honor her holy son.

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Sindy sewed two diapers for Mary Rose. She was buried in one and I kept the other. I also kept the hat that came with her baptismal gown that my parents bought for my daughter. I wanted something to hold on to. It has the beautiful roses that decorated her burial gown. Sindy also gave us a flower for her hair. When Anni and I were preparing Mary Rose’s body for burial we put it on and took a few pictures.

IMG_0810[1]The blankets from Isaiah’s Promise are what we nestled our baby in, and they go in the box. I place a few cards on the bottom, then some comforting hearts my first doula, Raizy, sent me.   Next her few clothes, followed by her blankets, my flower crown from the Blessing Way and the baby pea in the pod that Anni brought before I labored. I also have a comb with a few stray hairs from Mary Rose’s head, the box my sister sent with a tiny cross for burial, my pink bracelet from the Blessing Way and the scroll from Edgar Cayce’s Center that I chose from a bowl when I was pregnant. It says For, every soul enters with a mission. We all have a mission to perform.

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The box still needs something. My last step is to make copies of cards that I had pulled from the Mother Mary Oracle deck by Alana Fairchild and Shiloh Sophia during my pregnancy. I glue them to the top of the box. Number 11. Our Lady of Manifest Miracles, Number 12. Our Lady of Peaceful Change and Number 29. Our Lady of Starting Over.

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The box sits on the floor of my bedroom not far from “Healing Companion.” I don’t know if making a box will help other mothers, but I think that even for babies miscarried early, we can name them as our own and make a little tribute to their lives. Perhaps there is a blanket or rattle that you purchased for the exciting day that you would meet your child. The blanket still means something, even if the child has moved on from this life so very quickly.

In her book Naming the Child: Hope-filled Reflections on Miscarriage, Stillbirth, and Infant Death, Jenny Schoedel writes “While the world we live in views tears as a sign of weakness and so often strives to avoid them…tears have long been associated with intimacy with God, with wholeness, with a courageous and life-giving openness to the spiritual world.” Those who mourn are tearful; we express our emotions and honor our loved ones on the other side, as well as our own motherhood and path of grief. This ground is holy and healing. To move forward I will stay here a little longer longing for the baby that once was in my arms, remembering her few things and the life that was, the Life that is…

My Daughter, My Angel

IMG_9851My angel grew inside me until my womb swelled and my body opened. Then she surrounded me with wings and love. My daughter, Mary Rose, lived one sacred hour. I held her in my arms and had to let her go.

Why am I still here a month later when my body is heavy with grief and milk? How do I answer the question “How many children do you have?” Dead babies and miscarriages are taboo in our society where positive thinking cures all. But this angel…

Her energy is with me. I carry my daughter in my heart.

Mary Rose’s portrait was painted months ago. In the painting I hold my pregnant belly and the angel holds me from behind. Her wings are my sanctuary. Prints of Healing Companion comfort mothers with infant losses.  Now I write to heal myself and others. We women need each other to survive and bless this planet-in-transition. We are standing on stepping stones to higher consciousness. My heart is shattered and open. I will not hide my third-eye sight and intuition any more.

Mary Rose, bless us. Thank you for sending roses and feathers as you illuminate our path.

Dianna Vagianos Armentrout

published in 365 Days of Angel Prayers edited by Elizabeth Harper and Cathleen O’Connor
© 2014