Rebekah Garvin’s “Almost” and Unexpected Grief

lightning

for Vanessa Farnsworth

Grief has a way of looping around and connecting us to different people in unexpected ways. My friend Vanessa is a young widow and today is the one-year anniversary of the death of her husband Ric. He was 35 years old when he died suddenly, the father of a baby and toddler. She is working through her grief, as I continue to work through my grief. My newborn daughter died, and Vanessa’s young husband died. Different, but the same. We mourn, and we live simultaneously. We make meaning of thunderstorms and roses. We continue remembering, tears in our eyes.

Rebekah Garvin wrote the song “Almost” the day her unborn baby’s heart stopped. Garvin writes “I almost had you. / I almost held you. / We were almost a family.” She miscarried her baby. I said something similar about family to my therapist, Adele, soon after Mary Rose died. She said “Sweet Pea, you are still a family of four. It just looks different than you thought. You still have your daughter.” I have held onto these words over the past two years. Mary Rose is still part of this family, and Ric is still the father of his young boys. Ric will always be Vanessa’s young husband. Even so, how do we negotiate this life without our loved ones on the earth plane? It is hard not to wonder what would have been.

Garvin tells us “You were given and taken / just like that. / I’ll never be the same again / just like that.” I remember that moment of confusion during my routine ultrasound that revealed several anomalies. I started thinking ahead. I had to call my sister. I had to get a blood test. I had to celebrate my son’s second birthday because I did not know what our life would be like the following year. Vanessa’s life changed in one moment too. Her husband died unexpectedly. They were the exhausted parents of young babies who had plans for the rest of their lives together.

“Now I’ll never go a day / without thinking / about what we almost had,” Garvin sings. Even though I try to stay in the present moment I see my own expectations. I expect to live for a while. I expect my son to grow up and become a man. These expectations are hard to dispel. Only the present moment is real. I am typing in front of an altar. Photos of my two favorite aunts, one living and one dead. A photo of my grandmother cleaning wild greens. A rose. A shell. A pink bracelet from Cubby. An icon. My mind wanders and I wonder what it would have been like if Mary Rose had lived in her broken body, if her body had been whole and healthy . . .

In moments of sudden change, moments of death and letting go, not only of expectations, but of the ones we love, we tell them to go. I held my daughter’s limp body in a birth pool and urged her to go and do her work. I assured her of our love for her and she met my gaze. Garvin ends her song “fly baby fly / fly angel fly / spread your wings and fly.”

It is not only the ones who travel from this realm to the next who fly. The bereaved can also fly. We can release some of the heaviness of our grief by processing and transmuting it, flying back into this present moment, into living again with joy.

Here in Virginia the sun is shining through the pine trees. Tomato plants flower. A bright pink hibiscus blooms. My heart is beating this moment and will always carry my loved ones inside. Mary Rose and Ric have flown from their bodies. Until we join our loved ones on the other side of the veil, let’s be present and offer an open hand to someone else who is suffering in grief. Let our spirits be comforted with the knowledge that our loved ones are still with us, surrounding us with love and light, in sunny days and stormy nights lighting the Montana night sky on the anniversary of a loved one’s death.

 

 

Book Launch: Why Did I Write This Book?

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Book Launch: Why a Book about Mary Rose?

Books about grief, pregnancy and infant loss have already been written. Yet when I was a pregnant woman walking around in a daze of grief after a prenatal diagnosis of trisomy 18, I did not find comfort in books, the place where I have always found comfort. Other than Nancy Mayer-Whittington’s For the Love of Angela, no book was raw or honest enough. In my state of pregnancy-awaiting-death, I wanted truth. I wanted to know how I could survive carrying life and death inside me. I wanted someone to explain the madness of grief that lasted far longer than Mary Rose’s brief life. I wanted to know that my unborn baby wouldn’t suffer.

In my pregnancy I came up against people’s judgements and beliefs about pregnancies with life-limiting diagnoses and life support for newborns. I fought the system to birth my daughter at home and give her a quiet peaceful life. I prepared her body for burial on my own bed where we held her, where she died. In the aftermath of my grief, I came face to face with our culture’s ignorant ways in treating the bereaved. Many kind people comforted us, but once I left my house cocoon and reentered life, I felt silenced and judged for grieving. Some people think that I am angry, but I am not angry. I am writing to speak my truth. Grief can take a lifetime to process. Grief is also infused with joy, as we live again.

To get to that joy, we first need tender love, a way to process our grief (I chose art), and the truth that life and death are inextricably linked. They always were. They always will be. Babies sometimes die. Women sometimes miscarry. I write Mary Rose into a book and send her out into the world to comfort women facing pregnancy and infant loss. I write to support communities – real communities – that walk together through the joys and grief that comprise human experience. Mary Rose’s book is as raw as a pregnant mother buying a casket and planning a funeral. It is as real as breath and love.

Today White Flowers Press launches Walking the Labyrinth of My Heart: A Journey of Pregnancy, Grief and Infant Death. The numbers are staggering. One in four women miscarry. One million babies die in this country before their first birthday. We all know women who have had their pregnancy losses, but most of us continue to ignore them because they are uncomfortable. This book addresses the social awkwardness that we feel around death and grief. It addresses the grieving mother, but also the family and friends that surround her not knowing what to say.

Every page of this book was watered with my tears; I kept writing anyway. I did not walk my pregnancy alone, and I do not want anyone else to be alone in that sacred space. I had my mentor Cubby, my parents, my sister, my closest friends. A therapist. A few midwives. A homeopath and bereavement doula. A son. A husband. A priest and his wife. A shaman. And the blessed nuns who pray in their little rooms for this broken world. Not every woman has a midwife to accompany her to the scariest of doctors’ appointments. How long can my baby live? What do I do next? And so I write for my readers.

In her memoir The Chronology of Water, Lidia Yuknavitch ends her book with these words:

Listen I can see you. If you are like me. You do not deserve most of what has happened or will. But there is something I can offer you. Whoever you are. Out there. As lonely as it gets, you are not alone. There is another kind of love . . . . This book? It’s for you. It’s water I made a path through . . . . Come in . . .

Yuknavitch is talking about art. The art of words and books and many media. I agree that art is a gift, but the gift is also truth and an open loving heart that loves our vulnerable babies who are miscarried, born still or die soon after birth.

After my pregnancy I did research and found out the most important thing. If Mary Rose had lived, she would not have suffered. Why didn’t my doctors tell me that? I was so anxious in that unknowing. I intend for this book to clear up the blur of getting a life-limiting diagnosis during pregnancy, for it to be a companion as we walk through the fog of grief. You are not alone. Many women have gone before you, walking this path, since the beginning of our myths and stories. And those babies who were miscarried, born still or alive, who lived a minute or a day, their souls are perfect and the stories of their lives will heal our own grieving souls.

Today on the launch of Mary Rose’s book please share this blog post, if our work resonates with you.

I am grateful for your help and support.

To purchase Walking the Labyrinth of My Heart: A Journey of Pregnancy, Grief and Infant Death please click on this link:

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Mother’s Day: Joyously Connecting with our Loved Ones in Spirit

IMG_2298for Nancy Eagle Spirit Woman

People are writing and posting about Mother’s Day and grief, about International Mothers’ Day for the Bereaved, which was celebrated last week, about the lack of response from our friends, family and community in remembering us during Mother’s Day. I have been thinking about how much importance we give one day, one holiday. I have decided to make a safe space for myself this Mother’s Day. I plan to stay home away from pregnant women and newborns who trigger my trauma. I want to be in my garden with mud underneath my fingernails. I want to be with my son, and I want to be with Mary Rose.

Instead of focusing on the separation that we feel from our loved ones in spirit, this year I will call Mary Rose to me. I will welcome her into my day as an ancestor of light and I will spend my day with both of my children. Lighting a candle is one way to remember our children. Planting a flower or plant is another. I will breathe deeply this Sunday remembering her small body, the sacred hour of her life here on earth, as I celebrate the life that she has now. I know that I will grieve my newborn’s death for the rest of my life, but I want to do so joyously. I cannot change the way that I see the world differently after holding life and death in my arms, but I can reinforce the love that deepens for my daughter. I will stay in a safe space where I can cry and remember my daughter while celebrating my continued role as her mother.

I am thinking more with my heart these days. My reality is shifting 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 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 are still our children from their heavenly place, even the ones who were miscarried.

My connection to my daughter is deeper this year. She has been at my side as I wept and wrote her book that will soon be released by White Flowers Press. I have been through another year of milestones without her physical body, but she is here.

One night my son said to me “I feel Mary Rose in my heart. My heart is soooo big from the love of my sister.” She continues to be a part of our family. She continues to be my daughter. She is an intercessor helping us in our daily lives. I won’t be able to hear her whispers over the clatter and chatter in a restaurant, so I will be outside on our Earth celebrating quietly knowing that all life has its purpose and continues far beyond the life of the human body. I will listen to the birds’ songs, and notice the peony about to burst open. I too am open. Mary Rose, come…

 

Walking the Labyrinth of My Heart: A Journey of Pregnancy, Grief and Infant Death will be released later this month by White Flowers Press.

 

International Bereaved Mothers Day, Eastern Orthodox Easter and Mother’s Day

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It is May 1st and I am with my family celebrating Pascha or Easter. According to our tradition the Last Supper was during Passover and so our holiday comes after Passover each year. It is also International Bereaved Mothers Day, a holiday meant to support women whose children have died, started by Carly Marie. Today women who have faced miscarriages, the death of a child or infertility will be nurtured and remembered. Our Mother’s Day holiday excludes many including the infertile and bereaved, so Carly Marie started this new holiday. However, I’m not so sure that another holiday is what we need. Instead we can open our hearts as a community and remember those around us who suffer from losses with those who have not. If we are united as a community then my own grief is your grief, and we can share in love and joy and sadness together.

As I stood in front of the altar of Holy Trinity Church in Yonkers, New York, this morning, I lit one candle for the dead on one side of the holy doors and one candle for the living on the other side, my two children. I thought about my trisomy 18 communities and all the babies who died in the last few weeks. Some were born still, some lived for a moment. I remembered International Bereaved Mothers Day and I had to step outside the side door of church to catch my breath. I have been walking between the living and the dead for so long now it seems that the veil between the worlds is permanently thin. I live in a space with my living and my dead.

Next Sunday, May 8th, is Mother’s Day in the United States. I will stay home with my son and garden and go for a walk. I will remember Mary Rose and my son next Sunday, as I do every day. I cannot separate my own role as a mother to that of a bereaved mother today to celebrate Carly Marie’s day of remembrance, and then celebrate as a joyful mother of a living child next Sunday. I am one woman, and I wish that our culture could operate as one body where we can share our lives with our fellow co-workers, parishioners, friends, family, etc.

Who is the God does wonders? we sang in church today. Our God, our God, our God is so great who does wonders, we reply. Is Mary Rose a wonder of God? Is my dear, living son? I rejoice often that I was chosen to bear Mary Rose, and the grief that I live with, and will continue to live with, is the price I pay for being her mother. I rejoice often for my dear son.

We also sang Let us embrace each other joyously! this morning. This is my hope and my prayer for Pascha, for Mother’s Day. I pray that we can embrace each other joyously in both our sorrows and our joys. I pray that we develop communities that support each other united as one body, instead of comfortably staying in our cliques and rejoicing with new mothers of healthy living children while bereaved mothers and infertile women feel marginalized. We cannot only support people in their joy. We cannot only offer condolences in the aftermath of tragedy. Grief takes time to work itself through. We are all a part of this earth at this particular moment in time, and we can only heal together. May we learn to sit with each other in sorrow and in joy. May we offer love and tea. May it be so every day of the year.

 

For last year’s post Mother’s Day for the Bereaved click here: http://www.diannavagianos.com/blog/?p=95 I discuss celebrating with our loved ones who have died and connecting with their spirits.

Interview of Lakshmi, Pregnant with Siddha, Baby Diagnosed with Trisomy 18

I hope that readers find comfort in this video that was so comforting to me when I was pregnant with Mary Rose. I watched this video again and again, seeing Lakshmi, a mother whose unborn baby was diagnosed with trisomy 18 at 20 weeks of her pregnancy. I remember sitting at my dining room table after my son and husband were asleep weeping. Lakshmi was preparing herself to birth and let her son go. Shiloh Sophia McCloud, says “This tragedy is becoming a blessing.” She asks Mother Mary, “The Great Lady,” to bless Lakshmi and she did. Her son, Siddharta Izarra was born living on April 10, 2014 and stayed for a few days. I will be writing more about community now that Mary Rose’s book is done. Here we see a circle of women. I hope that each of us can be a part of a tribe and both receive and offer love and support as we live through various challenges. My virtual arms are open to families who will let go of their beloved babies too soon. And thanks to technology Lakshmi and I have become friends through Facebook. We are both blessed as we continue to walk our paths after loving, birthing and letting go of our babies. They are with us still…

For Nora, Who Gives Us Hope.

428881_3634519710730_691058417_nA few months ago  Lauren contacted me on my blog and shared her home birth story about her daughter, Nora, who had trisomy 18. When I wrote back I assumed that Nora had passed away like the other babies with this illness that I know. Nora is fifteen, Lauren replied. I was surprised and grateful that Lauren answered my questions. Yes, Nora has full trisomy 18. Yes, Nora breathes on her own. I was so touched by the story and by Lauren’s openness with me that I dedicated a blog post to Nora. “Trisomy 18: The Range of Possibilities” for Nora, who gives us hope.

Lauren wrote to me on Easter Sunday to tell me that Nora transitioned to her next life on March 16th. She passed away peacefully at home, where she was born, surrounded by her mom, dad, brother, and sister. We laid her out at home afterwards, Lauren wrote. Nora was buried in a natural wood cocoon decorated by her family and friends who visited. (See below.) I sense Nora’s gentle spirit and I love the  way that her family handled her body and burial. Soft. Holy. A gentle ritual for a beautiful daughter, sister, friend.

nora cocoon

My book about my pregnancy with Mary Rose is almost done. I hope to turn in the very final draft by the end of this week. Nora is a part of my book because her life touched my life in that special we-are-one-with-everything-in-the-universe way that the mystics speak of in different spiritual traditions. I used to be surprised by the synchronicity of my life, but now I just smile and say, Thank you. I am now friends with my Isaiah Promise mentor Cubby’s daughter, Mary Frances. I am friends with Laura, a woman I had seen at the Farmers Market when I was pregnant with Mary Rose. Everywhere I turn I am connected to others by beautiful threads of light.

It is not only the Hindus who say that life is a dream. My maternal grandmother used to say, Η ζωή είναι ένα όνειρο. Life is one dream. It won’t be long before we are all together with our loved ones on the other side of the veils. Until I meet you at the holy gate, Nora, please give Mary Rose and Cubby a hug from me and Mary Frances. Thank you for your far-reaching Light and presence in our lives.

 

Photos used with permission of Lauren Sample.

Meeting Laura: Synchronicity & the Heart

IMG_1101I see a woman in a wheelchair at the Farmers Market. She looks different. Her limbs are not like mine. Behind her walks a woman. I assume that this is her mother. I am pregnant with a baby who will die of trisomy 18 and I put my hands on my womb as I watch these two women going through the market. It is summer in Suffolk, Virginia. Could that ever be us? Would my baby live long enough to be in a wheelchair? Would I take her anywhere at all? I think about my unborn daughter’s weak muscle tone, the multiple defects in her heart and brain. No, I decide. Mary Rose and I will never share a morning like this.

Have you ever seen someone who stays on your mind or in your heart for months or years? I wanted to say something to this woman at the Farmers Market, but I was perpetually near tears. What could I say? I sent love to both women and tucked them safely into my heart. A few months ago I got a Facebook message from Laura Robb, the woman I had seen in the wheelchair that summer of 2014. I looked at her picture in disbelief as I read the message from a fellow writer. She said that she lived a block away and so we met for a walk.

Since carrying Mary Rose, I am more sensitive to people who are different. I notice children on the playground with Down Syndrome. I make eye contact and engage as best I can in each moment. But meeting Laura has shown me how judgmental I am. I made assumptions about her mobility because she uses a wheelchair. Laura is teaching me to stop my mind from categorizing everyone I meet. This is our brain’s function. We want to put people in boxes and categories so that we can make sense of the world around us.

Only I can’t make sense of why almost everyone in my circle has given birth to only healthy babies except me. I can’t understand why my former student’s brother and young niece and nephew were killed in a car crash in Connecticut. I read Mother Gavrielia again. “If God wills it or allows it,” she says, “then it is the best thing for our souls.” There are moments when I can accept her words, but not always. What I do understand is that our planet could use more compassion. I have written a lot about support for the grieving, but what about the babies, children and adults who live, look and act differently from their peers? How do we support the parents whose child screams during liturgy because of a diagnosed disability? Do we offer help or ask them to remove their child from its community?

I asked Laura to forgive me for not inviting her into my house when we walked that first time. I assumed that she could not climb the two steps into my home. I was wrong. Laura recently launched a beautiful website that says “It is time for you to live beyond your limits.” We are both writers. We both blog. We both order greens from Neighborhood Harvest and we live in the same neighborhood. To look at us, you would not think that we have so much in common. Laura is on the paleo diet and I drop off a paleo pecan cookie.

If we as humans sit with those whom we judge, the ones who make us uncomfortable, even people whom we shun or hate, we would find commonalities. Who knows what we have in common with immigrants, Muslims, disabled adults and differently-abled children? What about our neighbor whom we barely wave to as we continue on with our busy day? Opening my life and heart to include Laura blesses me with her exuberant energy and light. I am changed. We can be better together. We can grieve and love together.

Let’s start by looking into each other’s eyes. If we still the mind, then we can be guided by the heart.

 

To read more about Laura Robb please visit her website www.lauracrobb.com

Photo Credit: Jean Robb

she is transformed

angel light 2

she is transformed

for mary rose, august 2014

 

i walk to my daughter’s grave

the day after her birth

(she isn’t suffering)

 

my milk     her milk     isn’t leaking yet

     it will demand the newborn’s open mouth

 

my breasts will ask where is my baby?

again and again

 

i pick up a grey feather from the grass

 

her soul soared out of her broken body

 

heal me now

my angel, mother me

The Rosa Mystica: A Few Words about Cubby and from Cubby on the Four-Month Anniversary of her Death

Cubby Rosa MysticaI have written about Cubby LaHood, my mentor from Isaiah’s Promise, a few times. Today I want to hold the space to remember her in her own words. I am so blessed to be one of her last moms that she mentored through a pregnancy with a fatal “diagnosis” earth-side. I’m sure that she is helping many from the heavenly realms. Following is a brief excerpt from a longer chapter in my forthcoming book.

Cubby’s son Francis Edward died after birth of a kidney disorder. As a mentor, she offered me guidance based on her own experience after dedicating decades of her life in service to others. Many people offer the platitude “I know what you’re going through” with no such knowledge at all. Cubby did know. She had walked through the difficulties and knew how we felt. Her words reverberate still with incredible love and kindness. She wrote me many e-mails from the time that she offered support through Isaiah’s Promise until her death.

E-mailing Cubby was so good for me because I would weep and write when I could not sleep. I couldn’t speak on the phone because I would cry and couldn’t talk. I often told her about my concerns with the pregnancy. In May I write to Cubby about how hard it is to be in my pregnant body during the pregnancy. I tell her about my anxiety and worries for my unborn daughter. She responds

May 26, 2014

Yes, the suffering is what we all worry about so much. Its like a catch 22, we want them here with us, but we also want God to take them. You must not feel guilty, you have carried her because you love her – in life we all suffer in some way, even a healthy child suffers along the way. It is just that Mary Rose will have all the joy, love, and suffering, in a short period of life….With all the babies I have helped deliver – I have not seen suffering. It has always been very, very peaceful, like falling asleep. Even with Francis, it was slow and peaceful and I was not afraid. We held him always. You won’t need any equipment because you will not be putting her down.!!

Mary Rose deserves dignity…she will always live in your heart. She will give you strength.

I confide my feelings to her many times between May, when we began to correspond, and Mary Rose’s birth and death on August 8, 2014. She responds again

May 31, 2014

Oh My Friend – I know how hard it is…I would stare out the window at our swing set and weep, knowing my son would never play there…However, the closer I got to delivery, the more I became calm because I wanted to MEET him after all those months…I wanted to hold him and love him even if that was all we could do…I was HIS mother and I would cherish him every second. All of my fear and doubts would ebb and flow, but on delivery day I was only ready for love. I really prayed hard for strength. God gave me this baby son – if only for a few minutes. And I was going to love him…

June 18, 2014

YOU are stronger then YOU think – right now it is all the unknowns that make life so tedious – After birth, things will fall into place – even though you sense that Mary Rose’s time will be short – you must begin to look forward to meeting her – whatever the outcome. Love and letting go will be a part of it – but nothing is more important then love…

In the meantime – we will keep praying for you, especially for strength – and remember LOOK forward to meeting her – God has given you a great gift.

When I was still pregnant with Mary Rose she told me about the Rosa Mystica. It was June and Cubby was sick, but I did not know that she was sick yet. She didn’t tell me that she had stage 4 cancer until the fall. Cubby did not want to burden her mothers with her problems. I am taking care of the Rosa Mystica she told me. I googled Rosa Mystica and found out about more miracles of Our Lady, learned that the rose is her flower. Mary Rose. I didn’t know the significance of the name that entered my heart when I was pregnant. I believe that Cubby had the statue in her home, that there was to be a prayer service that night. I will pray for you and Mary Rose she told me.

And she still does.

 

Photo credit: Mary Frances LaHood. Cubby seated with her friend Kathy Schaef near the Rosa Mystica.