Category Archives: Pregnancy & Fatal Diagnosis

On the Fourth Anniversary of My Newborn Daughter’s Death

          for Eva on her first birthday not on this Earth

Grief hits me as hard and suddenly as the hail storm pelting the garden I grew from seeds. Four-year grief builds with the moisture of the Gulf of Mexico that collides with the weather of the Rocky Mountains creating summer white groundcover of hail. My fairy garden strawberry plant sits in the white of hail. Tomato plants are pelted and bruised, limbs broken, leaves dying from the impact. Delicate string bean leaves with holes, sunflower leaves also broken. The 37 rose bushes on, what my son calls, Rose Way, look weak and sad. I am stunned by the fierceness of the winds, so many leaves from the trees down, but I get to work, my fingers frozen and muddy as I scoop out the round cold hail from newly planted strawberry plants. Will they make it? I wonder.

Later in the week I harvest three zucchini and cucumbers, a handful of string beans and the two strawberries left after the storm. Tender dark leaves of lacinato kale. My humble harvest. They are all marked where the hail bounced off of them with force.

And then as August approaches I weep uncontrollably in the darkness of the night, as I did when I was pregnant, and knew that my baby would die. My son is asleep after he asks me again if we can have another child, my husband’s c-pap machine whirrs. Why so many tears at the four-year mark?

My sister brings me a beautiful copper-plated aspen leaf ornament from Breckenridge. It’s not a birthday present, she says, It’s more of a remembrance.  Terry whose two beautiful daughters died of cystic fibrosis leaves a message. And as August 8thapproaches, all night I dream of meeting Lori, mama of sweet Eva, whose older brother lives and thrives though grief batters their family as well.

What do you do on Mary Rose’s birthday? my neighbor Angela asks, as her baby girl proudly toddles around the yard. I tell her I need quiet. I shore up in stillness and protect my heart with kindness. Only those who can love a mother bruised by grief can come near. I say no to volunteering at school this week though we are moving into a new building. No to crowds of people chatting. No. No.

But I have to get by, have to walk through the days. I remember feeling this way when the contractions swelled in my body for days, when I labored and then was emptied of my baby girl.

I have buried many this lifetime.

My son wants to make a pistachio cake with rose buttercream. Cake, I think. Cake for a dead baby’s birthday? I will make cake for my living son on my daughter’s birthday.

Dirt soothes me. I plant another rose bush, a butterfly bush, some coreopsis on Mary Rose’s birthday. I plan to thin the irises and surround myself in their bearded blossoms,  plant new bulbs that will surprise me in spring, but it takes hours to plant a few plants in the Colorado clay soil. I am limited in what I can accomplish this summer. I amend some of the soil with my own compost and planting soil. I bless each plant and hope it blooms in the coming years.

For those who think that this grief signals a lack of acceptance – life is not an either/or situation. I accept my daughter’s death from trisomy 18, and I will grieve her with my body and heart until I die because I am her mother. Because we are one with the Earth that also lets go and grieves. I am true to her memory and her daughterness. Though people would tell us that we should move on, I am here holding space for my daughter and my grief. Space for my living son with his losses and milestones. Space to do this work of grieving and being in the reality of both great joy and sadness simultaneously.

On my daugher’s birthday and every day I pray, Mary Rose, my daughter still, I love you.

A Transcendent Experience of Life and Death

I was interviewed today by Kelly Meehan-Tobatabo of Spirit Baby Radio. We shared our perspective on grief and loss and moving our pain towards the light. Click on the link below to listen to our conversation.

http://spiritbabyradio.libsyn.com/

How the Bereaved Celebrate the Living

Since my daughter died, we have celebrated birthdays and holidays, our son’s milestones and my husband’s retirement from the military. It is two and a half years later, and it still hurts. We feel the emptiness of the space where her body once was. How do the bereaved celebrate the living when our hearts are sometimes still heavy with grief?

In December we moved across the country to the Denver area. We left Mary Rose’s house. We left the place where our toddler became a boy, and now at the foothills of the Rocky Mountains, we celebrated our son’s fifth birthday. We celebrate with an excavator cupcake truck at a party with his first cousins. But we miss Mary Rose. We continue to mourn, even as our love for her continues to grow.

How do we celebrate life after loss? My heart is a basket that feels hollow after my loved ones die. How can I fill my basket? How do we gather the courage to celebrate joyously for the living and the dead?

I cry almost every day, remembering Mary Rose and the others. But I also cook and write cards. I spend time outside walking and breathing, noticing my surroundings and the creatures that share my habitat. I breathe in the dry mountain air in wonder. I think of my bedridden aunt who died before Mary Rose, and I am grateful that I can walk. I am grateful for my living family. I bake. I read. I treasure my relationships, especially getting to know my sister again now that we live close to each other for the first time in 14 years. I do all this while I remember. I celebrate the living and the dead, because they are all in my heart.

I teared up when we sang Happy Birthday to our son because he is growing up, and because Mary Rose never did. I feel her close to us, but I still long to hold her in my arms. It is hard to be on this earth and be joyful after a death, but we can do it if we walk together in unity with all those we love, living and dead. It takes great courage to hold both grief and joy in our heart. I suspect that as the years go by, grief does not become easier. It feels like being in the ocean where you never know when there will be a big wave or calm sea. I still can’t predict a riptide that takes me back to the rawest grief.

I’ve been missing my aunt as much as Mary Rose through this move, the holidays and our son’s birthday. Tonight I told my son a story about her while we snuggled together at bedtime. I told him that our Thea Matina was a principal of an elementary school, and that the children had a hard time with her name, Cacomanolis. I told him that the kids sometimes called her Ms. Cacamanolis. There is no kaka in my name, she told her kids. They laughed, and they said her name correctly. My son laughed and laughed until no sound came out, and she was there with us in that moment.

This is how I choose to walk. I carry the ancestors into our future through our stories and memories, through prayers and love. Each new celebration and milestone includes them, as long as we remember, and give thanks. If our friends and family could join us in weaving our dead through our lives, we will be more whole and connected. Crying is just fine, because there is so much joy around us…

 

 

Do. No. Harm.

I was recently on a Facebook group page honoring Ina May Gaskin, the pioneer home birth midwife. A mother at the end of her fourth pregnancy wrote about having nightmares after seeing a post about a baby who died at home. This mother was looking for comfort and sympathy. She never mentioned the specific post, but I had posted my home birth story and a photo of my daughter who died of trisomy 18 after birth months ago. I wasn’t sure if my daughter’s photo was the one that gave this woman nightmares, but I got upset, as did another mother whose daughter died a week after birth. As with so many of our social media forums, this post got ugly. A birth worker admonished the bereaved mothers to “do no harm.” We could grieve, but it would be more appropriate to go someplace else. Our birth stories that ended in death had no place on a forum about birth. Our pregnancies, labors and babies are not welcome here. One woman wrote that she believed the referenced post was meant to be incendiary and had been removed, but I’m still not sure.

The numbers of pregnancy and infant loss speak volumes. One in four pregnancies end in miscarriage. One million babies die each year before their first birthday in the United States. Where are bereaved mothers to go? Why is our reality not a part of our cultural discussions of new mothers? I believe that we can form strong alliances and communities where our culture becomes loving enough to celebrate our babies and their short lives. In my dreams, I am embraced in my grief, instead of ignored.

The Baha’i Faith speaks of unity. We cannot have Christianity without Judaism. We cannot have light without the complicated shadows that also live inside each human heart. There is no life without death. Bahá’ulláh says “Of the Tree of Knowledge the All-glorious fruit is this exalted word: Of one Tree are all ye the fruits and of one Bough the leaves (53). All mothers, regardless of outcomes are one body, yet we continue to put up barriers and separate ourselves from each other.

The cultural concept that pregnancy always ends in happy mothers nursing healthy babies does not serve us. We must be brave as we face each pregnancy, each child, because we do not know the outcomes. A healthy living baby does not have more value than a child who dies. I know. I have one of each. If we measure our lives with love, then each soul has a place at the table of the heart.

I have much to celebrate each day, including my sweet daughter, whose life continues to encourage and help others through my book about her impact on my life, Walking the Labyrinth of My Heart: A Journey of Pregnancy, Grief and Newborn Death. But my tender heart continues to grieve when I watch my son play alone, negotiating his reality of why his sister died. My eyes tear up when someone asks me again how many children I have.

I wasn’t sure if I should address this situation, and one birth worker, on my blog, but I was so disappointed in the way that the comments came rolling in, and I was not the only mother offended and hurt. This post is my response to the birth worker who believes bereaved mothers might upset pregnant women. First do no harm, she replied to me again.

I will continue to do no harm by speaking up and writing for my sisters who are infertile, for mothers with no living children, and for those of us who carry our deceased babies in our hearts every day and every hour. We are one body of human sisters and need to unite in community to support one another.

I will continue to do no harm. How about you, Sister?

 

To read my original post that I shared on the Ina May Gaskin Fan Page click here: http://www.diannavagianos.com/blog/?p=269

Work Cited

Esslemont, J.E. Bahá’u’llah and the New Era: An Introduction to the Bahá’i Faith. Wilmette, IL: Bahá’i
Publishing, 2006. Print.

 

August Book Giveaway on Goodreads

cover

 

Mary Rose’s birthday month is here and we are offering eight signed copies of Walking the Labyrinth of My Heart: A Journey of Pregnancy, Grief and Newborn Death this month on Goodreads. Enter to win a copy by CLICKING HERE:

Goodreads

 

 

Angels in our Midst

Healing Companion400x800CaptionThis essay first appeared as a guest blog post for SpiritualLiving.com in August 2016.

http://www.spiritualliving.com/#!Angels-in-our-Midst/cmf6/579679c00cf2be2e0b931f15

Angels. We often use this word to describe babies, and I have heard people say that the dead have become angels. Are all babies angels? Does every soul earn wings when she dies? My newborn son who had colic and couldn’t nurse did not seem angelic, though he was, and still is, sweet. An alcoholic did not seem to transcend all that he was while living on Earth after death. Yet those who mourned him extolled his virtues, forgetting the empty bottle, the raised hand.

When I was pregnant with my second child, the routine ultrasound revealed several anomalies. My unborn daughter, Mary Rose, was diagnosed with trisomy 18. She would most likely be born still or live for a short while, though there are about 200 children and adults living with this illness in the United States. People began to call Mary Rose an angel baby. I wasn’t so sure. My friend, the artist Sindy Strosahl, painted Mary Rose behind my pregnant body as an angel before she was born in the painting “Healing Companion.” When my daughter was born in a pool beneath the painting, we noticed that she looked like the angel. She died in my arms an hour later.

One night my three-year-old asked me if Mary Rose is an angel. What do you think? I replied. I think that she is an angel with big wings. I feel her here, he said touching his heart center with his little boy hand. Mommy, does everyone who dies become an angel? he asked. I don’t think so, I said. My sister, Mary Rose, is an angel, he repeated. He knows of many ancestors on the other side of the veil: my two grandfathers, his paternal grandmother, my dear aunt. Yet, he only called Mary Rose an angel until recently.

I was speaking to my friend, Mary Frances last week. Her mother, Cubby, was my mentor during my pregnancy, and died in September. My son, now four, said, Cubby is an angel too. Then he said, But Heather and Holly are even biiiigggger angels. Heather and Holly are the daughters of my friend Terry who died of cystic fibrosis at 12 and 22 years of age. Does my son feel the angelic presence of these beings? Can he feel their work answering prayers and healing us and guiding us from the heavenly realms? When I was writing my book about Mary Rose I felt her on my right shoulder and Cubby on my left shoulder. They were helping me to gather the courage to finish laboring my book about my pregnancy.

I understand that newborn babies have a sweet, holy energy. They emanate unconditional love, as they come directly from the Creator’s hands. I also know that souls can be healed after death, that vices and challenges of spirit can be transcended as the soul continues to evolve. I can’t quantify the difference between a guardian angel and Mary Rose, but I know that they are both helping spirits from the angelic realms.

Angels are in our midst. We can channel their light into our lives and onto this great planet. Light shimmers and illuminates the darkness. It is far reaching. When we are in the presence of angels, such as Mary Rose, who was born and died on August 8, 2014, we are healed. We miss our loved ones and are broken open in our grief to love again and again.

I will continue to ask Mary Rose and Cubby for help. I will honor Heather and Holly in my prayers and in my heart. And I hope to be able to reach out my hand and offer love in the spirit of the angels to others who are grieving. Let’s do this together, with the angels’ help.

Grief Diaries: Get Your Grief On

grief diaries loss of a pregnancy covver

Grief comes in so many forms, both visible and invisible . . . . Until now, there was no book series dedicated to sharing and embracing all the various life struggles. By publishing our stories, we help others who share our journey feel less alone. In turn, our stories help raise awareness and educate, which paves the way for better support.       Lynda Cheldelin Fell

I came to Grief Diaries through Mary Potter Kenyon. Mary was one of the first readers of my book, and kindly supported my work. Her own book on grief, Refined by Fire: A Journey of Grief and Grace, was good for my soul after my newborn died of trisomy 18. I reached out to Mary and we connected through love and loss. She messaged me one day telling me that she was working with Lynda Cheldelin Fell on a book of poetry and prose for Grief Diaries. Would I submit some of my poetry? I agreed, and then wrote to Lynda. After hearing about Mary Rose, she asked if I would write for a new anthology called Surviving the Loss of a Pregnancy. Mary Rose’s story, or rather my grief journey, is in this book, as well as Grief Diaries: Loss of an Infant.

Lynda’s daughter, Ally, was killed in a car crash at age 15. Two years before Lynda had a dream that her daughter died in a car accident. In the dream an open book appeared where Ally’s body was. Last summer Lynda began collecting stories of bereaved people whom she met at a convention. In one year Grief Diaries has published several books with many more titles on the way. Lynda says that “the individual stories highlight the spirit of human resiliency.” Her focus is on telling the stories of our grief. “When we share stories, our written words become a portable support group for others,” she says.

Lynda has created a community of bereaved who are writing to help others. Grief Diaries books address various losses such as the loss of a child, spouse, loved one by suicide, and many more. She has published My Grief Diary: A Workbook through Grief, A Companion Guide & Confidante through the Aftermath of Heartbreaking Loss with writing prompts to help a grieving person start to make sense of great loss. I like the list of what not to say in the book How to Help the Bereaved. I wish that we could pass out cards of “A toolbox of what not to say . . . and why.”

Grief Diaries read as diaries do. The writers answer questions about their experiences, so each chapter focuses on one question or aspect of the loss. The entries are not essays, but rather a record of what we went through and how we coped. There is rawness. There is love and beauty. Every page in the book Surviving the Loss of A Pregnancy is about loss, and it is a tough read. It would be most appropriate for someone who is in the midst of grief, someone who will be comforted by other people’s suffering. For those trying to become pregnant and move forward from pregnancy or infant loss, I would advise waiting to reading this collection. I would not want this book on grief to discourage a woman who is pregnant, who has hope that everything will be fine. In the midst of our grief we might forget that most pregnancies have good outcomes, and that most babies thrive.

In my introduction to Surviving the Loss of a Pregnancy, I write “I hope that this book will shift that aloneness [of pregnancy and infant loss] as we build bridges that connect our grief. Instead of one more lonely and depressing birthday, anniversary of the due date or holiday, I hope that Surviving the Loss of a Pregnancy will offer a way for us to connect with each other, and the spirits of our babies . . . .” As I continue to write about my own experience I meet people who are dealing with the unsayable. Another miscarriage, another fatal diagnosis, another death. It is important that we create a web of light (as Sandra Ingerman instructs us in her Transmutation News website) to catch the bereaved as they fall down, to connect to other humans who are suffering. We are more similar than we are different. In the awakening that comes after such depths of darkness, we notice the sunshine and the birds singing. They were there urging us on all along.

 

To read my introduction and more of my story and purchase Grief Diaries: Surviving the Loss of a Pregnancy CLICK HERE

To purchase Grief Diaries: Surviving the Loss of an Infant CLICK HERE

Grief Diary books are available on amazon.com. To find out more about Lynda Cheldelin Fell, her website is www.lyndafell.com. To submit to forthcoming Grief Diaries anthologies visit www.griefdiaries.com.

 

Book Launch: Why Did I Write This Book?

cover

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:

ws-na.amazon-adsystem.com/widgets/q?ServiceVersion=20070822&OneJS=1&Operation=GetAdHtml&MarketPlace=US&source=ac&ref=tf_til&ad_type=product_link&tracking_id=diannavagiano-20&marketplace=amazon&region=US&placement=0982117647&asins=0982117647&linkId=ZLH3BXNGWZNPQLNF&show_border=true&link_opens_in_new_window=true

 

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…