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.

Homebirth and a Fatal “Diagnosis”

IMG_0011Tell people: A woman’s confidence and ability to give birth and to care for her baby are enhanced or diminished by every person who gives her care, and by the environments in which she gives birth. from Home/Birth: A Poemic by Arielle Greenberg and Rachel Zucker

 

I have two friends who say that they each know two babies who died at home because of a midwife. I’m not sure who these babies are and what the reality is. Babies die, though we like to pretend that they do not. They die in hospitals and they die at home, though thankfully most of our babies live and thrive. I chose to birth my babies at home and it still surprises me to watch people’s responses. Homebirth makes people uncomfortable. I believe that every woman has the right to make her own decision about where to birth. If I would have been better served in a hospital, I would have birthed there, but I preferred to be in a quiet place with lots of time to let my body do what it had to do as the gateway and entryway for my children’s lives.

Initially I thought that I had to have a hospital birth for Mary Rose because of her trisomy 18 “diagnosis.” I lost my footing after that life-changing ultrasound. My midwife decided to leave her practice and I was going to get to know the midwife, Grace, who would take over. My son wasn’t sleeping through the night. He woke me at least two times each night and refused to nap. I was already in a fog from exhaustion when the ultrasound technician tensed up and the lights went out and I had to feel my way step by step to get to the other side of the pregnancy.

After a “diagnosis” like trisomy 18 there are several doctors’ appointments. I went for an ultrasound of the heart because my daughter had a severe heart defect. The hospital wanted monthly ultrasounds, but we refused this monitoring. Not a week after our ultrasound we got a phone call from a peppy woman who was conducting a research study. She basically said I heard your baby has trisomy 18. I would like her blood which we can extrapolate from your blood. You’ll get a $25 Target gift card for your blood. No thank you.

From there we visited a kind pediatric cardiologist. I believe this doctor to be a man of faith, a man who got the big picture of life. He did not recommend surgery for Mary Rose even if she was born alive. He would work with us to give her some medicines to keep her comfortable but said that she probably would not live as long as three months in the best circumstances. The cardiologist cleared me for a home birth and wrote a letter saying as much. I visited again with the high risk OB/GYN towards the end of the second trimester and was told that I was not at any additional risk due to Mary Rose’s trisomy 18 “diagnosis.” Although she prefers a hospital setting, she did not object to a homebirth. We then visited a neonatologist who was kind, except for one thing. When he described the defects of trisomy 18, he said “she’ll probably look cute to you.” Babies with trisomy 18 are often described as elfin since they are small and have many defects including differently-shaped ears.

It was a whirlwind of information, not enough information, medical appointments, stress, and uncertainty. That range of stillborn through a few months made it difficult for me to prepare myself emotionally. I slowly got a few things ready. My sister sent me very few newborn clothes that my niece wore two years earlier. Isaiah’s Promise sent hand-made blankets and gifts. I had a baptismal gown ready, and how I hoped that Mary Rose would be baptized, not because of any sin she had, but because I wanted to welcome her into our faith with the sacrament. I got the pump out and bought bags to freeze milk. I bought a premie car seat in case we did end up at the hospital and she was too small for my son’s infant car seat. Every time I walked through Target or Babies R Us I wept and tried not to look at the pink cloud of baby clothes. I bought a few undershirts and pink socks. I vowed to do right by my daughter in life and in death. That meant buying a cemetery plot and a coffin, and deciding if we would put her on life support. My husband and I agreed that we would not extend her life briefly with machines. It did not feel right for our family, though I know families who choose differently.

I thought that we would be fine for our homebirth but there was a lot of drama with a nurse manager at pediatric hospice who thought that I wanted to kill my daughter because I didn’t want to put her on life support. She threatened my midwife telling her that the police could charge her with manslaughter if Mary Rose died at home. She turned our pediatrician against us discussing the legal ramifications of Mary Rose’s dying at home. (After checking with the neonatologist and the pediatric cardiologist, they confirmed that Mary Rose’s case was sealed tight with thorough records, that this would never happen.) The pediatrician was initially comfortable with coming to the house for a visit to diagnose Mary Rose with the trisomy 18, but then he would not come. This nurse manager even took the Do Not Resuscitate order (DNR) hostage. The pediatrician was supposed to mail it to me at home but she called him and made sure that he sent it to hospice instead and would not release it until I promised to birth in a hospital. I needed a DNR, a doctor willing to come to the house if she died before we could get to a specialist, and a licensed midwife. I prayed and hoped that these three pieces would come together. (In hindsight, neonatal hospice would have been more appropriate for our needs since pediatric hospice does not understand neonatal illnesses well.)

The tidal wave that hospice brought to my life after I already had things in place for a homebirth speaks to the way our society operates. There is a system in place and everyone is expected to follow it. A homebirth is unusual for most, and so is an infant with a neonatal and fatal illness. Pediatric hospice is very helpful when children are on life support and are facing death. The nurse who was so uncomfortable with my case was operating from a place of fear. She was afraid of homebirths. She thought that Mary Rose would suffer in her death which is not the case with newborn babies with trisomy 18. Instead of educating herself on neonatal illness, she went to war with me and used every pawn she could by trying to instill fear in the midwife and the pediatrician. The pediatrician bought into the fear of lawsuits. Thankfully the midwife, Grace, saw through it.

The controversy with homebirth is real but I am not writing a pro-homebirth piece here. I am writing to say that if a woman has birthed at home and wants to do so again, it is still an option. If a mother doesn’t want to ride the tide of the system, then she is on a raft battling the waves that are trying to take her with them. I was not prepared to have my daughter subjected to tests such as ultrasounds at birth. The hospital wanted her cord blood. And when she died she would have to go through the morgue. “What about religious Jews, Baha’is and Orthodox Christians?” I asked. What if your religion and belief is to take care of your own dead. No one knew anything about this. I wanted to prepare Mary Rose’s body for burial myself. The priest had the casket. We had the plot. I wanted her body released to me. No embalming. No refrigerator. My baby would go from my arms into the church. The doctor answered No exceptions. This has never come up before. We don’t know. We just don’t know.

I felt like I was asking permission to birth on the moon, to send my daughter’s body to the stars in a rocket. My wishes were simple. In the event that we only had a few minutes or a few hours or even a few days, I wanted to hold my daughter quietly and give her a peaceful life. I was not judging the current system, or telling others what to do. I wanted this simple thing for my daughter. I wanted my son to meet her and hold her. I wanted the peacefulness of home. On my 42nd birthday my son got sick, my back was completely out, my mother was coming in three more days to help us, and on this day I found out that I could not birth at home due to hospice’s interference. It was early July. I was exhausted emotionally and thought that we had already done the work to get to the end of a pregnancy to wait for the baby. We had a birth plan, lived a few minutes from the hospital, planned a funeral in utero, and were as ready for life or death as we would ever be. I agreed to the hospital birth so that the nurse could give me the signed DNR. Then I decided that there had to be another way.

We finally found a doctor who would come to the house to diagnose my baby or to pronounce her dead. A child cannot technically be diagnosed until she is born. We were all set except that I was having contractions for three weeks but not progressing into active labor. I was stuck. How could I go through labor only to bury my baby? What if she was severely deformed? Would I love her? Yes! Yes! I wanted to nest, but I couldn’t. I got distracted when my family visited to meet Mary Rose. She waited. They went home. August came as the contractions kept steady.

After Mary Rose was born I did some research and tried to find cases of homebirths for babies with trisomy 18. I only found one case in England. There were several women who started birthing at home but they ended up in the hospital when they did not dilate. And for me, if I had another midwife who was less experienced or afraid, I would not have been able to birth at home. Grace gently used natural ways to encourage labor when I stalled. Perhaps the placenta and baby with trisomy 18 defects do not give the body the proper signals. We have to consider the emotional response to our outcomes too. A woman in labor stands at the threshold of life and death. The soul is born and takes its first breath. It is a holy moment. I knew that Mary Rose would leave us. I hesitated. I did the best that I could.

I am grateful that I had several small miracles to allow me to birth my breech baby in a pool and hold her for the moments that were her life. She was barely breathing at birth and after the placenta was birthed she slipped away. Mary Rose was born under the painting “Healing Companion” surrounded by a quiet and profound love. Her birth was a visitation that transformed those few people who were present. The veil thinned and Mary Rose was born twice, once into our world and once into the next one where she is Light. She was not baptized, yet we were transfigured.

I am not telling my story because I want all women to give birth at home, and I respect the surgeons and hospital staff who help the babies who need them. However, for the mother who has known homebirths and who wants to birth a trisomy 18 or 13 baby at home, please know that it can be done with a willing midwife who is knowledgeable and experienced. The medicalization of birth is another story. Our high infant mortality rates and high mother mortality rates in the hospital setting can be discussed at another time. If you are called to walk through a pregnancy with a fatal “diagnosis” please make your own decision and allow for any possibilities. My midwife says she wants people to stop being afraid of these babies. They live the lives that they are given, and in their defects they teach us to be true to ourselves and our path. I told my sister that my experience with Mary Rose felt like my life was put in a centrifuge and when everything stopped spinning I couldn’t see anything in the same way anymore. Mary Rose focused me, broke me open to love more, to notice the yellow butterfly going by and the light coming through the pine tree. In our tiny fragment of time together, there was profound truth and mercy. These babies are holy wherever they are birthed.

Photo credit: Sindy Strosahl.

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.

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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…

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.

The Power of Mourning

POMCropWhen I play superheroes with my nephew he declares me Wonder Woman; my name is Dianna after all. I wear two bracelets that protect me and give me power, and I spin around and let my hair twirl. He is Superman and together we can fight evil and save our planet from destruction. I remember watching the TV show, Wonder Woman, as a child. How could my sister and I not love the amazon princess with her invisible plane and lasso of truth? She is beautiful with her long dark hair and she doesn’t need a man to save her.

This July my husband and I took two nights to go away without our son. We became pregnant soon after we met, and our life together has been about being parents. I booked the Rose Room at Shorecrest Bed and Breakfast in Southold, New York, only a few feet from Bayberry Lane where my grandparents built a house in the 80s. My childhood summer memories are there on the North Fork of Long Island where my sister and I would walk to Town Beach along a busy two-lane highway while my yiayia, or grandmother, muttered, “Mesa, mesa, trehounai ta kara.” “Inside, inside, the cars are going so fast,” in her Greenglish dialect, as she pushed us away from the cars with her arms. And the cars were going fast, as my sister and I walked along the road, our beach towels in hand. We often went with our aunt, Matina, who passed away in 2013, and sometimes with our cousins and mother. The house was sold before my grandfather died in 2000.

Last winter my husband took me to Outer Banks, North Carolina. He thought that I would love it so much that I would want to return again and again. I found myself disappointed in the chain restaurants and in the lack of small town charm in the town where we stayed in Kitty Hawk. As we walked along the small town of Greenport this July, adjacent to Southold, he understood what I had missed. No Starbucks. No Home Depot. These old North Fork towns are still quaint, in part because there is no space to build up a Route 1 or Post Road. We visited our dear friend, Vivian, walked to an old lighthouse built in the 1800s, had coffee in a family-owned café and walked along the rocky beach, gathering stones and shells to bring back to our son.

The sun was setting as we walked holding hands and I thought about last summer. I didn’t think that I would still be married in a year last August. My husband and I had very different responses to Mary Rose’s “diagnosis,” to my pregnancy, to the grief of our daughter’s death. I was in the middle of it, finding my footing in the thick molasses of grief. Everything I did took enormous effort. Anchored in the belief that Mary Rose is a blessing, that the experience is beneficial for my soul, that my daughter is with me still, I started to do things slowly, such as attending a MOPS meeting in early September not a month after Mary Rose was born and died. In October I had the courage to attend a birthday party with a Halloween theme. My eyes are sad in the pictures, but I was there and my son played with his friends. The holidays and winter were unbearable, my son’s third birthday, a low point and then I made it through the anniversary of the ultrasound in March. My heart still hurts, still stings, especially seeing photos of all the beautiful, healthy babies born since Mary Rose. Five of my cousins have new babies, the couple who introduced me to Tim have a newborn daughter, and their son, who is the same age as my son holds his living sister. I can’t help but think of the pictures that we have of our small son holding his still sister as we were about to prepare her body for burial. I bless all of these beautiful babies while I miss my daughter. My husband has a good and open heart, but he is able to compartmentalize and stay busy. He didn’t have her milk leaking out of his body after her funeral. Our bodies are different and so are our responses to grief.

So the weekend that we had away felt particularly important. I lived through what I hope was the hardest year of my life. I made it through my birthday and my marriage is intact. Perhaps it is stronger for the wear and tear of such emotional challenges. The innkeeper, Marilyn, prepared a gluten-free breakfast for me. We sat around an antique table in a house built in the 1800s with two other couples speaking of art. I was relaxed and the conversation flowed easily. When we left I was surprised that Mary Rose had not come up in conversation. No one asked me, “How many children do you have?”

We headed back to my parents’ house where our son was enjoying his grandparents and the day before we left for our home in Virginia, I took my husband for a ride to Cold Spring. I love the artistic town and the views of the Hudson River and West Point. We walked into an art gallery and met Maureen Winzig, whose painting “Manifest,” pictured above, caught my attention. In the caption next to the painting Ms. Winzig writes

Power is so subjective. There is power in being illusive, in mourning, in dreaming as much as there is power in fighting for justice. Women and men have their own unique kinds of power. In this series I have chosen to express my thoughts on ‘Finding Power: Women of Courage, Passion, and Character’ in ways that may be overlooked…Women take on the grief of mourning and cleansing the soul and then find the strength to pray for the world and manifest an energy that bursts out from within that most powerful feminine core…

In the painting the woman stands in her light, which is radiated in all directions. Her light is overtaking the darkness, but the darkness is still there in the background. Her posture is one of openness and expansion. Her chin is lifted up as if she is in a power pose. Her chest and shoulders are open. This is a determined woman who knows darkness and light. When I read Ms. Winzig’s words, I thought about the power of mourning. Are we that woman? Could our words and light be illuminating for others going through dark times?

This last year has not been about lessons for me. It has been about walking through inexplicable grief, experiencing the uncomfortable feelings and emotions that came up, many of them from other times in my life. Mary Rose brought up every fear and source of discomfort in my life. Therapy has been vital as we talked and analyzed and blessed so many challenges, the traumas of childhood and a bad first marriage, poverty and abuse in its many forms, and of course grief which has been a theme in my life. Am I more powerful for facing my mourning and allowing my vulnerability to show, creating a space to paint and draw and write about my path?

After Mary Rose died life continued on. A friend was diagnosed with cancer. The young godson of a Facebook friend died of leukemia. Many healthy babies were born, and still more friends are pregnant. My sister moved to another state with her family. Her friend who suffered many miscarriages birthed a healthy girl in her 40s. I wouldn’t know as much as I know if I closed my Facebook account, but I want to stay in touch with my friends and family. I want to bless the beautiful babies and their parents. And I’m glad that not one of their mothers or fathers has experienced a tragic pregnancy as I have.

It is almost August 8th, the one-year anniversary of my beloved daughter’s birth and death. I am writing a book to honor her life and to comfort others. I am whole even as I am aware of my brokenness. This coming Sunday we will offer a memorial service for my baby girl who was buried in her baptismal gown. I will bake a loaf of bread in the Syrian tradition and Father James will read the prayers that my people have read for their ancestors’ souls since the early days of Christianity, and actually before that in the Judaic tradition. My son is almost three and a half and he asks for his sister. But in this time of remembrance my friend is coming to visit, we plan a vacation to be with my sister and her family. The planet continues to turn and our feet are planted on our Earth, roots deepening with each experience.

I am broken and whole.

There is power in words, superheroes and in mourning. Who knew? The power comes from lassoing the intense grief and mourning, which comes from deep, deep love, to fuel our internal Light, even when it is just a spark in our heart center flickering and sputtering to reclaim its shimmering, brilliant light that unites us to Creator and each other. Soon I will travel to visit my nephew and I am packing some cool bracelets. We will walk in our power and make this planet a safer place for all, superhero style. Maybe he will lend me a cape this time.

 

Photograph of “Manifest” is used with permission. Maureen Winzig can be reached through her Facebook page:  https://www.facebook.com/WinzigArt.

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.

The Grief of Siblings

AngelFeathers1024x683My son says to me, “Mommy, I want to die. I want to go to heaven to see my sister, Mary Rose. I miss my sister.” My son was almost two and a half when he embraced and kissed his newborn sister. Fr. John took Mary Rose to the church when my son was asleep, that fateful Friday that she was born, and when my son woke up the next morning he asked me “Where is my sister? Where is Mary Rose?” We talk about the grief of mothers and fathers, but the siblings have difficult grief to bear without the understanding that adults have about death. If we have trouble processing the death of a loved one, what is it like for our little ones who are grappling with the reality of this big life lesson in their young lives?

I’ve only been to the cemetery once since Mary Rose’s funeral on August 9th. We did not bring our son to the funeral, though he was introduced to his sister and encouraged to be with her in the short time that we were together as a family on the earth plane. Before we went to the cemetery to see her stone in February, I explained to my son that we have a soul and a body. I told him an angel takes the soul up to heaven and that Mary Rose was given a new body with no owies, that heaven is a place where everyone is together with God, but it gets confusing because I also tell him that his sister is here with us, and that God is everywhere. When we went to the cemetery on a Sunday morning, my son was excited when he got out of the car. He looked around frowning at the stone markers and asked, “Where is my sister?” Apparently my discussion of laying the body to rest didn’t do much for my then three-year-old son.

I know that many people bring small gifts to their family members’ gravesites and go often, speaking to their loved ones there, feeling comforted. The cemetery is an important part of many people’s healing. Mary Potter Kenyon writes beautifully about her visits to her husband’s grave in her book Refined by Fire: A Journey of Grief and Grace. Her husband died unexpectedly. I wonder if it is different when people expect a loved one to die, as it seems to be with pumping mother’s milk. Perhaps for those of us who know that death is coming, the cemetery is not so critical in our walk through the grief because we start our grieving with the diagnosis. We brought crystal angels and stones to the cemetery and placed them on Mary Rose’s stone, but I left feeling bereft.

After Mary Rose’s death I started noticing feathers all over our yard. This has been my way, to pay attention to nature and to look for gifts and signs. I gathered those feathers believing that Mary Rose gave them to me. They now hang above my desk surrounding an angel sculpture. It is important to follow our individual grief. If grief leads you to the cemetery, then go and be there. If grief leads you somewhere else then that is okay too. Whatever feels right is the path to process the pain and grief of our loved ones’ deaths. We can choose to suppress our sorrow but it stays in our bodies and hearts until it can’t be contained any more. Instead we can sit with grief, breathing into the center of our cracked hearts to begin our healing process. I have chosen to spend this last year grieving my daughter’s death knowing that this is the healthiest path for me and my family. It hurts. I want to run away, but I breathe and stay in my life, because despite my daughter’s death, I love my life.

“How can I go to heaven?” my son asks again. “Can I take a plane? Can I take a train?” I remind him of the angel that is our transportation to heaven and he stares at me trying to figure this out. “I don’t want to stay on earth any more,” he says, “I want to be with my sister.”

There are several children’s books on death and I have read a few, though I hesitate to show them to my son. Many of these books talk about saying goodbye. They focus on the finality of death. For those of us who don’t believe that the relationship with our loved one ends after death, how can we explain the transition of the soul from one life to the next? I continue to love my aunt, Matina; my grandmother, Despina; my daughter, Mary Rose. I feel them. They come to me in my dreams. I hear them whispering through the breeze. There is no end to my relationship with them, and our love continues to grow. I know that for those who don’t believe in the afterlife this might seem strange, but I never thought that this was it. Each life touches one person and then another and another and continues after death through us and through the expansive life of the soul which never ends.

I recently enrolled my son in a grief program called The Healing Chickadee offered by founder, Terry Murphy, through wordbirddelivers.com. (See Resources.) Ms. Murphy’s brother died when she was a little girl and she did not have the language or tools to explore her grief and process her great sadness. My son will receive a bird each month for a year with a story that deals with grief. We received DeeDee first, the chickadee whose grandmother died. She comes with a cardboard bird house to paint and decorate. We love DeeDee. After we received her my son asked “Mommy are you too old? Are you old enough to die?” I tell him that most people die when they are old and I remind him how old his great-grandmother is. I tell him that only God knows when people will die. I am honest because I want him to know the truth that life is messy and chaotic and that tragedy strikes each and every family. We might want to avoid sadness and death but they both creep into our lives eventually.

For the siblings who have their own trauma it is important to talk about the emotions that come up when the children are ready to discuss them. My son seems very shaken when he sees newborns. After a pediatrician’s visit where he saw a newborn in the waiting room my son says “Our Mary Rose didn’t move. Our Mary Rose didn’t cry.” The first time he saw a newborn move her tiny arms, he was startled. His sister could not move from her weak muscles, and then she was still, wrapped in a pink blanket that said Mary Rose.

Sometimes my son says “Mommy I want a baby in our house. Two babies.” Other times it is, “Mommy all your babies will die. If God gives us another baby it will die too.” This is what my son knows. He knows that life is fragile and that babies sometimes die. I imagine that if we have another pregnancy that this will bring up trauma and memories of me weeping for months, stuck in back pain, not wanting to move forward or face what labor would bring. I also know that I will hold his hand and snuggle and tell him that God is in charge, and that every life does what it is supposed to do. For a minute or an hour or several decades, each life has a purpose. Each life will pass from this body and continue on its journey that takes her both far away and very near to our hearts.

In the Orthodox Christian liturgy we pray for the living and the dead at each service. Somewhere in the hymns and prayers and Chalice we find that we are all connected and united in Christ. Christ means Light. If we make the choice, we too can embody Light. The holy doors to the altar of the temple or church stand between heaven and earth in the iconography depicted. On the one side we see Mary, the Theotokos, God-bearer, holding her son, and on the other side, Christ, the Pantocrator, who will come again according to our traditions and scriptures. If we are honest we live between heaven and earth, between the ancestors and the future generations. The Native Americans believe that a laboring woman stands between death and life as the veils thin to allow each soul to enter from one world into this one. I too am a door between heaven and earth. I walk holding my sweet son’s hand, and feel Mary Rose reaching out to us.

This life is a threshold and a portal into the deep waters of our souls. When people ask me if Gabriel is my only child, he too looks startled. I want to scream “Of course not,” as my body is clearly still loose from carrying and birthing my daughter. My sister offered that it would be easier to say yes, and not discuss Mary Rose with strangers or acquaintances, but to deny her existence is to deny part of my path. Sometimes I wonder if our family will always grieve Mary Rose. I know that there are moments of such sharp pain of missing her, that I will miss her my entire life. I am grateful for the opportunity to nurture her in my body and to be the opening into which she could come. Birth work is sacred work. Our grief is also sacred, especially the innocent grieving of our young children. Their eyes are open to realms that many do not experience until they are adults, and we, their parents, can honor their path as they love and miss their siblings, as we walk together, holding hands, taking another step forward on this meandering road.

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 .

Why Do People Compare Grief?

IMG_0550I pull into my friend’s driveway at the end of the road and feel like I am visiting a magical place. I am thinking of fairies and woodland creatures as I get out of the car taking in the shady property surrounded by pine trees and gardens with echinacea. I read about this house in Terry Jones-Brady’s book A Mosaic Heart: Reshaping the Shards of a Shattered Life. Terry writes about her two daughters’ deaths from cystic fibrosis and her first husband’s suicide five years later. She is outside waiting and asks me “How long has it been?” I pause surprised that it is June 8th, surprised that it is ten months since I held my baby girl in my arms.

Terry and I have been talking about how people compare grief. The first time I met Terry in the fall I muttered something about how my grief can’t be compared to hers. She looked me in the eyes, holding her blue mug of tea and said “Grief is grief. You can’t compare.” Right then in the wake of my new journey as a grieving mother, I saw my own conditioning. As a young child I was compared to other children and to my sister. We are taught to measure our achievements by looking at how others have done. We compare our paychecks, houses, cars, looks, health and relationships to those of our relatives, coworkers and Facebook friends and we feel inadequate in these measurements. We never know what goes on in someone else’s house or heart when the lights go out, when we aren’t there. Here in the club of parents whose children have died, how does it serve us to compare our grief? Who wins if one of us has more pain?

I think back to the many grant proposals I wrote and how we developed assessment tools to measure success. But can we measure or quantify grief? People try to do so. My mother tells me that my grief over burying my newborn, Mary Rose, is not as bad as Judy and Steve’s grief because their first daughter, Hannah Audrey, died at 18 months of brain cancer. Judy and Steve’s pain is not as deep as Miko’s grief. Her son, Josh, was in his early twenties when he died suddenly in a car accident. Miscarried children aren’t weighed on this scale most of the time. When I ask my mother how she came up with her statements she says that when you have more memories you miss the child more. According to this scale the longer a child lives, the deeper the grief.

I disagree. I think of my daughter’s life and I try to extrapolate a new memory, a part of her, something from our journey. I had contractions for the duration of her life. She was buried in her baptismal gown that had pink roses on it. No baptism. No milestones. No smiles. It was one life-changing moment. Sometimes I only remember the feeling of her weight in my arms wrapped in a blanket, my thoughts “I can’t believe it’s already over,” and my son bending happily to give his beloved, still sister one more kiss. When I hear parents speak of their children who have reposed, they smile, often with tears in their eyes, remembering outings, moments, words, hugs, dreams and kisses. My heart longs to know something of my daughter’s personality and quirks. I feel her presence with me all the time, but my body and heart want more.

A couple of weeks ago Terry emailed a few friends about a negative Facebook experience. A friend told her that Terry should get over her daughters’ deaths because Terry’s grief was not “one-tenth” of hers. This woman who was sexually abused by her father and brother, and later stayed with an abusive husband, took to cyber-bullying a friend whose entire family had died. Another friend who is a priest told Terry that losing a parish entailed more grief than losing a child. When Terry asked “Why?” the response was “Because God is in the parish.” Terry asks me “Isn’t God in a mother who bears her child?”

People tell me often that I shouldn’t cry because I have a living son. I am reminded again and again that some people’s first pregnancies end in death. Though I know that my son is a blessing, grief doesn’t work that way. I carried and buried a child. I have a right to stay in the space of grief, to work through it, to feel the pain of not having my daughter here in the flesh for the rest of my life. She surrounds me. She is in my heart. I love her, but it still hurts. I don’t know that this would hurt less if I had a half dozen children.

Even here discussing Mary Rose, and Terry’s beautiful daughters, Heather and Holly, let’s not compare. Mother Gavrilia, the Greek Orthodox nun, writes that comparison is violence. If we are all created in God’s image, than how is one of us better than another? How does one person’s grief hurt less? If we believe in soul contracts, fate, karma and God’s will, then the tragedies of our lives shape us and prepare us for furthering our work on the planet. I believe that I was chosen to be Mary Rose’s mother, that she chose me, that we chose each other. Terry’s path is different from mine, and so is her journey of grief.

I choose not to compare life to death. I want to think about life and Life. Not this side on Earth or that side of the veils, but of life and the deeper Life beyond this body in the multi-dimensionality and beauty of our Creator who sees the entire Universe in those loving eyes. I know that Mary Rose, Holly and Heather Live. They are now our ancestors, each child a beautiful and divine creation in her own right. How can we compare a newborn, a twelve-year old and a twenty-two year old daughter or how much their mothers miss them?

Terry made mosaics from the broken pieces of Christmas ornaments and dishes and glass after her children died. Some pieces broke on their own but she shattered others, arranging them to make beautiful art. The picture above, which is on the cover of Terry’s book, has several words. I see the words glad, tidings, heralds, Child’s, Earth, world, Joy, Peace. John Milton’s words But what is strength without a double share of wisdom appear unbroken, and the angel, whose left hand and wings are missing looks out at us, her chin held high.