Finding Support When You Need It

By Lindsey Rothschild, Reposted from her blog Lindsey's Guide

Living in a community is not only about the good times. What can be the most telling is the support your find during the toughest times. Having moved here to start a family, we were overjoyed when I became pregnant with twins in the summer of 2010 (after 2 years of trying unsuccessfully in NYC). We were nurtured through this process first by the excellent  midwives at Holyoke Midwifery Care and finally through science at Baystate Hospital. However, our excitement turned to despair when we learned at our 20 week ultrasound that both of our babies were afflicted with genetic abnormalities that were “incompatible with life”.

Somehow the Empty Arms Bereavement Support pamphlet found it’s way into my hands. I nervously called the number one evening expecting to leave a message. Instead, the loving voice of Carol McMurrich, Empty Arm’s founder, answered the phone, listened to my story, and immediately I knew that I wasn’t alone. That began my relationship with Empty Arms. The support groups and community that Empty Arms offered us was our lifeline through that devastating time. We carry the love and loss of our twin daughters with us as well as the loving and supportive community of Empty Arms.

The Location of Loss

By Ryan O'Neil

My name is Ryan, and my wife had a miscarriage in December 2014. Since that time, one of the many things we’ve struggled with is recognition of our loss.

Katie and I have found small ways to integrate our daughter C.C. into our lives—writing about her for example, and taking photos that make us think of her impact on us. But we struggle with how to share her with people beyond one another. We explore this at the monthly miscarriage support group sometimes: Where in this world can we make C.C. known?

Recently in a class I’m taking for my master’s degree in geographic information systems (GIS) in Public Health, I had to work on a final project: mapping a broad set of data. Unsure exactly what I was looking for, I browsed the Connecticut Department of Public Health website.

I found the birth, death, and marriage data—“vital statistics,” as they are often collectively referred. I dug in and found there were data for fetal deaths: data that covered 17 years and recorded at the town level, which would be ideal for this project. I thought about whether I wanted to spend a number of weeks soaking in this data, of all the statistics I could submerge myself in. Resolute, I decided to steer into the skid and maybe help shine a light on the subject, even if only for my professor and classmates.

The information about this data said “fetal death” was defined as pregnancy loss at any point up to 20 weeks. We had lost C.C. at about 9 weeks. I went to the 2014 table and scrolled down and found our town. There was a “1.” Our C.C.

It felt comforting, in a way, to see that “1,” that she counted. Even if most of our friends and family had forgotten our loss, the State of Connecticut would always have a “1” there to count her.

I worked on the project steadily over the course of about four weeks, going back again and again to analyze the data, and adding things I wanted to do with it. I finally wrote the introduction to the project. I re-checked some things, including the state’s definition for fetal death. But I had initially mis-read the definition; it was any pregnancy loss after 20 weeks.

At the time, I couldn’t sit with what that meant for long. I had a lot of work to do and not enough time. I sighed and was thankful that at least the only thing I had to change was a single sentence in my introduction, since I had only used the term fetal death (as opposed to “miscarriage”) throughout the paper.

Since that time, however, I have had time to think about this experience, and my residual sadness about it. I had lost the comfort of our loss being counted.

Yes, that “1” belonged to another family in our town—a family that I felt sorrow for. And I wondered who they were and if I’d ever come across them at any point. But, as little consolation as it is, I felt envious that their loss had counted, statistically speaking. The State of Connecticut was just one more entity that didn’t want to know about our loss.

We’re still looking for where else C.C. gets to live, outside our hearts.

Mother's Day

Beth made some small edits to this beautiful poem, "For Those Who Hurt On Mother's Day," to focus on baby and pregnancy loss. We hope it speaks to you. Thank you to John Pavlovitz for these compassionate words. 

Mother's Day.

For many people that means flowers and handmade cards and Sunday brunches and waves of laughter. It means celebration and gratitude and warm embraces and great rejoicing. It means resting fully in all that is good about loving and being loved.

But not for some people.

But for some it only means tears.

For some it just hurts.

In the hearts of many, this day is a bitter, unsolicited reminder of what was but no longer is, or a heavy holiday of mourning.

Maybe it is such a day for you.

It might bring with it the scalding sting of grief for the emptiness around a table.

It might be an annual injury you sustain.

Consider this a personal love letter to you who are struggling today; you whose Mother’s Day experience might be rather bittersweet— or perhaps only bitter.

This is consent to feel fully the contents of your own heart without censorship or guilt or alteration.

If you are hurting, then hurt.

May you feel permission to cry, to grieve, to be not alright.

May you relieve yourself of the burden of pretending everything is fine or faking stability or concealing the damage.

May you feel not a trace of guilt for any twinge of pain or anger that seizes you today, because it is your right to feel.

Above all though, may you find encouragement even in your profound anguish.

May you find in your very sadness, the proof that your heart though badly broken, still works.

Let the pain you are enduring reassure you that you still have the capacity to care deeply, despite how difficult it has been.

See your grief as the terrible tax on loving people well, and see your unquenched longing for something better as a reminder of the goodness within you that desires a soft place to land.

If on this Mother’s Day you are struggling, know that you are not alone.

Let them be hope packaged and personally delivered to the center of your heart, and may they sustain you.

In this time of great pain, know that you are seen and heard, and that you are more loved than you realize.

Be greatly encouraged today.

 

A Pastor and the loss of his child.

The following sermon was given during Lent of 2016 by The Rev. Nathaniel S. Anderson - Pastor of Church of the Epiphany-Christ the King in Wilbraham. Pastor Nathaniel and his wife Carolyn Starz are the proud parents of Inga, born February 2017 and James, stillborn at 34 weeks in November 2015.

As a part of your seminary training, Lutherans and Episcopalians (and pretty much every stripe of Christian) spend one summer as a hospital chaplain. Clinical Pastoral Education, or CPE as it is called, is a bit of baptism by fire - you’re thrown into patient rooms with nothing but a prayer book and a name tag. As the low chaplains on the totem pole, your first unit of CPE usually means being on call once a week during the overnight hours. You sleep in the hospital, usually with one eye open, as you wait for the pager to wake you from some very poor sleep. I spent roughly a dozen nights on call and I saw everything from sudden deaths and traumas to an urgent call from a nurse in the Emergency Department who was convinced a patient was possessed by the devil. Literally 5 minutes into my first ever night on call, I walked through the doors in my collar, and was immediately asked, “Father, would you please perform an exorcism?” My classmates still laugh about that one. Despite quickly becoming experienced at handling intense situations, I was still anxious just about every night I was on call. Each and every night I prayed the same prayer, “Please God, don’t let a baby die tonight. There’s no way I can handle that. I won’t know what to say.” I never expected that one day I would be standing over Carolyn’s bed after we lost our son James, facing a just-jostled-from-sleep chaplain intern confronting that very situation.

Everyone knows there are certain things you just don’t say when a baby dies. Especially as the chaplain. Silence is preferable to easy answers or saying ‘something.’ I’m pretty sure every chaplaincy department drills that into you on the first day. And yet early that morning, the chaplain that met us apparently didn’t get the memo.

“Well,” she said, “Though we can’t say how, we know that this is a part of God’s plan.”

Normally, when a chaplain utters such a simplistic and insensitive platitude, those on the receiving end rip them apart. And yet, seeing her discomfort, the deer in the headlights look in her eyes, her complete inability to do or say anything else, Carolyn and I could only feel sorry for her. This chaplain was completely overwhelmed and didn’t know what to do. And I’m almost certain if I had been in her shoes during my first year of seminary, I wouldn’t have done any better. Ideally, I would have just kept quiet. But I don’t know.

When I first came back from my leave of absence, I said that it would be a while before I could talk about what happened with James. And quite frankly, I’d rather not talk about something so raw and painful. But with this morning’s Epistle from 1 Corinthians, I feel compelled to address this. Because, unfortunately, these words from St. Paul are so often misunderstood and used to perpetuate incorrect and unfaithful interpretations of how we deal with tragedy. This reading brings to mind several unhelpful and grossly incorrect sentiments. These include:

“God is testing you.”
“You must have done something wrong and are being punished.”
“Everything happens for a reason.”
And, “God won’t give you anything you can’t handle.”

Most pastors have a very specific theological term to describe these type of sayings:

Bullshit.

“God is testing you”

First, I’d like to address the notion that God tests or punishes us. Jesus himself dismisses these claims out of hand in our Gospel reading. Jesus recounts a couple of recent tragedies - Jews that were killed by Pontius Pilate, as well a freak accident - the tower of Siloam falling and killing eighteen innocent people. The common thinking at the time was that such events were not accidents or simply the actions of an evil man, but rather were retribution for some affront against God. Jesus asks the crowd, “Do you think that they were worse offenders than [anyone else]?” Jesus decisively answers his own question, “No, I tell you.” Jesus is clear - such tragedies are not punishment for sin, but rather death is an inevitable reality of our existence. In addition, we need only look at Jesus’ temptation in the wilderness, our reading from two weeks ago and a central theme to our Lenten observance, to address this notion that “God is testing you.” Jesus is brought into the wilderness and tempted, not by God, but by Satan. And when the Devil encourages Jesus to test God, Jesus replies decisively that we are not to put God to the test. While events and issues in our lives may test our faith, that is in no way the same as God himself doing the testing.

“God won’t give you anything you can’t handle”

Next, and somewhat related, the middle part of 1 Corinthians 10:13 may bring to mind this trite expression. Paul writes, “And he will not let you be tested beyond your strength.” It’s important to note that this tangental section of 1st Corinthians comes about when Paul is discussing one of the many controversies in the church at Corinth. Specifically, is it ok to eat meat that was previously sacrificed to idols. Paul is describing the temptation to eat food that is not kosher. This is far from a struggle with crushing adversity. It also must be said that Paul had nothing close to our modern understanding of mental health — no one was overdosing.  And when you consider all that Paul did not experience — how privileged he was as a Roman citizen, how he wrote these words before enduring his most arduous trials, we must consider the obvious possibility that Paul was just wrong. Never let anyone tell you that “God won’t give you anything you can’t handle.” Because it isn’t God who causes us to suffer, and there are indeed situations, circumstances and illnesses that are far beyond what any one person can reasonably be expected to handle. If you feel overwhelmed and without hope, ask for help. Seek treatment. Look for support. This is not evidence of a weak faith but rather a courageous step toward healing and wholeness.

“Everything happens for a reason /
It’s all part of God’s plan”

And of course, this unhelpful sentiment uttered by that chaplain. Such a view implies that God wanted our son James to die. That God wants children to go hungry, and cancer to kill and addiction to ravage. All to fulfill some greater purpose. Brothers and sisters, I do not believe in that God. Instead, I believe in a God who takes all that is evil and wrong in our world and transforms it into something good. I believe in a God that took something as horrible as the death of Jesus on the cross and transformed it into the means of our salvation. I believe in a God who promises that the dead will be raised, that war will cease, that the hungry will be fed and the poor lifted up. The Easter promise is one of redemption — of God transforming our world and our lives. The work of our Lord Jesus, who, as our Episcopal Presiding Bishop Michael Curry says, “Will change the world from the nightmare it often is into the dream that God intends.”

Those who have been there

Finally, I would be remiss if I didn’t hold up the beginning part of verse 13. “No testing has overtaken you that is not common to everyone.” This has been one of the most striking realizations following James’ death. As horrible as the experience has been, we are not alone. I have found great support in the nearly dozen women within our very parish who have suffered a stillborn loss. And many others who have struggled with miscarriage. Beyond this specific type of loss, I’m amazed when I look around this church and see so many who have lost a spouse or a parent or a child. Amidst the fog of our grief, I wonder, “How do you keep going? How have you found that ‘new normal’ in your life?” I have heard from so many of you who know exactly what we’re going through, or who have experienced something equally as devastating, and heard that, “It gets better. It takes a long time, but it gets better.” And I find great hope in that. That though death and loss and suffering are an inescapable part of our human experience, that somehow, and by the grace of God, we move forward.

The chaplain who met with us in the hospital didn’t know what to say — and she didn’t need to say anything. Sometimes there is nothing you can or should say. The death of our son continues to be a struggle for us. When I preach words about the hope and promise of God, at times I believe them stronger than ever — and at other times I’m preaching to myself and need to hear these words as much as anyone of you in the pews. But in many ways, I’ve come to the realization of my ultimate and overwhelming dependence on the Gospel. How I really need to believe this stuff. Really need to place my hope in these promises. Before this, life was easy, I had never suffered any major setback, it was easy to be happy and carefree. I can no longer say that. Like so many of you I have suffered and cried out to God in despair. My faith has been tested. And yet I know that it is not God who tests me, but rather God who stands by me and supports me. God who hears my questions and my anger and my praise. God who promises that at the last day, our beloved James, and all of us, will know God’s ultimate redemption. Amen.

Our Stories: Our son, Cameron Brooks LaValley

Empty Arms is highlighting our beautiful community members and their babies. We're so grateful that they're sharing their stories with us! 

Tell us about you.
I am a 46-year-old father of three, with one more on the way. My wife and I lost our son Cameron at 38 weeks in between our second and third living children. I have been a police officer for 18 years.

Tell us about your baby or babies. What do you want people to know about them? 
Cameron Brooks LaValley was stillborn on July 5, 2013.

How did your baby and your grief journey change you as a person?
It made me realize what me and my wife could get through together. It made me understand how incredibly strong my wife is. I never needed reasons to appreciate and love my family every day...our experience just reenforced everything I had been doing. A year after our loss, I had several experiences involving anxiety attacks. It led me to a place where I discovered many things about myself, good and bad, but things that have made me a better person, husband and father. It made me slow down and live in the moment more than I ever had.

What was the most important way Empty Arms offered you support? 
It gave me a connection with others who have experienced loss. It supported and did not judge the ways in which we chose to incorporate the loss into our lives. It helped us feel less lonely and gave us a resource that allows us to grieve and celebrate in many different ways.

Our Stories: Our daughter, Emma Elizabeth Dias

Empty Arms is highlighting our beautiful community members and their babies. We're so grateful that they're sharing their stories with us! 

emma dias 2.jpg

Tell us about you.
My name is Kate Dias. I am a registered nurse, born and raised in the Pioneer Valley.  My husband (Jon) is a teacher, also born and raised in the Pioneer Valley.  We are the parents of two daughters, one who is with us and one who is not. Our missing baby remains in our hearts and is very much a part of our day-to-day living.

Tell us about your baby or babies. What do you want people to know about them?
Our first daughter, Emma Elizabeth, was 6 lbs 4 ounces, 20 inches long. She had a perfect little nose, flawless skin, big hands and feet, and a little crooked toe on each of her feet. She barely had any hair, just a little bit of peach fuzz that was kind of reddish in color. She was due December 17, 2014 and had been a very active baby in utero. I used to joke that the first thing I would do was grab her feet to get a good look at the weapons she used to kick my ribs.  I went into labor December 7, labored for 28 hours, and in the morning of December 8 things inexplicably and unexpectedly changed. Emma had been handling labor “perfectly,” but then she didn’t. I was rushed to the OR for an emergent c-section but Emma died before she could be delivered. We were able to hold Emma and have her body with us for 38 hours after she was born. That was instrumental in our grief journey.  Those are the moments I cherish the most with her.  I was able to spend time dressing her, holding and kissing her, talking to her, and just feeling her close to me and in my arms.  I didn’t realize it at the time, but that was so incredibly important and really shaped the memories of and connection I have with her today.  Emma’s grandparents, uncles, aunt, and extended family members were able to come see her, hold her, and show her how much she was and is loved. We had Emma cremated and have her ashes in a beautiful glass urn. We were able to receive hand and foot castings, ink handprints and footprints, and professional photographs of our baby. We display our Emma mementos and her urn in an area of our house dedicated just to her. We also have some really beautiful photos of Emma sprinkled in rooms throughout our house. She is very much a part of our daily lives and is mentioned daily in some way or another. Emma has shown us what truly matters in life.

Our second daughter, Grace, was born April 2016, 17 months after Emma was born. Grace came sooner than expected, but much to my relief she was born alive and healthy. She was 6 lbs 8 ounces and 19 inches long. We chose the name because we felt like she was a gift of grace during our grief. Unlike her older sister, Grace had a head full of wild hair.  She looked a lot like her older sister, even having the crooked toe on each foot. We had some feeding issues immediately after birth, and Grace developed jaundice and required light treatment for it, but everything eventually got back on track.  I remember asking why things had to be so challenging after her birth. Hadn’t we already paid our dues? I felt like we deserved an easy road after what we had already experienced with Emma.  It was frustrating.  Also, I wasn’t ready for the comments people made assuming Grace must make Emma’s death a little easier to deal with.  That angered me the most.  Grace is our second child--a continuation of our family.  What I wish the most for people to understand is that although she followed Emma, Grace is not a replacement for the baby we lost.

How did your baby and your grief journey change you as a person?
Emma’s arrival and her death have changed my perspective on life. Certain things that once bothered me now seem insignificant. Material possessions now have no meaning.  I also feel like I have little to no sympathy for people who choose to create and focus on drama that they willingly create for themselves.  Conversely, what I have found is deep empathy for those who are experiencing terrible things that they have absolutely no control over.

Another way I am changed is in my ability to give any of myself to other people.  My job requires an ability to provide compassionate care and support to patients and their families.  It requires a lot of energy and a certain amount of emotional reserve to tap into when need be.  It was particularly difficult for me to provide emotional support to anyone (family, friends, or patients) in the first year after Emma died. It was hard to give to others when my own emotional reserve was depleted. It has changed somewhat over time, but I find it sometimes is still hard.

Is there a way that you can pinpoint a change in your healing and grief journey because of your relationship with Empty Arms?
I know that I felt like I had been dropped into this deep, black abyss the day Emma died. Everything that I thought was my life now looked completely different. I remember being in my hospital bed thinking, ”I am supposed to live after this?”  Any thoughts of healing or putting a shattered life back together seemed insurmountable and impossible. Our first contact with Empty Arms was through their companion program, when Carol came to our hospital room the evening of the day Emma died.  She introduced herself, sat down next to us, shared her story, and shared with us the ways Empty Arms can help. I don’t remember what exactly she said, but I remember how it made me feel, which was less alone and hopeful that I could maybe, someday, be in a place where I, too, would be a survivor. It meant so much for someone to come into our room, look at our baby, and see past the fact that she was dead.  Carol commented on her little face, and how beautiful she looked. She validated our baby’s existence. I could see that I  was facing was painful and hard road, but there was someone who could hold onto the hope that I would eventually be living a meaningful, functional life again, even though I felt like it could not  possibly exist.  

The Empty Arms support groups have been instrumental in my healing as well.  It is healing having a space where I can talk about my daughter, not be judged, and say the things about baby loss that my non-baby loss friends could never relate to.  Coming into a group and sharing my feelings and experiences, then having other people in the group share that they have had similar feelings or experiences has helped normalize a lot of the ways grief affects me.  

Another way Empty Arms helped was during my subsequent pregnancy with Grace.  I was terrified throughout the entire pregnancy. I was constantly waiting for the other shoe to drop, so to speak.  It felt like death or tragedy was right around the corner.  I had no pregnancy milestone to pass where I could take a deep breath and think, “We’ve made it farther than we did with Emma.”  The only time this pregnancy would be different is if Grace was born alive.  I participated in the Subsequent Choices support group with several other loss parents. Having that space to voice my grief for my dead baby and the tempered excitement over our new baby was instrumental in helping me make it through the pregnancy.  Many non-bereaved people I knew couldn’t understand why I was worried or so anxious about this pregnancy. Someone actually told me, “I have never heard of this [meaning stillbirth] happening twice.”  Yes, it does happen, and yes, I was worried about it.  Many of the other people in the group worried about it, too. We all had common fears and feelings regarding our subsequent pregnancies. It was helpful to have that support.

emma dias 1.jpg

In what way do you think your connection with Empty Arms and its members has reached outwards to impact other people in your network?
One of the ways Empty Arms has allowed us to reach outwards and affect others is by allowing us to have a fund in our daughter’s name that is designated for a specific use.  In lieu of funeral flowers, we asked that donations be made to Empty Arms. We didn’t have a specific plan for the funds at that time, other than we wanted to give back to an organization that had been helping us from day one.  A few months after Emma’s funeral, Carol talked with us to see what we would like to have the donation money put toward.  Her thoughtfulness and willingness to incorporate us into the decision making was a huge gift to us.  My husband and I decided to create the Emma Dias Fund (or Emma’s Fund) to serve two purposes.  The first is that we really want to help cover costs of the photography printing and delivery for families.  Our personal experience with this was hard. We had a few hoops to jump through when we tried to get photographs printed for Emma’s funeral. In between crying and lying in bed waiting for the days to pass, it was very difficult to make phone calls or try to get things sorted without outside help. My husband and I decided we wanted to make it easier for families to have that type of service available (if a family feels like it would be helpful to them).

Our second purpose for the fund is to help educate nurses on compassionate caregiving regarding perinatal loss. Nursing education is something near and dear to my heart, and I felt like providing this education to future nurses would be valuable to both the nurses and their future patients. The hope is that all local nursing schools will make space for this lecturing. Right now there are several schools who are utilizing this service. In addition to nurses, Emma’s Fund recently helped support education to OB-GYN residents at an area teaching hospital.   

We were able to create Emma’s legacy, which we hope will help our community and those who are thrust into the club no one wants to be a part of.

What else would you like to see Empty Arms accomplish? How do you envision the organization could make that happen?
It saddens me to know that there are some area hospitals, OB GYN practices, and other medical facilities that do not utilize the services provided by Empty Arms. Whatever the reason, it is important that these services be available for bereaved families. It was really so important to my healing that someone came to me, in my hospital room, on their own time, to offer their help and guidance on the worst day of my life. The support continued through the following weeks, months, and now years.  To not be aware of this organization and its resources is a real disservice to our entire community.    

Our Stories: Estephany & Aaron's Babies

Empty Arms is highlighting our beautiful community members and their babies. We're so grateful that they're sharing their stories with us! 

 Estephany and Aaron

Estephany and Aaron

 Estephany and Aaron have a special place in their Living Room to honor their babies.

Estephany and Aaron have a special place in their Living Room to honor their babies.

Tell us about you.
My name is Estephany, and I'm 23 years old. My boyfriend is Aaron.

Tell us about your baby or babies. What do you want people to know about them?
We lost two pregnancies in the same year; although they weren't born yet, to us they meant the world.

How did your baby and your grief journey change you as a person?
After each loss, I felt like I lost a different part of myself. I became lost and didn't know how to deal with every day life anymore.

Is there a way that you can pinpoint a change in your healing and grief journey because of your relationship with Empty Arms? 
I felt alone and like there wasn't any one out there who understood what I felt. Being a part of Empty Arms has helped me accept and learn to do better out in the real world.

What was the most important way Empty Arms offered you support?
Being caring and listening.

What else would you like to see Empty Arms accomplish? How do you envision the organization could make that happen?
Keep being yourself and keep doing what your doing. You guys are amazing.

Reminders.

For our families, the world is filled with reminders that they are not parenting. Sometimes that reminder is a pregnant woman passing on the street, or a child at a grocery store. Other times, the reminders are at home, making daily life complicated, exhausting and somber.

One day, father of C.C. and our community member, Ryan, felt compelled to document the changes in his home that were not. The electrical outlet uncovered. The stairs without a gate. The pantry without baby food. The car without a car seat. The cabinet door without a safety latch. A night stand without a baby monitor. Each of these serve a marker of loss.

Empty Arms offers a safe space for our families - free from reminders and full of support. Wherever you are in your healing journey, we welcome you. Thank you for sharing these with us, Ryan.

C.C.

  Ryan and Katie during their pregnancy

Ryan and Katie during their pregnancy

By Katie and Ryan

Early pregnancy loss can be an especially isolating experience. Society tells us not to share that we’re pregnant until the end of the first trimester, as if it is some magical threshold after which nothing bad can happen. (For the record, Empty Arms is full of grieving parents who can tell you that’s not the case.) But for those of us who have had something bad happen during the first trimester, it becomes that much harder to share the news of our loss, often leaving us to mourn in silence.

When we said goodbye to “our little Chocolate Chip” nine weeks into our pregnancy, two days before Christmas 2014, we were devastated. We weren’t ready to leave the house, let alone celebrate anything, but we also weren’t ready for all the questions that would invariably come our way if we just cancelled. We didn’t want to ruin everyone else’s holidays either, so we told only our siblings (to help us deflect attention when conversations turned in our direction) and slogged through all the scheduled celebrations. Neither of us remembers much of those celebrations. Still in shock and unable to fully grasp the reality of our loss, it felt like we were sleepwalking.

A month later, we attended our first local (Connecticut) support group meeting for people who had lost a child. This group was full of compassionate, supportive people who had also suffered loss, but at times it was painful to listen to others talk about how something like a picture of their child, a memory of their son, or one of their daughter’s possessions would trigger them. It hurt because we didn’t have any of these things. We didn’t have any objects to hold onto, no pictures of our child.

After hearing all of their gut-wrenching stories, we felt overwhelmed. Even as we witnessed their grief, we felt envious of the time they’d had with their children. We felt inadequate to explain the depth of our own loss. We felt resentful that we felt we had to explain that our loss was just as real.

After a couple meetings we decided to look for a support group with a more specific focus. Even though we live an hour’s drive from Northampton, we made the trip to our first Empty Arms meeting in March. The Miscarriage Support Group was exactly what we needed. These were people who fully understood that our loss can seem invisible to the outside world. Our loss was full of hypothetical moments — watching her grow, celebrating birthdays, helping her learn her ABCs, taking her for rides in a running stroller, making Halloween costumes, driving lessons, prom, college graduation, her wedding day — a whole life with our child. We were mourning the loss of our very real child. We were mourning the future we pictured with her.

For the first time since our loss, we left that evening with our hearts feeling a little lighter. We felt heard. We had found people who truly understood our loss and could help us on our grief journey. We no longer felt alone. We’ve been back every month since.

The Empty Arms community understands that grief is an ever-changing journey that doesn’t always look like sadness. There are plenty of tears, and anger, and depression, but there are also times of lightness, with smiles and laughter. There is time to hold our children in our hearts.

They hear and understand where we are in our grief journey because they’re right there with us now, or they’ve been there at some point during their own experiences. They don’t judge us. They don’t try to fix us, or minimize our pain. They don’t say things like “You can just try again,” “Everything happens for a reason,” or “It’s probably for the best.” And we can be there for other bereaved parents as they share their experiences.

Although we don’t live in the area, we very much feel a part of this community and are glad to have found them.

Zady

                                     

 waiting at the operating room door

waiting at the operating room door

When they wheeled Yahayra out of the operating room, her tiny, 4 pound, 10 ounce baby lay on her chest, bleating like a newborn lamb. Her friends and family-- numbering close to 20-- were gathered around the door of the surgical suite, and when baby Zady let out her first audible cry, the adults all gasped in unison and broke into enormous smiles. Laughter and coos began to echo down the hallway as mother and baby were wheeled down to a postpartum room, and excited chatter began to replace the hushed silence that preceded those operating room doors opening. What would follow was truly magical. 

I first met Yahayra nearly a month before Zady’s birth. At that time, she was seven months pregnant with a baby girl she knew would not survive. It was the first time I’d ever met a mother during her pregnancy with a baby who would certainly pass away. When Yahayra had gone for her 20 week anatomy scan, the ultrasound had shown that her baby girl suffered from anencephaly, a rare neural tube defect where a major portion of the brain fails to grow. Babies with anencephaly sometimes live for a short time, but they also frequently pass away in utero or die during the delivery. Mothers in this situation are always given the option to medically interrupt the pregnancy, either through early induction, or a medical termination through a surgical procedure. Because babies with this diagnosis can not survive, this option is often encouraged by health care providers. However, Yahayra felt compelled to spend as much time as she possibly could with her daughter.  So onward she marched, her belly expanding-- patiently explaining to her two older children and numerous family members about Zady’s unique condition.                      

Over the weeks as I met with Yahayra we spoke of her fierce love for Zady, and we laughed together as we watched little Zady’s feet poke Yahayra’s expanding belly. We shared the hope that Zady would be born alive and we would all get to spend some time with her before she died. During our visits we also made plans for how we would capture as much of Zady’s life as we could. Right away, we made plans for a belly cast (thanks to Karen Kurtigan) and prenatal photographs (Thank you, Erin Long). We brought Yahayra roses, her favorite flower, and helped her to create a birth plan that felt just right for her. Yahayra knew that when Zady was born, her goal was for a peaceful time together. Sadly, there was no way to save Zady’s life-- her brain was not formed enough to sustain her for the long term. It was Yahayra’s goal to hold her daughter and be with her while she died peacefully. A sad, dreadful, and awfully brave goal.                                     

Yahayra was scheduled to be induced on Monday, April 4, at 36 weeks gestation. I can hardly imagine what it was like for her to anticipate that date. Her body was essentially keeping Zady alive and stable-- delivering to her all the nutrients and oxygen she needed. There was no telling what would happen to Zady when she was born, if she even survived the birth. For Yahayra, to deliver her baby was to hasten her death-- an impossible predicament. Yet she also knew that for Zady’s birth to be induced while she was still alive increased the probability that she would be able to spend time alive in her mother’s arms. So onward Yahayra marched, hands clasped around her ever-growing belly, facing an impossible future yet head held high. 

 Yahayra smiling through labor

Yahayra smiling through labor

Yahayra’s water broke early in the morning of Sunday, April 3. It was as if her body knew it was time-- she had been in countdown mode for so long, and she was ready to go. She came to the birth center and was greeted by a warm, supportive staff who had been anticipating and preparing for Zady’s birth for weeks. They settled her into the largest birthing suite, right at the end of the hall, and began to wait. 

The people streamed in. By the time I arrived at 1 pm, the room was full. Husbands, wives, uncles, aunts, cousins, grandparents, and friends surrounded the laboring Yahayra and Gilbert, Zady’s father. A baby slept in the corner. A few small children darted in and out of the room. I entered with photographer Erin Long, who had also developed a strong friendship with Yahayra during her pregnancy. The two of us came in and were instantly wary of the apparent chaos in the room. There was Yahayra, in hard labor with a baby who would not live, and we worried that all of these visitors might just be too overwhelming. In hindsight, I cringe with embarrassment at this thought: this opinion was me looking at the situation through my own eyes. Later, I would learn that all these people were a gift. Erin and I gave Yahayra hugs and Erin took some labor photographs, and Yahayra welcomed us to join the crowd, to stay and join the wait for Zady’s arrival. We settled in and waited.

 A family photo taken during labor

A family photo taken during labor

While the labor had begun on its own, for a variety of reasons in the early evening the midwives determine that the best course of action was to deliver Zady by c-section. I breathed a sigh of relief myself. Watching this woman labor with enormous physical pain and knowing the emotional pain that would follow was exhausting. I wanted her pain to stop, I wanted her daughter to be delivered safely and alive into her arms, and I wanted her anxiety about whether or not Zady would survive the birth to be answered. Erin and I stepped out of the room as Yahayra was prepped for her surgery. Her family was given another hospital room to use as a waiting area. 

In our own little room, Erin and I talked candidly to each other about how important we thought it would be that Yahayra and Gilbert would have some time alone with Zady in the surgical suite. We felt that given the volume of guests at the birth, and given the emotional intensity of meeting Zady, the quiet moment of birth for just the two of them might be preferable. Erin trustingly passed off her professional camera to an assisting midwife to photograph in the surgical suite, and then we sat back and waited. 

Not too long after, the midwife re-entered. She held the camera in her hand, her expression grave. Zady had been born, and she was alive. She had a heartbeat and was blowing some bubbles, she said. She didn’t think she’d last very long. Erin pushed the camera back at her. “Please, then. Go back and take some more photos of her while she’s alive”. The midwife left the room.

When she returned, the news was better: Zady was pinking up, she was making noise. Yahayra was stitched up and they would be moving her back to her room in a few minutes. We were invited to the hallway to greet her. The family gathered around. The doors opened. 

This brings us back to the beginning of our story, where Zady and Yahayra emerged from the surgical suite. Yahayra was beaming. The family all leaned in, craning their necks to catch a glimpse of the tiny, swaddled Zady. The two were wheeled down the hall and the family followed. The doors to the postpartum room opened and everyone streamed in and surrounded the bed. Yahayra lay there, her long, red hair surrounding her on the pillow, her icy blue eyes sparkling. She smiled down at her darling little girl, a petite, dark haired beauty wrapped in a blanket. Zady opened her mouth and let out a tiny cry, like a kitten. Everyone gasped, and laughed, and cried. It was the most adorable noise any of us had ever heard. Yahayra leaned down and kissed Zady’s little face. The family gathered quietly and respectfully around the bed, their faces glowing with pride and love. Everyone was taking photographs and doing the things you’d expect people to be doing-- whispering about how adorable the baby was, cooing when she made her sweet noises, and reaching out and touching her soft newborn skin. Yahayra raised her face to her family and said, “I know you all want to hold her, but right now the most important thing for her is to be with me”. No truer words were spoken.                     

I have rarely witnessed such beauty as that time around Yahayra and Zady, when dozens of people gathered around this baby whose life was limited and witnessed her beauty and her reality so honestly and openly. Suddenly, all these people-- who I had somehow, for some unexplainable reason, feared-- were a gift. They were all there as part of Zady’s family, as part of Yahayra’s community. They were gathered together in recognition of Zady’s life and to honor her parents during the short time they would actively parent her. What followed was an experience so authentic, so real, it made me think that as an Empty Arms companion I ought to have planned it thinking ahead to what would happen. Zady was absolutely confirmed and welcomed into a circle of love. Yahayra was confirmed and validated as a mother of three, Zady was confirmed as a sister, and her siblings were able to meet and interact with her immediately. In fact, they were able to help to dress Zady, diaper her, and interact with her just as siblings would.           

 Yahayra with her children 

Yahayra with her children 

Cousins and aunts, uncles and brothers, and the pastor from Yahayra’s church gathered around, hearing Zady’s voice, telling her parents how beautiful she was, and filling the room with joy. There was not a hint of grief, anticipatory or otherwise, in the room during that time. Zady was perfect and beautiful in everyone’s eyes. They loved her for who she was, as she was.                        

Everyone gave their time, their presence, and their love to Yahayra, Gilbert, and Zady, and then slowly, one by one, they kissed Zady’s tiny face and said goodbye, just after midnight. Nobody knew how long she would live for. They all hoped for more time.              

Yahayra and Gilbert had three more hours with their darling girl, just the three of them. They changed her clothes, they held her some more, they slept some together. At just past three, Yahayra’s dearest pre-natal nurse, Megan, the only one who hadn’t yet met Zady, came on shift. She came into the room to give Yahayra her pain medication, and Yahayra woke up and excitedly shared her beautiful newborn girl with Megan. It seemed a miracle that Zady was actually there, that she had been able to experience everything that her mother had waited so long for her to experience. She had been held, loved, and cherished. She had been met by family, shared, and blessed. Everyone who had waited for her, who had hoped she would live to meet them, had gotten their chance. 

And then, just like that, quietly and peacefully, Zady passed on. In her mother’s arms, right there, warmly and softly. I was not present for this moment, but I have an image in my mind of her little soul rising from her body, contentedly rising to another place, having fulfilled her time here on earth. Yes, her time was much too short. Yes, her parents desperately wanted more time. But the experience she had was beyond value, and the sweet, love-filled memories that her family will carry of her will last forever. 

I have companioned with many families over the years, but I have never had the opportunity to build a relationship with a mother the way I did with Yahayra, as our friendship grew in anticipation of Zady’s birth and death. Being part of her birth experience, and being able to witness Zady’s life and her time with her family was a privilege beyond words. I feel so blessed having been able to know Zady, and to be part of her short life. I feel so grateful for having been able to feel her warm cheek beneath my palm, for having been able to laugh along with her family when she let out her beautiful cries, and to be able to shed authentic, love-filled tears after her death. Little Zady, whose full name is Zadhayra, taught me so much. I will always remember her. Her life was short,  but her mother and her taught me so much about patience, and bravery, and love. 

Pieces of Healing: The Birth/Death of Kaia

Pieces of Healing: The Birth/Death of Kaia
By Anne Ellinger


Waiting

Is today your birthday, Kai or Kaia? Tomorrow? I'm scared of what labor might be like, yet I want it NOW! I've been holding my breath since two weeks before my due date, and now it's nearly two weeks after. All night part of me is tense, waiting, expecting. Now? Now? I awaken at midnight, 1:00, 3:30, 4:00, full moonlight pouring onto the bed. I stumble to the bathroom. Maybe standing up will break my waters? Nothing. Full moon, are you talking to my womb, whispering to this child, tugging sweetly on the waters? "Come out...come out...

From the outside, these last few weeks look like a wonderful break from my busy life. But on the inside, deep in my cells, my bones, my hormones, deep in mother history, I am a raging mother bear: "I WANT MY CHILD!"  Every second screams out. Come on! Come on! Come on! Come on! Come on! Now? Now? Now? This impatience feels deeply biological.

Even though people have been gentle and sympathetic towards me, I feel very alone.

Death and Birth

This morning, I can't stop crying. Not the angry frustrated crying of the past few weeks, but a deeper despair, sobs that come and come without thoughts. I call the midwife in desperation. "Isn't there something we can do? Tomorrow I'm supposed to come in for a stress test -- can't we do it today?" Molly reassures me that the baby did wonderfully on the non-stress test a few days ago. Has the baby been moving this morning? No, but that's not unusual for the morning. She suggests I drink some juice and lie on my side for a while to feel for movements.

Two hours and three glasses of juice later, I still haven't felt the baby move.  I'm not that concerned, because lately he or she has been quiet until evening and then kicking up a storm. But usually when I push firmly on an arm or a leg the little limb will shift out of the way, and today that's not happening. Molly suggests I come in, just to be sure. My partner Christopher and I set off on the 40 minute drive.

Molly greets us at the hospital. She finds a spare room with a doptone, the hand-held ultrasound that will let us hear the baby's heartbeat. I lie down on the table as I have done dozens of times before, ready to hear the familiar fast "whhhish, whhhish."

Molly keeps searching my belly with the doptone.

The silence is deafening.
I feel in a dream, my heart icy.
Molly finds a nurse to check again.
Christopher holds my hand.
"I don't believe it. I don't believe it," is all I say.
Christopher is crying.
I've cried so much in the last few weeks.
There are no tears left.
I feel dead.

We walk to an elevator, Christopher holding one of my hands and the nurse holding the other. Another room, another ultrasound machine, this time with visuals, a doctor looks, he says "I'm sorry, your baby is dead, There's the chest cavity, you can see -- no heartbeat."

I'm dazed, leaden. We're brought to a delivery room. The nurse explains what will happen: she'll insert a prostoglandin gel tonight to soften my cervix, and around 7am tomorrow they'll start me on intravenous pitocin to induce labor. No, they won't do a cesarean unless absolutely necessary -- I'll have enough to recover from without the additional burden of surgery.

"You'll want to spend time with your baby -- hold and talk to him or her.
We will? The idea stabs my heart.
But this nurse has been wonderful, so loving and genuine and gentle.
I trust her knowledge.
"Oh yes" she says. "It really does help to say goodbye.

Christopher phones our labor-support team. I hold him tight as he shakes and tells the news: "The baby's dead." Two friends offer to phone everyone on our birth announcement list --a heroic task.  We're grateful. Just this morning my parents had decided to drive to Boston to await the birth. I phone their hotel every fifteen minutes. At last they've arrived and my father answers the phone.  "Dad, the baby's dead..."  I hear my mother cry out in the background.

We're exhausted. I'm still numb. Bedtime, Christopher and I cling together on the narrow labor bed. The nurses put up the bed railings around us, saying, "Here, you might be more comfortable."  I awaken around 3am and finally cry.

Morning. Molly is there, even though this is her day off. "I want to be here. All I'm going to do today is think about you, anyway," she tells us. The doctor from yesterday says he'll do the delivery, even though it's not his day to work either.  I appreciate his sad, gentle manner. My parents arrive.  Months ago we had invited three friends to be at my labor.  Now they arrive, bringing several other close friends of ours who want support our labor team. I feel cushioned with love.

Yet soon I hardly notice who is there, because the pitocin has my contractions rolling right along. For months I've been wondering and fearing and preparing for labor, and at last I'm just doing it.  I can't even think about my baby being dead, because the sensations command all my attention.   It takes every ounce of concentration to relax, relax my feet, my legs, my arms, my belly, breathe, notice any tension, relax. The contractions fascinate me. They come on so subtly, from nowhere and everywhere at once, yet before I know it they're as intense as any sensation I've ever felt, I can't believe it, I watch my fear, afraid the sensations will, grow even sharper...and then they mysteriously evaporate.

Molly said whenever I've had enough I can have an epidural to make me numb from the waist down. No point in suffering -- don't need to protect the baby. But when do I want it? I want to experience this miracle called labor, to satisfy my curiosity and to know that I can deal with it. Yet I don't want needless pain.

Hours go by, and they feel like minutes. Friends are in and out of the room but I hardly notice.  I move from the bed to the bathtub, dragging my pitocin tubes with me.  The contractions now are like jagged peaks. I ride up, up, up the sharp pain -- will it ever stop?  Friends spread wash cloths across my breasts and belly and baste the cloths with warm water. It feels so good. Is it true my baby is dead?  I can't let in that reality at all.  Around Ipm I decide I've had enough.   I know what labor feels like. And dealing with all this pain, there's no way I can be present emotionally with my baby's death -- I could be giving birth to a truck and it wouldn't matter to me. I want to aware of what's in my heart.

I get the epidural. Within minutes my insides are bathed in numbness, and the contractions are reduced to a mild tightening on the surface of my belly. The relief is blissful. Is this what it feels like to die? Released from pain, I'm suddenly exhausted and melt into sleep. Molly comes in to check my dilation. "Can't I sleep a little more?" Iplead. "Sleep any more and you'll miss the birth! The head is just inches from crowning. It's time to push! Now I'm awake, and terrified.

O god, if I push
the baby will come out
and be dead
and what if the baby's deformed
or decomposed
and when I see my baby's really dead
my heart will
break
break
break

"You don't need to push until you're ready," Molly says. "Take all the time you need." I shake and cry, and cry and shake, friends close around me. After a long while, miraculously, I do feel ready.

Pushing is almost fun. All this effort from the waist up, and nothingness from the waist down. The doctor and midwife cheer me on. The baby is out. A putrid smell fills the room. The doctor says gently, "The smell is from infection after death."

My baby girl is wrapped in a white blanket with a little white cap on her head. Loving hands place her on my chest. I'm astonished -- instead of searing grief, a deep joyful peace fills my heart! "She's beautiful! She's so beautiful!" I keep saying. I know she's dead -- it's not that I'm deluding myself. But the sense of fullness I feel upon holding my baby is overwhelming.  I can't believe I'm feeling this serenity, so opposite of what I thought I would feel. I gaze at her -- bright red lips, a chin like mine, long toes like mine, my god, it's really my child...

Everyone takes turns holding her. Many tears. I'm grateful so many of my loved ones are here, seeing and holding my baby, making her real, she who will disappear so soon.  Christopher and I spend some time alone with her, before we hand her for the last time to the nurse. The doctor keeps taking my temperature -- I have a fever that climbs quickly to 102 degrees. He puts me on intravenous antibiotics. Christopher goes out to say goodbye to all those who had been at the birth.  I fall immediately asleep.  When I awake we sadly leave our wonderful nurses and I'm wheeled from the labor and delivery wing to another floor. I nearly pass out in the wheelchair. Christopher sleeps in a cot next to me. The birth/death day is over.

Limbo Time

Christopher and I spend the next five days in the hospital as my body fights a strep infection, the kind that used to kill women in childbirth.  I'm relieved to be in the hospital.  I couldn't bear to be home and face life-as-usual without my baby. The hospital is a no-where land, a limbo time, a chance to fall apart as much as I need.

Our friends move in during the days, and the hospital wing becomes our community center. Betsy is there from morning till night, coordinating our visitors. My parents visit every morning. Dakota comes every afternoon, letting her kids romp in the playroom down the hall. Many people offer food, counseling, massage. When friends aren't seeing us they're visiting with each other, getting more time to talk than they have in years! This death brings us all together.

My strength slowly returns. At first I need help just to walk to the bathroom. The third night is misery, my hot swollen breasts covered with ice packs, my uterus cramping intensely from medication to help it shrink. Christopher lies in the cot beside me, holding my hand as I cry. He attends to my every need.  I'm glad we have so many visitors in the day, so he can get outside and talk and receive lots of attention. He and I need such different things. I can't stand more than one person at a time, can't stand to talk about anything but Kaia. I just want to sleep and cry.

On the fourth day my fever breaks, and by evening I'm straightening my room and strolling the halls. By the fifth day I have the strength, emotionally and physically, to go home.

Kaia's Ceremony

We've been home a week. All morning I've been crying. I don't want to do this funeral. I don't want to be around people. I don't want to see or touch Kaia's ashes. I don't want to let my baby go.

The ashes are in a clinical-looking white cardboard box, about eight inches square, with the label BABY GIRL, SLEPIAN. With dread and fascination I open it. The fistful of ashes are tied in a plastic bag. Rough and light-brown, with lots of bone chips, they look more like broken up concrete than like ashes. I pour them with numb detachment into a small ceramic box made by Christopher's beloved mother, who died when Christopher was fourteen years old.

We set off for Cranes Beach and arrive around 5pm. To my dismay, the beach is far from deserted! Couples lie greased on their towels, children shriek at the shoreline, groups play volleyball and dig sandcastles. We head across the sand to find an area less crowded. Friends arrive. Strong hugs, people seeing us for the first time since the death, relieved we're OK. We spread a scarf for the center of our circle. We place on it some lilies and mint brought by a friend, a photo book with pictures of Kaia, some of the many cards we have received, a Tibetan gong, and the dish with Kaia's ashes. We light a small torch pushed into the sand.

The only thing I know I want is to cry with other women. So we begin with the women and men in separate circles, about forty feet apart from each other. The men sing a simple chant Christopher leads. I motion the women to huddle close, and we put our arms around each other and cry. We sing some, echoing the men's chant, and cry some more. I wish we could do this for hours, but I'm aware the men are ready to move on, so the women and men join together in one big circle.

I'm shocked how many people are here on such short notice -- close to fifty. I feel grateful for every one. I feel the presence of all the mothers and babies, especially the women with whom I had shared the discomforts and anticipation of pregnancy. It hurts, but I'm glad they're here.

In the big circle, Christopher tells the story of the Kaia's birth, and others who were present add in. Songs and heartfelt comments from friends. But I feel frozen with hurt until one song finally pierces my shell: "So let her go/ she's a feather in the wind/ gone back to wherever life begins/ and for all the love we know/ she was only here on loan in flesh and bone/ so let her go..." The refrain of Betsy Rose's song goes deep into my heart. I don't want to let her go! Held by friends, I cry a torrent of tears, delicious, relieving. While I cry, Christopher passes around Kaia's photos and the clay vessel of her ashes. People cradle the ashes and cry over the pictures, saying hello and goodbye.

And now it's time.
Christopher and I take the ashes,
and step away from the group towards the sea.
Suddenly, I'm filled with the most unexpected joy!
Like the shock I felt when I first held Kaia!
I'm expecting grief,
and instead I receive deep peace.
I'm letting go.

As we step across the sand the sinking sun lights up the edges of a cloud with orange, and great streams of light, like God's fingers in a Renaissance painting, pour down towards the beach.Kaia! I laugh out loud. I suddenly feel so happy, so in love with Christopher, so touched with magic by the whole memorial.

To get to the sea we have to wade first through a little canal made by the tide. As I lift my skirt and stride in, I feel mythic.  I'm crossing the Red Sea, stepping through a boundary after which I will never be the same. We reach the sea and dance with the ashes, taking turns flinging each fistful into the wind.  "Kaia, we release you!"  "Kaia, thank you for your gifts to us! We rinse the last ashes from the vessel and with our arms around each other turn back towards the group. Again, I laugh out loud! I thought we were utterly private. But when we turn, we see the whole group watching us, standing with their arms around each other, faces glowing from the sunset, crying, smiling, singing.  A wave of love coming towards us.  "Breathe!" I coach myself, and we walk grinning back to the circle. We close the ceremony by singing Kaia's name together three times, each time raising our joined hands above our heads, sending her spirit off.

Before we know it Christopher and I are alone in the car heading home, dazed and exhilarated. How did that service become so powerful? We feel the awe of tapping into something much larger than ourselves. We decide to go out to eat to talk it over, and sit cuddled and exultant in the restaurant like two shining newlyweds.  The waitress would never guess we just came from our daughter's funeral!

A few days later, a friend slips a letter under our door: "Friends, I will never forget that evening on Cranes Beach. I came to it mourning a life I never knew, mourning a lost connection with Anne, and fearful for my own baby. I left with deep love and appreciation for a little girl who has helped me to celebrate life and the loving connections it brings and who has reminded me that every person, no matter how small, can have a deep impact on others. She has helped heal my terror of death and its finality. I will never again walk at Cranes Beach without thinking of your beautiful child and how she, and you, have deeply touched me.

Day After Day

The space around me is vibrating. Around my arms, chest, breasts, belly, in all the empty spaces where a baby would be, the emptiness shimmers and aches. The silence around me thunders in my ears. No baby's cries. Every molecule of bone and flesh was poised for one thing, and one thing only -- to mother this baby. How can the flesh let go?

Only through time and tears. I cry whenever I feel like it. It doesn't matter where: in a Mexican restaurant sharing hers d'oeuvres with friends; alone in the car on the way to a business appointment; at a barbecue, when I'm struck in the heart by the squeals of children running through the sprinkler. I know that the most important thing I can do is to let this pain pass through me whenever I feel it. I know this is how I will be healed. I remind myself that even though it's embarrassing, sharing my pain is not a burden to my friends. The pain they imagine for me is often more fierce than my actual experience, so when I cry around them they actually feel reassured. They see that the tears come and go, and life goes on. Sharing my pain gives them permission to share their pain too, and we all grow closer from it.

One day at a time. Don't think about how I'll deal with next month or next week or even tomorrow. My job is to heal. There's nothing more important for me to do than to take the best care of myself I can. My life is simple: one or two hours a day I set up specific times with friends when I can cry as hard as I like. The rest of the time I hang out, talk if I feel like it, sit by the pond, go shopping, watch videos. I don't feel like doing much. I contact some other mothers whose babies died.  I read a book about recovering from stillbirth.  I try to eat and sleep and exercise so I don't turn grief into sickness. I wait for the days to go by.

I want to wear a giant sign around my neck: BE NICE TO ME! MY BABY JUST DIED! I can't stand being around people who don't know I'm dealing with this momentous loss! The cashier at the grocery store. The couple down the beach, swinging their little girl between them. They all think I'm an ordinary woman going about her ordinary day. They don't feel the scream beneath the surface, the heart rubbed raw. I hate my pain being invisible. I can't stand being around people who don't know.

I can't stand everyone knowing. Pregnancy is so goddam public, everyone who has seen me in the last five months knows there should be a baby in my arms. Where's the baby? Pregnancy is public, yet this pain is as personal as the cells in my own body. I can't stand it. I walk down to the pond at the end of my street to draw in some comfort from the ducks and the quiet waters. I imagine the eyes of my neighbors, pitying, concerned. "There's that girl whose baby just died. Poor thing!" I feel conspicuous. I dread when we'll first meet, their gooey eyes, their awkward silence. I dread hearing again, "Don't worry, you'll have another one," and other tactless things people say when trying to comfort but not knowing how.

Down at the pond I see a friend of a friend feeding the ducks. My heart thumps as I approach. Does she know yet? Now she sees me, and I can see it in her eyes, yes, somehow she has heard the news through the speedy grapevine. We hug. There are tears in her eyes. Now what do I do? I don't feel like telling the story for the hundredth time. Yet all this person probably knows is that my baby died. She doesn't know why or how, or how I'm dealing with it. I wish I had a card with the whole saga written up. "Here, read this, see you later.”  But I know information is not the essence of what she needs. She needs to be with me, to sense my pain and my intactness, to express in the silence her own pain and fear and love. Oh, but it's work. Telling each person is grueling, but afterwards I'm relieved. Another person who knows. One less person to tell. Once again, to my surprise, after my initial resistance I feel nourished by the recounting, by sharing the pain and letting in her love.  I return from the pond a little peaceful.

Could I have done anything to keep her alive? Maybe if I hadn't sat so much at the

computer... If only I had charted her kicking more closely ... Maybe if I had asked to be induced... I let these thoughts pass harmlessly through me, like the annoying but innocent buzz of a fly. There's suffering enough, no need to add to it. We've been over the evidence with the doctor and midwife. Kaia gave no advance clue. There's no medical explanation. There is nothing anyone should have done differently.

Why did my baby die? Was it a meaningless accident in a meaningless world? Was it Kaia's choice, to leave just in the nick of time? Were we being punished for not wanting her badly enough? Were we divinely chosen to receive the special gift of her death? More sharply than ever, I see there is no way to know the "true" meaning of anything. There is no meaning to her death, except whatever meaning I choose. For the time being I choose that she loved me and that leaving is what she wanted. Not because I believe it's "true", but because that is what gives me greatest comfort. I'm glad there's no medical explanation; it makes it easier to believe the spiritual one.

Everything in my daily life shouts "WHERE'S THE BABY?" Here's the chair where I was going to nurse her. Here's my neighbor who had offered to babysit. Here's my favorite greasy spoon diner, where I looked forward showing her off to the waitress. I refuse to avoid what's painful. What am I going to do -- hide in my room? The hardest part is being around the other new morns in my neighborhood. How I had fantasized the hours I'd spend with them, nursing our babes together, comparing joys and tribulations! Now there is this painful awkwardness between us, jealousy and guilt, fear and sorrow. Deliberately I go visit them all, hold their babies, ask to hear their motherhood stories, and cry about Kaia with them. The opportunity of being new moms together is forever gone, and we mourn that together. Loosing Kaia is bad enough -- I'm determined not to lose the friendships, too.

Sympathy cards come pouring in. Christopher and I savor every word, even the dumb Hallmark ones. Each card brings relief -- ah, someone else who knows, someone else who shares the sadness. As weeks go by and the mail continues, we feel compelled to let people know how much their cards matter. Although we know no one is expecting a reply we send a letter to over 120 people.

Many of you expressed pain at being powerless to lift the burden of sorrow from us.  Yes, the grieving and healing is ours to do; But it's not true that you are powerless. The oceans of love and concern we received transformed our experience of Kaia's death. We feel deep loss, but at the same time we feel magically enriched cradled in a community of caring more vast than we ever imagined...

It feels good to give back to those who have given to us. Each time someone is moved by Kaia's death it makes her existence feel more meaningful. When she touched so many, who are we to say she didn't live a complete life? I'm amazed by the expanding ripples of her influence. I suspect there must be hundreds of strangers I will never meet who have heard of Kaia. So much for the self-deprecating notion many of us carry stubbornly in our heads: “I don't really matter." Each of us touch more lives than we ever dream of, and Kaia is proof.

Christopher and I try hard to be patient with each other. We need such different things these days! He's engrossed with work, busy writing his book, ready to move on from this death. While for me, as time goes on my grief comes up even sharper. Though he's always kind, I can tell he's bored my pain. I'm hurt and angry. Why isn't he grieving like I am? It's not fair! How come he gets to have his baby -- his book -- and mine's gone! Once I'm reassured that he's not just avoiding feelings (to emerge later as ulcers?) I have to accept that he just experiences this death differently from me. Kaia didn't live inside him for 42 weeks, she lived in me. I cry with Christopher often, but I try to get most of my support from other women.

For nine months I've been anticipating becoming a parent, imagining everything in my life changing. Suddenly time has jumped back a year, like the needle of a phonograph skipping back just when it was about to move to the next song. I feel profoundly disoriented. I'm not pregnant, and there's no child. I remind myself that time did not skip. I'm a parent right now -- I'm just a parent of someone who died, and that's a different challenge. With a friend's help, I arrange a small gathering of mothers.  We cuddle on the blue carpet of what was Kaia's room, light a candle, and affirm my motherhood. "Children are our teachers. You're certainly learning from yours, just as I'm learning from mine!" "Who knows, in the future I might also have to face the death of my child. You just sped into it. Instead of feeling like time moved backwards, you could consider that it fast-forwarded!" I feel nourished by being one of the moms. Most new mothers are asked every day about their children. "He's pooping a lot today." She had me up half the night!"  I can't talk about diapers or sleep, but I decide to coach my friends to ask me, "What are you learning from Kaia these days?"

How do I have a relationship with a dead person? I've never been this close to a dead person before. I will never know Kaia the infant, toddler, child, adolescent, grown woman. That is the Kaia I grieve. But Kaia the spirit, whose life touched mine, will always be with me. What do I mean by that? I don't know, but I feel it's true. I talk to her. I let her talk to me. I realize I need another way to feel connected to her besides feeling my grief. I can feel myself caressing the pain, milking it as proof that Kaia was real, our bond was real. But after I die, I don't want the thought of me to fill my friends with pain -- I want the thought of me to make them feel loved and happy. I'm sure that's what Kaia would have wanted, too.

It would help to have something visible, something in the physical world which can represent my relationship with this invisible child. I imagine a ring. And I find the perfect one in the first store I try, a smoky round moonstone flanked by crescent moons of silver, simple and magical. Just as a wedding ring makes everlasting love visible to the world, my ring will show the world that I am a mother, and my child is always with me. I touch the ring a lot, and it brings me a surprising amount of comfort.

Going On

Two months after Kaia's death. Christopher and I and our housemates finally pack away the baby clothes and put the crib in the basement. I tried to do this a few weeks ago, but ended up sitting on the floor crying in my friend's arms, telling her how I had marveled at each tiny soft t-shirt and jumpsuit, imagining my baby in them -- my baby!  But today I'm suddenly ready. Goodbye baby clothes. Packing up the room I feel sad but relaxed.

By now I've heard dozens of stories of other dead babies. Almost ever person I talk to knows someone who had a stillbirth. Why is this kept so hidden? Why did I think stillbirths only happen to the malnourished, to those without medical care? The myth is that if you eat right, exercise, and get good care then your baby will be fine -- as if life and death were so under our control! I read the statistics:  stillbirths are 16 out of 1000 in the U.S.  That's almost 2 in 100!  But in our death-denying culture, you would think stillbirths ended with the pioneers.

I keep thinking about the women in my pre-natal exercise class. By now most of them must be attending the post-partum class, carting rosy-cheeked infants with them. I feel bad just disappearing, as if women whose babies die fall off the face of the earth, but what should I do? I call the office manager. She's so pleased to hear from me! Yes, most women whose babies die never re-contact the Center. She knows of two other women who disappeared from classes after their babies died.  Would I like to contact them? I'm nervous, but I do. The three of us have a wonderful time over lunch, comparing our recoveries and talking about how deserted we felt by the Center. Later we attend a staff meeting at the Center, share our stories, and suggest ways they could reach out to folks like us. I feel healed from this work -- completing what feels unfinished, giving back, helping others who may go through similar loss.

I used to fantasize about my greatest fears for the future. How will I ever survive if

Christopher dies? What if I get a debilitating illness -- could I manage chronic pain? I acted as if practicing my pain would make me better prepared!  Now, having lived through a pregnant mother's worst fear, I see the futility of such practice. When something happens, you deal, that's all, because you have no choice. In this crisis, I've discovered resources within me and around me I never knew I had. Whatever happens in the future, I trust the same will happen. I'Il deal. I can let my fearful fantasies go.

My need to grieve is like being in a room with the radio on. The first week after Kaia's death the volume was turned up so high all I could do was listen to the radio. The next week, I could ignore the radio for a few minutes at a time -- hold a discussion, admire clouds and flowers -- but the radio's chatter was always demanding attention.  Weeks went by, and it turned into background hum, more like an air conditioner, always present but easy to tune out. A whole hour could go by without me noticing the gentle roar. And then one week I noticed with a start that the radio was still in the room, but most of the time I didn't even notice it was there.

I feel blessed. I feel connected with every woman who ever grieved a child, the tens of thousands who mourn with me right now, the mothers in war-ravaged Eritrea, the mothers in Armenia who dug babies from the earthquake's rubble, my great great grandmothers in the Russian stadtls, and the hundreds of women in US hospitals this very day who are holding dead newborns in their arms. When you risk being a vehicle for life you may also be a vehicle for death, for they are inseparable, and the power of each is the same power. We women do this, and have done so since the species began. Our hearts break, and we are strong enough to go on. And I, who have been protected all my life from misfortune, have joined the ranks of the unbearably human. In one humbling blow the security of my life's plans was ripped from me, and with it the illusion of control. I stand naked and proud, just human, like all of us, with nothing to do but go on.

Thank you, Kaia, for this gift.

All responses welcome!                             
Anne Ellinger
anne.ellinger@gmail.com
written September 1990

Grief Doesn't Knock

By Sadie Dybizbanski
November 25, 2015

Grief doesn't politely knock on the door of your heart and wait to be invited in. Grief doesn't greet you politely with a warm hug and hostess gift.  Grief breaks down the door, shatters the glass panes of the windows and fractures holes in the walls.  The roof caves in as the grief arrives and barrels through the structural beams.  Grief threatens the security, warmth and joy where your heart desires to reside.  Once the walls have come crashing down, the cold wind blows through with memories, what-ifs and deep dark sadness of how you dreamed your life would be.  And then the absence arrives, the emptiness where she should be spreads out among your thoughts.  You are now consumed with this grief that wasn't invited but feels known so you ask it to stay.  Where this grief is there is also closeness to her, the familiarity of the pain reminds you that she was once in your arms, a thought that seems distant when grief has left.  Grief is messy and clumsy.  The destruction left behind by grief leaves you feeling broken.  Grief slowly slips away, as love and the distractions of life arrive to the torn down door.   Distractions barge in, but love stands at the door and waits to be invited in.  She tells you of her friend Joy that is on her way to your heart if you just says yes.  Love promises that your heart can be rebuilt, that windows will let light in again, and that the roof will provide shelter and keep you warm.  If only we had this same choice when Grief arrived, the choice to say yes or no, not today.  

Eva's Story

Eva's Story

My name is Sadie and my husband of 11 years is Arthur.  In 2010, our daughter Eva Margaret was born and died in our arms 7 weeks, 6 days later.  Since her life, we have struggled with grief, infertility, and a subsequent miscarriage. Two years ago, our rainbow baby, David, was born and has brought great healing. It's true; love heals all things.  We have walked a long journey in the last five years that has strengthened our faith in God and our commitment to one another.  It has taken me five years to finally put Eva's story in writing.  The grieving process has been long and grueling.  When asked by the Empty Arms Bereavement Support community to write a blog post for their "Meet the Family" section, I thought, "This is my chance to share her whole story."  It was just the motivation I needed; my favorite community organization and a short deadline to keep me from procrastinating!  The story of Eva's life has been building inside of me for too long, it is ready to be shared.  In honor of my Eva Margaret's 5th birthday on August 14th, and her 5th anniversary on October 8th; I present to you the story of her life.

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Looking Back

by Carol McMurrich

In 2013, I wrote three blog posts on the 10 year anniversary of Charlotte's birth, at three different times of day. They document my searing memory of that day, of the events that marked the beginning of the rest of my life. There is some of my present day woven into the prose, but mostly it's the visions and realities that both feed and haunt me to this day. I wanted to share this because we all have incredible details to our story, and often nobody to witness those details. Writing has helped me incredibly to weave the truth of that day, with both its difficulty and beauty, into my life right now. 

5:30-8:30 AM, May 13, 2003

There is a space that happens between last night and today. It is the space between hope and loss, between optimism and despair. Somewhere in the middle of the night lurk those dark hours, quietly patting around the house, water leaking. She was dying. I had no idea.
When I woke up this morning it was already five thirty. I don't know if I've ever slept all the way through the fours before, this being when I was told that she died and my world collapsed. By five thirty I was already calling my dad. "It's not good news," I told him. "The baby died. We don't know why." I was sitting in a room that I remember as small and white, although I now know that my memory is not accurate. Perhaps that memory was just the world closing in on me, squeezing me into a space that was smaller and smaller, until I could no longer breathe myself.
Right now it is eight thirty. At this time I was moved to a birthing room. My labor had all but stopped from the shock. There was talk of induction, of maybe even an epidural. I had told my family not to come. I was hugely pregnant, freckled, suntanned, healthy. I was in a birthing bed, surrounded by pretty furniture and a big window that opened to a courtyard. Outside, the lilacs were blooming, and a heavy rain fell. My baby was dead. I had no idea what to do.

-----------------

8:30-12:30 

It is now past noon. In my mind, the rain pours down and the sky is steel gray, though I cannot see it through my window. As I type today the sunlight is warm on my legs, but I can still feel that cold rain. A social worker has come to see us. Gently, she has told us we can call our families to come to meet our baby. She tells us that people often take comfort in spending time with their babies after they are born, and take photographs. We think this woman is lovely and kind, but her ideas don't appeal to us. We want no witnesses to this tragedy, this failure. We require no documentation.

Yet only an hour or two later, after the epidural is in, and I have dozed through tears and held Greg for some time, I realize I want my family here. I want my mother's arms around me. I need to see the earnest blue eyes of my father, even as they weep for me. I bring the social worker back and tell her I want to call my family. Her eyes are warm. "They are already here," she tells me. She goes back out, to the solarium family room which has been cleared of all other waiting families so that my family can have a private space to grieve. I learn that as my sister entered the ward, she heard a baby cry and collapsed onto the floor in grief. The social worker warns me of my sister's emotion, but when Stephanie comes, she offers nothing but love and support. She knows to channel her grief out, not in.

We are hugged and loved, but only for a short time. Our stamina is low. We needed only a moment, and then they are gone. My mother cries after she leaves, wondering how this blossoming, beautiful, healthy looking daughter could be handed such a sentence. They return to our home, and begin to pack and make phone calls.

Moments ago, on this real day, ten years later, I sat with Maeve in the rocking chair. She slept in my arms, and I hesitated before lying her gently in her crib, Charlotte's crib. I thought about how ten years ago, this room became a museum. Ten years ago this moment my mother and sisters combed through every inch of the house and picked out every thing that tied us to parenthood and put it into a blue tupperware bin which they then deposited into the nursery. Fortunately, somebody had told them not to touch the nursery.

In a book, upstairs, pasted in a memory book as if it were a document to treasure, is the phone bill, which itemizes each long distance call that went out from our home that May 13th. Each person from afar that needed to be notified of the sad news. Most of the calls are one to two minutes long. There are three pages of calls. I kept the bill. It is part of her story.

Right now, those calls are happening. I am in shock, wide eyed and confused in a hospital bed. My body is laboring, but I can't feel it. At home, my sisters and my mother are on the phone, telling everyone the same thing: The baby is dead. It hasn't been born yet. We don't know what happened.

-------------

12:30-6:30 pm

It is now six thirty. I have felt labor as my epidural wore down, and been told I should push the baby out.
How was I supposed to do that? I pictured myself pushing my baby off a cliff. When she was born, she would be dead. This would be real.
It will be the hardest thing you ever do, my midwife said. But you just have to do it. She was right. And I did.
Charlotte was born at 2:14. I pulled her right onto my belly and clung to her. She was the most amazing, beautiful, perfect little person I had ever seen. The heavens opened and the angels began singing and golden, streaming light poured down, just like with every birth, except for the voice in my head screaming NO, NO, NO.... as I simultaneously realized what I had been gifted, and what I had lost. I had had no idea about either prior to this moment. Suddenly it was truly real.
I learned in that moment the most intense, heart wrenching, magnificent lesson I've ever learned: which is that it is better to have loved than to have never loved at all. In that moment, even as I realized that she was already gone and I would never get to keep her, I felt incredible, huge gratitude to know the feeling of a mother's love. I held my own, sweet newborn tightly against my breast, ran my finger over her delicate nose and tiny lips, and traced the curve of her ear. I learned my baby girl by heart and felt the most beautiful, sweet, pure love I had ever felt. I knew instantly, even as the truth of what was about to happen-- her departure from me forever-- that I was going to feel forever grateful for having had her. I knew that her loss, and the huge impact that loss and grief would have on my life, would not ruin me.
It is now six thirty. We have not slept in thirty six hours. We are waiting for Greg's mother to come and meet our baby. She is on a plane from Virginia. His father is coming from Calgary, their second home, and will not arrive until after nine. We have already decided that we cannot wait for him to arrive. We are too tired. We will have to say goodbye to our baby girl before he gets there. I do not know why we decided this. It is my only true regret.
We pass our baby back and forth, kissing her, admiring her beauty. We are afraid of her body changing, although it has not yet. She is still warm from our bodies, but we are afraid. We want our memories to be sweet. 

Tick, tock. Tick, tock.

 

Questions to ponder...

This is a repost of a blog musing from 2008... something I think could rouse thoughts and opinions for anyone in this community. 

How it is possible to be up to your neck in self-pity and still have compassion for the relative heartbreak of anyone else?

Sometimes here I start to feel like a traitor, an imposter, a cruel, wretch of a person hiding in the skin of an empathetic, supportive, listening ear. Truth be told, I just can't think of anything worse than a dead baby. So when somebody is starting in on their own worst day, it can be so hard not to let the caustic, dripping words leak out of the corner my mouth, unintentionally.

A good friend was sharing with me, a month or so back, about a friend whose baby suffered an injury during the birth that required her arm to be amputated after the birth. "Can you imagine?" she said to me, "Your beautiful baby, losing an arm?" I could not imagine. I did try to imagine the awful pain for those parents, pictured my Liam or Aoife, seemingly perfect, off to the operating room to become un-perfect. Truly, truly, in my heart of hearts, I felt an enormous surge of pity for them, imagining the horror of the experience, the aftermath, the pain of having a child with one arm when everyone else's child has two. But still, as I was imagining this, and feeling their pain, I also thought these words, "Can you imagine giving birth and the baby ends up being dead?" Ummm... yeah. This is where I feel like a jerk. Because I do think those people drew a short straw, too. It's just that to me, it doesn't seem short relative to mine. If I could have Charlotte back, minus the left arm, I'd take her.

But I've worked, truly hard, to really understand that each person's worst day is truly their worst day. I believe this, truly. But it's THEIR worst day, not mine. And if their worst day happened to me, after having had MY worst day? It's possible it might roll off my back. Kate's post was in reference to birth trauma, and people mourning the loss of the birth they'd imagined. True, and valid. I can see myself in those shoes, had I been given those shoes to walk in. But here's what it's like for me. I was having lunch with an old friend the other day, and told her of Liam's flip between 8 and 10 cm, and the cesarean that ensued.

"I'm sorry," she said. I looked at her pretty hard. "Don't be," I said. Truly, I meant this, it almost seemed comical to me that she was pitying me for having had a cesarean. But this is true for so many people, that they really do need a condolance, because they've lost an opportunity they felt was theirs to have had. What I had was not a loss, but a gain: I had a breathing, living child. The way he came out literally (and there truly is no exaggeration or denial here) did not faze me. If anything, it was a dream come true. For that year before, I had spent so many hours daydreaming about how they might have saved Charlotte if only they had been there to save her. Now here they were, performing the heroic rescue I had imagined. The birth cry was all I needed. I did not care how I got there.

And then there are my childless friends, still working through love crises of their own, who have related the loss of a lover to the loss of a child. For this, I must really bite into a leather strap, because love does not equal love, and I just can't say anything more on this, except to try to remember that this is what they know.

So I'm working on this. I feel as if I've come 150% in this field, because I don't resent people anymore for grieving things that I myself would not grieve. But I do, without apologies, often feel that my worst day was, well, worse than their worst day.

(and that's me, 4 years out. Does it feel different? Yeah, I think now I've probably come about 300%, but I still sometimes feel like a jerk)

 

Ingrid Haiku

by Autumn Gordon

Autumn wrote these haiku about her firstborn daughter Ingrid Elizabeth, who died from complications of prematurity in the winter of 2013. Thank you so much, Autumn, for sharing them with us. 

Was and is Ingrid
Oh Love! My Lovely, In Love
Over the moon with you, sweet

Skin shades of red
Strong legs splayed all akimbo
Swaddled face, nose, lips: perfect

Watching from outside
You squirm or sleep in twilight
In and out you breathe

A longing arm in
To touch the universe, you
What wonder I see

Today, I hold you
Your body against my heart
That is where you dwell

Navigating the Everyday

By Lindsey Rothschild

Going in for a coffee at a local cafe, I was relieved to see that the counter person was a stranger. Then the woman entered who had served me breakfast on a different day, a day when I was pregnant, ravenous and picky about food. I had ordered a huge breakfast and talked to her about being pregnant. Today, I saw her and sunk down in a high-backed armchair. Would she ask how the pregnancy is going? Would she look at me perplexed and ask me, "weren't you pregnant?" or would she figure she didn't remember the timing quite right and ask me "what did you have?" I couldn't bear any of that. Then I went to our CSA to pickup our farm share. I hid my body from the owner of the farm who always has her baby slung to her hip. Wouldn't she wonder where my belly went? Then I dodged all the mom's w/ babes picking up their shares. They used to make me happy. "Soon, I'll be like them," I used to think. Then I thought I recognized a man from the Support Group, so I smiled and said, hi. I'm not really sure if it was him or not. I need to get my haircut but can't face my hairdresser... guess I'll find a new one.

My neighbor across the street from my new home came over to introduce herself. She was friendly, beautiful and pregnant. I was panicky and cagey. Had another neighbor told her about our loss? Would she acknowledge it? She didn't. How do I not acknowledge it? When meeting someone new, it seems like a critical piece of information as to who I am... why I'm sad and distant and have a tendency to stare off into space. But, she's pregnant with rosy cheeks and optimism; it seemed too cruel to stand in front of her as living proof that pregnancies don't always end with a a baby. So, I smiled, a close-mouthed, polite smile and said it was nice to meet her. That's all.

Tell me about him

A beautiful post by Sara Barry, mother to Henry, who should be seven years old now. Sara is always full of sage words, and I'm so glad she decided to contribute this month. 

Tell me about him

Even now, nearly seven years after my son Henry died, I struggle through December. 

Last year over coffee in that ever dark month, my friend Beth looked at me across the table and said, “I wish I could do something, but I know I can’t. Can you tell me about him?”

I paused, because nobody asks that question. Perhaps the last time anybody asked me that question was when Carol sent a note from Empty Arms after my first meeting, giving me a space to talk about grief but also to tell about Henry himself—his “eyelashes and toes.” 

Usually people ask, “What happened?” 

I don’t blame them. It would be the question on my mind too if somebody told me their baby died. It’s a fair question but not an easy one. It makes me tell the hardest part of the story instead of the good parts.

I don’t get to talk about how we would lie on the couch together while our breaths settled into rhythm, both of us getting calmer and more peaceful, how his oxygen monitor showed me his oxygenation going up, his heart rate settling down.

I don’t get to remember how he wailed through is first bath or loved to suck his thumb. 

I don’t get to tell how he stared at the faces of people who held him or how he startled to his grandfather’s whistle. 

I don’t get to talk about how his smile flashed across his face like a cardinal across a winter landscape, lifting me up each time. 

Instead I talk about him being taken away to the NICU and about Down syndrome and heart defects. I tell about surgery and tense ambulance rides and how he almost died in October. I talk about how he got better, got home, got sick again. I remember racing to the hospital in a snowstorm as his breath deteriorated, how my husband got so sick he had to leave, how Henry coded more than once that last night. I’ll tell you how the machines started beeping and people came running, how I sang to him, and how he died on December 17. 

If you ask, “What happened?” I’ll tell you.  

I absolutely need spaces to tell that story and talk about grief. I need to tell and retell those hard parts. But I need to talk about love and hope and dreams too. 

“Can you tell me about him?” I needed the chance to talk about my son, and I didn’t even know it. I smiled and cried, and told her about my baby boy and his smile. 

Can you tell me about your baby? Your love? your dreams?

A Father to a Son

Ryan Tyree, dad of Dylan Marshall, born still on May 18, 2011, writes, "here's one from the days when the flames were all around me".

These words alone deserve a posting, how accurately they describe the oppressive heat of grief that threatens to suffocate a person in the early weeks and months.  They gain power, however, when paired with the poem below. Thanks, Ryan, for sharing. 


A Father to A Son

 

you should have been there with me

at the graduation proceedings

you couldn't be there with me

at my best man's wedding

you were not there with me

at church this morning

you won't be with me

in VT this summer

 

since you're in a box

a little fucking box

on a shelf

in the room

we prepared

for you

our firstborn

son

 

 

by Ryan Tyree

The Club Nobody Wants to Join

by Lisa Dana Goding

Imagine if you will, an anguish so fierce, you can feel it from 10 feet away. There is quite an awesome amount of uncontrolled power in a grieving woman who has lost a child. It is almost akin to a wild animal.

Women like me who have had premature preterm rupture of membranes (PPROM) have a cute little name we use- PPROM Queens. It kind of lightens up the reality of what happened. It almost sounds like a sorority except no one ever asked to join it.

I have encountered so many wonderful and caring women- for this I am ever so grateful. I have met women who have had almost the exact thing happen to them. I have come to know women who have experienced the many possible things that can sadly cause a pregnancy to end with "fetal demise." I have also met women who had normal pregnancies, only to watch their special babies die days or weeks after birth. No matter when or how it happened, we are bonded together in this surreal space. We are women who all experience that raw feeling- emptiness, dread, longing- and yearning for what might have been. A woman with a dead baby- we sit together behind a curtain. I never even thought I would be part of this club and didn't really care to peak behind the curtain to see what was there.

I think that the whole topic makes people uncomfortable. What do you say to her? What if I say the wrong thing? Maybe I should leave her alone until she is ready- she knows I am here for her. All these concerns have the opposite effect that was intended. In fact, they actually increase the woman's loneliness and isolation. But even with all the support and love in the world, the road is a lonely one that must be travelled alone. I am on that road now and wonder where it will lead.

I have come to realize tonight that the healing process is not a stepwise progression as I had thought it might be- and counted on to be. I imagined each day I would be slowly plugging away, taking one step in front of the other, feeling a little bit better and a little bit better. Then one day in the not too distant future I would be talking about how far I have come.

Rather than that, the process seems to be much more of a spiral. To be sure, there will be times when the hurt is less, when I actually feel happy (or at least calm). And then there be a point when I will circle back to a place of pain and trauma. The spiral, however, doesn't mean I am back at square one. I see it more like a tornado or a coil: I spiral back, but I now find myself in a new place, a slightly changed woman from the last time I was immersed in the grief.

I am so open and ready to hear about how others have coped with this kind of loss. What can I do to get out of my own way so that I don't make Sally Ann's memory something that overwhelmingly pains me? I want to be able to think of her and smile, knowing that she gave me the most special of gifts-hope.

 

This is an excerpt from Lisa's blog, which can be found at www.hotmamabear213.blogspot.com