The Start of School—Milestones Missed and Marked

Healing a Heart
By Sara Barry


“I can’t believe they’re starting 3rd grade. It goes so fast!”

When a mom I know said this a few weeks ago, I remembered back to the summer when those third graders were new. A baby boy, a baby girl, another baby boy with oxygen and Down syndrome.

I started letting go of the idea that my son would keep pace with his peers early on. I got ready to mark his own milestones, not measure them against others. But still, I assess where he’d be against these babies born within days of him. Eight-year-olds. Third graders.

A few years ago when Henry should have started kindergarten, I found myself sobbing in the dark one night in anticipation of this new first I would miss with him. Now, with the kids I thought would grow up with him on the cusp of third grade, I find myself sighing slightly when it comes ups. I hold it for a breath and move on.

***

In the fall of 2007, when Henry was a baby, I sat with him on the porch steps on a clear morning watching a friend from our neighborhood get on the bus for the first time. Later that long fall, when Henry was hospitalized, I told him again and again about the school bus and the friend who would sit with him on his first day of school. That story that he would go to kindergarten in a few short years was hope that we would get out of the hospital, go home, live a normal life.

The next September, I watched that same friend get on the bus for first grade without him in my arms. I waited each year, anticipating the day he should get on that bus. And the year he should have, I sobbed. Still, each fall, some piece of Henry is with me, tucked into a space of memory and dreams, there but not there.

I’ll wait for the bus with my girls soon, ready for a new year and the learning and changes it will bring. This year my son would be starting third grade. Another milestone missed. This year my daughters are going to first grade and preschool. More milestones met. The first day of school is coming, and I’m focused on what is, an the golden glow of hope and potential that waited with me eight years ago still hovers around as we wait for the bus.

***

Is the start of school a milestone you miss? What would be milestones have you marked recently?


What Helped in the Early Days

Healing a Heart
By Sara Barry

I am wondering if there was anything you read or got from folks that was at all useful/helpful when you lost Henry? No pressure to answer, of course. And thanks for letting me ask.

I was sitting alone in in the late last glow of summer sun on the sun porch at my parents content from a day at the beach when I read that email. I took a deep breath, felt the hollow-eyed, empty weight feeling of those cold, dark early months right after Henry died.

What had helped?

In those dark nights, I needed, desperately, to know I wasn’t alone. I needed to hear other stories. And I found them, late at night, when I didn’t shut down my computer because I was afraid to shut down my body knowing that whatever tiny bit of breathing room I’d created throughout the day would close up as I settled toward sleep. I dreaded going to bed, so I stayed up late, distracting myself.

A few weeks after my first Empty Arms meeting, I Googled a poem Carol had handed out and clicked on to version after version, until I found one on a blog, written by a mother whose daughter was stillborn . . . it sounded familiar because it was. I’d stumbled onto a blog I didn’t know Carol had.

From there I discovered Glow in the Woods and the world of babyloss moms. I found a tribe. I needed that tribe and their stories and their knowing nods and virtual hugs. I needed them just as I needed my amazing tribe of family and friends and neighbors who brought meals and sent notes.

Send Notes

I told my friend:

  • send notes or an emails often
  • send one around 6 or 7 weeks after the baby died
  • send one around her due date
  • send one whenever you think of your friend
  • send one around Mother's Day
  • end one next year around the time the baby died

I told her to put a note on her calendar or a reminder in your phone, because she’ll get busy, times moves fast, live goes on . . . all those clichés. I know because I mean well and I know how much a note can mean—and sometimes I forget too.

Listen

In the first year, I was blessed with understanding, supportive family and kind friends. What I remember particularly is two friends who checked in with me monthly, one setting up time to get together for tea, the other calling from a distance. Both met me where I was on the day we spoke, however I showed up; both held space for me. They didn’t rush to fill the gaps. They didn’t try to make it better. They let me tell my story, and as much as I needed to hear others’ stories, I needed to share mine again and again and again.

This is the story I told over and over when people asked, “What happened?”:

Henry was diagnosed before birth with a heart defect. We learned shortly after he was born that he had Down syndrome a full AV canal defect. He needed oxygen and was taken away to the NICU at another hospital before I had a chance to hold him. I held him two days later. He spent 9 days in the NICU and came home on oxygen. He had open heart surgery at 3 months. He recovered normally from surgery and came home off oxygen for the first time. We were excited to have him healthy!

Two weeks later he seemed to have a cold. I took him to the pediatrician, who immediately put him on oxygen and called an ambulance. As soon as we got to the hospital, Henry was put on a ventilator. Two days later he was transferred back to Children's Hospital in Boston. We were there for three months, during which time he was on and off the ventilator, underwent a lung biopsy and two cardiac catheterizations, and a million other tests. He almost died in October from an infection, but pulled through.

In December, he was finally discharged on oxygen and a daunting med schedule. We were excited to bring him home, but two days later he got sick and ended up in the hospital again. He was put on a ventilator and nitric oxide. He crashed three times; the third time they could not bring him back. I was there, holding his little foot and singing to him when he died.

That’s the story I told because it’s what people seemed to want to know, and because when trying to navigate life in those early days, falling back on fact helped me get through.

The other parts of the story I told in the early days were mixed memories and dreams, hurts and broken moments. I keep telling Henry’s story, my story too, and the story changes as I move forward in time, as my girls were born and as they grow, as Henry would have been doing different things.

It’s been more than eight years since Henry died, and sometimes something triggers that hollowness of the earliest days or the sobs of the first couple of years. Mostly, though Henry is simply my son, who isn’t here. That still boggles my mind, but it doesn’t stop me every day. Eight years later, I am still touched by notes—How are you doing this May? or A cardinal came and sat at my feeder for a long time today. Thinking of you and Henry. Eight years later, I can mention Henry in conversation, share memories of him, answer questions about how old he would be. I can move away from the facts that I shared in the early days and tell more about my baby boy and the six and a half, intense months of his life. Eight years later, I’m still connected to the tribe I found online. Eight years later, I still have friends who ask about Henry and who listen.

***

I love that my friend wants to support her friends in their loss, because every kind act counts when you are grieving.

What was most helpful to you after your baby died?

 

How You Begin Again

Hope in the Rough: Surviving Miscarriage & Challenges Conceiving
By Charlotte Capogna-Amias

It’s been five weeks and five days since my pregnancy ended.  Following my attendance at a support group for women who have miscarried, the facilitator said she was impressed with how well I am doing, and the truth is, sometimes I am too.  

Let me be clear: I was incredibly saddened to lose my baby. It is something I think about every day since it has happened. It went like this: First, I laid in bed and cried for the entire day I found out that my baby did not have a heart beating within me.  I kept replaying those awful minutes when the midwife’s doppler wand could not find the “whoosh, whoosh, whoosh” sound of my baby’s heartbeat. That cold instrument tricked me for fleeting seconds by picking up on my own pulse through my abdomen and filling the static-y air with its subtle thunder. But there were no fetal sounds to reassure the worry rising in my body. And then there was the drive to the hospital for the ultrasound to confirm what my heart already knew to be true. As I drove there numb and scared I kept thinking, “please don’t let this be my fate.” I wanted to live in the white calm that was my life as a woman with a seemingly healthy pregnancy, before the doppler wand signaled that I wasn’t that anymore. 

In the days after the miscarriage was confirmed, it was all I could think about, except for when I was very intentionally distracting myself with all-consuming activities. I learned that sometimes distraction will save you. In the second week, I thought about the miscarriage every day, but I had longer stretches where I could go without thoughts of it floating in and occupying my brain, taking my imagination hostage in that busy place. Now, I find that most of the time, I am not thinking about the miscarriage. I know its ghost still lives in the background, occasionally coming out to nudge me with a pang of gut-stabbing sadness.  It does not offer any advanced warning- it just shows up, lets itself in, and then is gone.

I have been thinking a lot about resiliency since the miscarriage, that raw, strong bone of the wise ones who inhabit this beautiful, terrible world.  I have had a good life in many ways.  I am grateful every day.

Before I began trying to conceive I was so naive. I didn’t really know the realities of trying to get pregnant, particularly trying to get pregnant when you’re nearly 40 and gay. I had plenty of queer friends of “advanced maternal age” (gag) who had been through the process, still, I didn’t truly understand all that was involved until I was in it. I didn’t know that you could miscarry without having any outward, physical signs. And why would I have known any of this?  Years before, my spouse got pregnant with our daughter on the second try; conception and pregnancy came easy to her, even at 37. I didn’t have the same luck and I quickly found out that not only did I have a rather irregular cycle, I also had an undiagnosed thyroid issue that had to be managed.  I became a verifiable Eeyore about the whole conception process. I complained. I cried. I felt repeatedly disappointed with each month that passed that I was not pregnant.  And then I got pregnant and it didn’t work out.  EE-YORE.

I remember when I was first trying to conceive this acupuncturist saying to me, “you have to manifest that you can get pregnant... picture yourself pregnant... imagine your child.” The thing was, though this made sense to me, I could never figure out how to manifest hope that I’d get pregnant, without getting incredibly disappointed with each passing month that I wasn’t. I am a student of the Buddhist teachings and I knew my attachment was causing some of my own suffering.

In the weeks following my miscarriage, this question has loomed large in my brain again: how can I maintain hope that I will get pregnant again, something I very much want, while not getting disappointed if it doesn’t happen readily, or at all?  How can I manage to carry and nurture a pregnancy again, knowing that it could end the same way the first one did?

These questions itched at me, bothered my very core, and I felt this odd sense that I wouldn’t be able to rest until I figured out the answer to this psychic conundrum. 

Recently I was reading an essay in About What Was Lost, a wonderful collection of essays about the experience of miscarriage. One particular piece- a letter exchange between two women who had miscarried- held the proverbial key to my question. One of the women talked about this exact challenge when she was pregnant for a second time after miscarrying. She tried to do what I had thought was the only possible solution to this dilemma: she tried to not to get attached to the baby developing within her. She pushed that life growing within her out of her mind in the early months before she would push it out of her body. She carried on like this for as long as possible, until it was, quite literally, impossible. She had to love and nurture that baby. And love that baby she did. And she also accepted, or at least named out loud, that it could die before it made it to her anticipating arms. So there was my answer: you have to hold both things, things you always knew were true, but you turn away from until you experience something where turning away is impossible. I will keep trying to get pregnant and I am hopeful with a laser fierceness that I will get pregnant again. And I also know that it might not happen quickly, or (knot in my throat), at all. There you have it. I knew that all along, but I couldn’t see what was right in front of me. I might still be disappointed each month that conception doesn’t happen- to deny that would be self-punishing- but at least I won’t be blinded. 

I also started playing this game with myself. I admit it’s a little twisted, but it’s intent is a healing one. As many women who have experienced miscarriage or infertility will attest to, being around pregnant women can be painful. It’s a literal reminder of what you lost and what you don’t have, but long for. I took myself off of Facebook for months because I couldn’t bear to hear another pregnancy announcement, or worse, watch friends and acquaintances swelling with baby when I should have been ballooning as well. But then I realized something: in all my efforts to soothe myself in the five weeks since I miscarried, I found that what helped me the most was talking to other women who had miscarried, especially if those women had gone on to get pregnant. It was too scary to talk to women who had miscarried and not been able to go on to conceive. So my game became this: every time I saw someone in the grocery store who was pregnant, or someone announced they were pregnant over an email (yes, this happens regularly at this point in my life), or I saw a pregnant colleague at the college where I work, I would imagine that they had miscarried prior to conceiving that child.  I know that’s kind of messed up, but it helped me. And you know what?  Some of them probably had.  I could take my poison and make it my salve. 

In the days and weeks since my miscarriage I have been fortunate to receive so much support from friends and family, and this is undoubtedly a major part of why I am fairing as well as I am. One friend has set herself apart from the rest, however. This friend has been the primary person to call me, text me, and email me repeatedly since this whole ordeal began, and explicitly ask how I am doing. And when she asks, “really, how are you doing?”  I know what she’s asking. I’m so appreciative to her for asking me outright.  She is one of my oldest friends and she also miscarried during this past year.  And you know what else? She’s about to have a baby. So when she asks me, “Really, how are you doing?” I reach over and accept her hand; this is how I begin again.

Addendum to this piece:
1) I wrote this many months ago, now I am nearly five months out from my miscarriage. I planned to share it publicly soon after I wrote it, but that never happened, so here it is now.
2) Honestly, some days I am doing really well, and other days, I am not... I think that’s the reality of loss.
3) The friend I mention now has her baby. She’s a girl.
4) My experience with grief is ever-evolving and sometimes regresses. All I can say is that for me infertility is inextricably tied to my miscarriage experience and some days I can’t tell which is worse. 
5) I’m resilient and so are you dear ones.

Thanks for reading,
Charlotte

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)

 

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.

Thoughts from San Antonio...

by Carol McMurrich

May I offer my care and presence unconditionally, knowing it may be met with gratitude, indifference, anger or anguish.
May I see my own limits with compassion, just as I view the suffering of others.
May I be present and let go of expectations
May I forgive myself for mistakes made and things left undone. “

I was challenged, in the opening keynote address of the 2014 Biannual Perinatal Bereavement Conference, to try to connect to a time in my work when I acted with “personal ethical integrity”. The speaker, Cynda Rushton, is an extremely accomplished Bioethicist who works within the schools of Medicine and Nursing at Johns Hopkins University, and she was leading a fast-paced talk on personal integrity when working with the bereaved. 

Ms Rushton encouraged us to think about a time when we worked in a way in which we were very much aligned with both our personal and professional values, in a way in which our actions were very much congruent with what we believed was morally correct. Sifting through memories, I thought of a time when I had the extreme privilege of working with a baby boy who had been taken from this world far too soon. I had been called in by the hospital after his parents had left the hospital to take more photographs of this little boy. I arrived early one bright, winter morning, apprehensive but determined. 

In my work I often arrive to work with families at the time of their loss: if the family is not still with their infant, they have often just left the hospital. In this case, however, the family had been released the night before. I worried that the baby might have spent the night in the morgue. While I know this is, sadly, the ultimate destination for all people in the hospital who pass away, it causes me such distress to think of precious babies needing to go there. 

I shouldn’t have worried. We are so lucky in this valley to work with professionals who are so compassionate, and who care so deeply for the families who suffer losses and their babies. I arrived to find this baby in a warmer, in a delivery room, just as you would expect to find any newborn of any family who had delivered there. 

He was a beautiful, beautiful little boy. What baby is not? But there is something about the deep privilege of meeting a small person who will not be met by very many others that is humbling at the very least. I knew I was gazing at a beautiful face that was meant to be admired by so many others, but that privilege would be denied to most of them. I knew I had a few hours to try to capture him as best I could for his family, and I was determined to do my best. Before I photographed him, I talked to him. I picked him up and held him, allowed myself to stroke the soft down of his cheek, and I told him I was going to take some photographs of him for his Mommy and Daddy. He still had that beautiful newborn baby smell. There was so much beauty in that room. 

I spent an hour, and then another hour. And then another hour, and just one more. How does one stop? Not only did I want to try to take as many photographs as I possibly could of this baby, but I also didn’t want to leave him. Here, with me, in a warm room, surrounded by myself and the nurses who were helping me, this baby remained in the land of the living. How I wished, for his parents and family, that he could stay. 

I hesitate to share that when my time was up, it felt difficult for me to leave him. I wrestled with this emotion: he was not my baby. It felt unfair of me to feel that I wanted to stay with him, to give him one more hug, to feel his soft weight one more time. He was not my baby to love, and I felt guilt-ridden to be there when his parents were not. But there had been a sanctity to the time I had spent with him, and my heart felt connected to this baby. Perhaps some of this came from a selfish place, from wanting more time with my own baby, but perhaps what it really was was just my being human, and being a mother, and a person with a compassionate soul. He was not mine to love, but I loved him in my own small way in that moment. How could I not? 

As I recalled these moments, I felt a deep, heavy feeling, way down in the pit of my stomach. It was not one of despair, or even grief, although sadness was certainly part of what I felt. Primarily, though, I associate that feeling with the deep gratitude that I felt for having the privilege of not just taking those photographs, but having been one of the witnesses to the life and existence of a little boy who had changed his family forever. No doubt somehow he will change our world a little bit, and I was able to meet him. 

It was my hope that this baby’s family would cherish and love the photographs. However, as I prepared to present them with the over 400 photographs I did take, I had to remember to myself that the important part of this work was not the family’s instant reaction to the products of my actions. It was those actions themselves. To have been able to be there, in that room, to capture something that might otherwise never had been captured was a tremendous privilege. To have taken the time, and offered this baby boy my loving hands to try to capture his beauty one last time, was my own effort to give this family a lasting gift. 

I went home and I wrote a long letter to his parents. I still felt uncomfortable that I had spent this time with their baby, when they could not. I worried that they would not have wanted me to spend this time with their son, and I worried about whether they would want the photographs. I worried about whether there were too many photographs. I thought about the time I had spent with their baby, and I cried for their family, for the void I knew now existed in their lives, for the beautiful boy who had never drawn a breath. I felt guilty and awkward for the strange attachment I felt to their baby, and I felt worried that I had let myself fall too deep into the work that I was doing. 

Then, I sat on the edge of my bed, and I breathed it out. I knew I had done my best. I had acted with the intention of giving this family the only gift I knew to give them. I had acted with the intention of honoring their son, of caring for him as any baby deserved to be cared for. I had acted with the intention of doing unto them exactly what I would have wanted done unto myself. I tried hard to breathe out the worry, the guilt, the sorrow, and to breathe in the knowing that I had tried my best to do what I felt was right. 

Again, I reflect on Dr Rushton’s words, which could become a mantra for me: 

“May I offer my care and presence unconditionally, knowing it may be met with gratitude, indifference, anger or anguish.
May I see my own limits with compassion, just as I view the suffering of others.
May I be present and let go of expectations.
May I forgive myself for mistakes made and things left undone. “

Each day, each week, and each month, as I do this work, I seek to maintain the integrity that will allow me to walk with my heads held high, knowing that am a human being simply seeking to serve and support others in their most difficult moments. Regardless of my shortcomings, the areas I am still working on, the mistakes I may make, the things I may leave undone, my intentions are good, and my efforts are honest and sincere.

May I hold onto these positive breaths, and these feelings of gratitude. 

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 

Two

by Lindsey Rothschild

Two. On September 5th, ‘drea held 2 acorns in her hand. It was my birthday. We were on a hike. We had a new house at 2 S. Hampshire. The 2 of us hiked up Mt. Tom. My body was rounding. We were happy. On September 22, we went to meet the 2. Wondering, girls or boys or one of each? 2 girls. 2 girls who would never have long hair and frolic across a field on a fall day. Our 2 girls. 2 daughters of 2 mothers.

2 weeks ago we lost our two baby girls, Baby A & Baby B. At 22 weeks

In memory of Flora and Bea Rothschild

November First

As a group facilitator, it is my job to go first. And so, on this first day of November, a month during which the light will fade, I will share my words first. They are words I wrote many years ago, and while I no longer feel the intensity of the emotion I articulated with this piece, the memory of the feeling rushes back in like water coming through a canyon in a flash flood. How easy it is to return to that place, and how grateful I am not to to occupy it. 

I write as myself, Charlotte's mother, Carol. Charlotte was born on May 13, 2003, our firstborn baby girl. She died from a cord accident sometime in my early labor, when I was still at home. She was born later that day, and spent six hours in our arms. Eleven years and four healthy children later, I cherish the memory of Charlotte as the baby who made me a mother. I stand proud and tall, a survivor of something I would never have thought I could endure. I hope my words will inspire you to share something, too. Because we really are some of the bravest ones out there. 

BRAVE

written on January 15, 2008

Is it brave?
Is it brave that I hung onto my husband and watched the nurse take her from me?
People tend to think of this as brave, as a sign of strength, but when I look back on it, it seems like weakness.

It seems like my animal core should have leapt from the bed, tearing at the white curtain, screaming in a low, howling tone, give me my baby back.

I can picture the scene, I am naked, my breasts heavy and swinging, belly that strange, 7-hours-after-birth pouch, blood streaming out of me onto the floor, probably falling in my emotional and physical weakness onto the floor, slipping, screaming, falling to my face and screaming in anguish.

Anguish.

This really could have happened. Should it have happened? How could I just let the other scene happen, where I just sit there, hiding my eyes, not wanting to believe the turn my life has taken?

Maybe it was strength. Maybe it was just not knowing what to do.

I still cannot believe I did it, one way or the other. Nobody should have to do this.

I thought, in the weeks afterwards, when my arms ached and my breasts were bursting and my house was filled with the heaviest, most deafening silence, of mother animals I had seen on television. The mother animals who clung to their dead infants. Stood by them. Refused to leave them. I could recall that once I had thought they were of too little brain to understand that their young were no longer living. I now know that I was of too little brain to understand what those mothers were feeling. I, too, wanted to hold my dead baby forever, perhaps had I not had the societal fear of death woven so deeply into my soul I would have tucked her under my coat and taken her from the hospital, taken her home where she belonged to be with me in her own house for a day or two before the inevitable came.

To sleep with her, to dress her in the clothes that were folded in her drawers, to share her with the family and friends that I was too numb-struck to share her with on the day of her birth.
So instead, I let her go.

The hardest thing I will ever do.

 from Happy-Sad Mama 2008

Monday, January 14, 2008

 

 

More than ten years along...

Some thoughts from Carol... 

Several years ago, I was chatting after a fourth Wednesday support group meeting with a mother whose loss had occurred several months prior. It was a warm evening, with a sweet smelling spring breeze and a clear sky full of stars. The meeting had been full of heavy moments, but rather than producing a feeling of sadness upon leaving we felt lightened. Being surrounded by the familiarity of loss can be so comforting, when we're used to being the only person in the room who knows that this feels like. This wise, tender mom, who was herself still in the trenches, regarded me and asked, "Who supports you, Carol? Do you have people who are further down the road, like you are?" I looked at her with amazement, feeling honored and blessed that in her most tender moment, as raw as the days still were for her, she had the ability to wonder about me. I answered her honestly. "There is no one," I said, but I gain so much from all of you. And it's true. But I've come back to this again and again: what is it like to be so far away from my daughter's birth and death? Where does she live in my heart, and in my world, right now? These are questions I often ponder on my own, but every now and then I read something that helps to ground me in the place where I now stand. 

For the past few days, my mind has wandered continually to an article I read on Huffington Post entitled, "The Other Quiet Mom". The author, Nancy Davis Johnson, beautifully captures what grief has felt like over a decade down the road for me. Charlotte appears to me every day, with the sound of my own breath, with a familiar scent, with the sound of a child's laughter. She is all around me in the life I've built since she came and went. She is the foundation of the family I have built since she died. She was the child who made me a mother, yet I only mother other children in her wake: four beautiful souls I am so blessed to have. Yet, every day, there are moments where I am "the quiet mom". The moments where I have to calculate how to answer someone's question, where I have to consider whether or not to weigh my opinion. As my children grow older I feel connections to their world and disconnections, as I am still forever changed by Charlotte's passing. 

I am a "regular" mom now, no longer defined by my grief. There was a long period of time-- perhaps five, or six, or even seven years for which I truly believed that my grief would always define me. It doesn't anymore, but I still feel how it affects me. Grief isn't a living creature inside me anymore. Instead, it's just left footprints, and scars. I can feel how it has changed me as a person. I can remember its intensity, its ferocity, its anger. I can remember the nights where I wanted to throw open the front door and run away from this life, but I don't feel that desperation anymore. I can live in a settled place, understanding that while my life unfolded in a way I would never have chosen, I have only the future ahead. I am the "quiet" mom at times, but behind that veil, I feel blessed by the ways in which I've been forced to consider the exquisite value of my living children's lives. I may not always feel like the other moms across the table, because I am grateful for my child's very life in a way that thankfully most of them cannot understand.