Beacons

Just about a year ago, I stumbled out of my house on a cold, dark night and drove ten minutes down the road to the hospital where Henry was born. I wended my way through the halls, took a deep breath, and walked into a conference room for a meeting of Empty Arms, the local SHARE group.

Henry had been gone just over a month. I was so numb yet raw, so lost. How did I get here? It didn’t feel real—his death and sometimes even his life.

I missed my baby. Losing him devastated me shook the core of my world. I used to live in a world where babies only died in far away places, in poor places, on TV, to other people. I don’t like living in a world where babies dying is a part of a terrible daily reality, my reality.

And I didn’t know who I was any more. What does it mean to be a mother when you have no child to care for? What was I going to do with all the baby stuff? with my time? with my love? How did I hold on to Henry when I had already had to let him go, told him it was okay, released his spirit as I held onto his body? And how would he stay part of our family if we welcomed new children into it, children who couldn’t remember him because they had never known him?

I met Carol who showed me how very real her daughter Charlotte is, how very much a part of her life and her family. She was five years down the road, five years ahead of me in this journey. And she gave me great hope and a sense of possibility. Months later I found her blog, which made me cry, but which again touched my confusion and fear and sadness.

She is one of my beacons, the people ahead of me on this journey who have helped me along the way. She has continued to inspire me, help me, and now rejoice with me. I am so thankful to have found her.

Bright eyes

It is just over the past few days that Kathleen has started to really wake up and take in the world. She looks around with her big, bright eyes that are just beginning to lighten from their dark baby blue, unclear yet as to what color they will end up.

She has loves to stare at herself in the mirror when we change her. She has begun to take notice of the mobile above her swing. She delights and is distracted by the light from the window behind me when she nurses. And she looks at me, watches me, studies me.

Oh, little one, there are so many things I can't wait to show you, but right now I am content to just watch you back and take you in.

The People We Meet

This sucks.

The comment came from the woman next to me. We were both balancing a sandwich and an over-sized cookie. The lunch itself wasn't bad, but she had summed up the situation that brought us to this luncheon. I looked at her name tag—8 South, just like me. She had been walking the halls of the hospital longer than I had, her baby a bit younger than Henry.

Tricia and Riley went home before we did. I was so happy for her, but I missed her terribly. We had plans for play dates with oxygen and feeding pumps and copious amounts of Purell. From that lunch on, we had helped each other through the hell of hospital living, and we planned to help each other through having a cardiac kid at home too.

***

Sara, it's Tricia. I'm so sorry.

She called me at home after Henry died to express her sympathy and to tell me she wanted to come to the funeral, to make sure it was okay. "I'll understand if you don't want to be friends anymore." She gave me an out because she knew it would be hard, so hard, for me to see her daughter, whose life had hung in the balance just like Henry's, who was supposed to be Henry's playmate as we took turns trekking across the state to get together. And I knew it would be hard, but necessary. I had just lost my baby. I really didn't want to lose a friend too.

***

She's amazing.

Tricia came out yesterday to meet Kathleen for the first time. She hugged me when she walked in the house and then washed her hands. We are well trained in warding off germs. She marveled at how tiny Kathleen is, though I've been thinking how big she is getting. She held her for a long time. She didn't get to hold her own tiny baby very much. By the time Riley was Kathleen's age, she had her first surgery. She held Kathleen and we both remembered another time, a nightmare, a horror movie.

It was a terrible time, but through it we found each other. And I'm so glad we did. And I'm so glad that she reached out to me and I didn't push her away.

Who have you met on your loss journey that you are thankful for?

Baby Group Revisited

I took Kathleen to the baby group at the hospital yesterday, to a small room where new moms sit on the floor, their babies laid out before them on blankets, tucked into slings, resting in car seats, or snuggled close to nurse. Babies, lots of them, ages four weeks to four months.

"Is this your first time?" one of the other moms asked me. I paused, for it was my first time with Kathleen, but I had been here before. I brought Henry, several times. I remember the first time I got there with him. Two moms I knew and had shared my pregnancy with were already inside. I juggled car seat, diaper bag, oxygen tank, and monitor, to plunk myself down with them.

Week after week, we went. I went to meet other moms, and even though it was hard to get out sometimes or to find time between Henry's appointments, I wanted to know people to get together with for coffee and play dates, knowing there would be a time without oxygen, a time without three or more appointments a week, a time when I just felt like a normal mom.

Most of the time I went there I didn't feel like a normal mom, though. People talked about struggles to get their baby to sleep; I was waking Henry up periodically throughout the night to make sure he got enough feeds in. Others had crying babies at night; I had an oxygen monitor that wouldn't stop beeping even though my baby looked fine. Moms were worried about upcoming shots; that wasn't even on my radar so focused was I on Henry's impending surgery. Still, I got what I came for. I met other moms, and though I didn't get to many of them well, some followed Henry's story online as he was rehospitalized; some sent cards and came to the funeral; they chipped in for a gift certificate to my yoga studio after Henry died, which turned out to be a most healing gift. But I left most of that behind, unsure how to continue those relationships without a baby in my arms.

So yesterday, I started again, ready to meet a new group of moms with a baby my baby's age. I wondered if it would be hard to be there, simply because I had gone with Henry. Would I cry? Would Maria, the leader, recognize me? It wasn't as hard as I thought. I did move quickly into the room and settle myself before I could be paralyzed with worry. I didn't cry until later that night, and Maria did recognize me but didn't quite place me. "You're back." I nodded. "And how old is your first child now?"

I took a deep breath. I had been afraid she wouldn't remember me or would and wouldn't know about Henry. "He died in December 2007." And then she did know me. And she did know about Henry. "Oh, I went to Henry's funeral. I'm sorry. I just couldn't your face to your name." And it was okay, because she did remember Henry and she talked about him and she encouraged me to share as much or as little of my experience as I wanted in the group.

I sat through the group, adding a little to the conversation, nursing Kathleen, giving her a bottle, smiling at her in her still somewhat rare awake, alert, and content state. During the open chat time at the end of the meeting, I talked to the mom next to me about cloth diaper covers and the size of our babies, sleep schedules. I wanted to say, "I've done this before. It was very different, but I've done this before." But I didn't want to answer the follow up questions. I wanted to talk about Henry, but I didn't want the moment that would come after I said, "My first baby died when he was six months old." I'm still figuring out how to talk about Henry in the context of talking about my mothering experience.

Later that night at home, I cried, suddenly and hard, for Henry. Going there had brought him close to the surface without me realizing it. I remembered, not the hospital which so often dominates my thoughts, but the early days with him, the days before his surgery when I was scared but so hopeful, so full of anticipation—and one triumphant Thursday at the end of August when we went to the group, post-surgery, oxygen free, and I felt like we had arrived, we had made it. Good memories, but the missing hit me hard.

Sleepless

Kathleen has been pretty good at sleeping at night. She still wakes up a couple of time to eat, but she tends to go longer stretches at night. Usually she wakes up, we change her, I nurse her, and Brian or I give her a bottle. Then we settle her and put her back in the bassinet or she doesn't want to be put down and one of us lies down with her on our chest. It's not a bad system. I can't complain.

Last night, she slept for a few hours and woke up around 2 a.m. She nursed; she had her bottle; and she looked at me with her big eyes, wide awake. She wasn't fussy, though her mouth kept going. I tried feeding her more. Still wide awake, and her mouth was still going. She'd close her eyes and then pop them back open. I let her suck and suck and suck. We did another bottle at 4. She had a series of loud, satisfying burps, and I put her down a little after 5.

As I sat there in the semi-dark with her, I remembered my sleepless nights this time last year, my grief so raw. I was afraid to go to bed then. As my mind and body started to settle down, any protective measures I had put up to get me through the day came down and the pain that seemed intolerable intensified. I'd sob briefly hugging Henry's blanket and eventually sleep. Every night I dreaded bedtime and I tried to avoid it. I'd sit up for hours doing crossword puzzles or endlessly searching online for something to comfort or help me through. I'd go to bed in the wee hours and sleep late.

I remember talking to a friend in March. It was almost 11 a.m., and I had just gotten up. "Lucky," she said. She had a new baby at home and had been up with him. Really? I thought. Lucky? Do you want my kind of luck? I wish I had a reason to get out of bed before 11. I wish I was up all night because somebody needed me.

I knew there might be a day when I had a new baby, when I had no sleep, and all I could think of was lying down and closing my eyes, but at that moment, I would have given anything to be up all night with a little one.

Now, with a new baby home, I do appreciate sleep. But while there are times I'm exhausted, I know it could be worse. Last night, I longed to get back into bed. I yearned to lie down and get some rest. But there was a warm little body in my lap. For a time there were big eyes staring up at my, there were soft tugs at my breast, and then there was a snuggly, sleepy little girl, eyes closed, face peaceful, so worth staying up for. I'm tired this morning, but I really can't complain. No, I can't complain at all.

About Henry: Two True Stories

S/he was perfect, just not breathing. These words always catch my attention when I'm reading other people's stories. I always draw up short, realizing that I don't say that about Henry. I don't say he was perfect, instead I lead off with what was wrong.

Maybe it is the need to respond to the space left after you say, "My baby died," to answer the question that statement raises, or my own need to tell about what I've been through, or my inability to capture Henry's spirit in mere words. I tend to rely on an outline of his story, the key events in a neat package for those times when small talk questions lead to the uncomfortable ground of a dead baby.

The Story I Tell
Henry was diagnosed before birth with a small hole in heart (a VSD). We thought it would close up on it's own over time. We learned shortly after he was born that he had Down syndrome and that he had 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 and barely got to see him. I couldn't get to him for two days. 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. We went 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. We learned that he had an exceptionally thick cardiac septum, pulmonary hypertension, and another pulmonary issue. He almost died in October from an infection, but pulled through. In December, he was finally discharged on oxygen and a daunting med schedule. He looked good and 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.

What I Wish I Would Say
When I first held Henry, I felt utterly right and I relaxed for the first time since the doctor first came into my recovery room with a grave face.

In the early months of Henry’s life I would lie in the early morning resting with him on my chest. It was perhaps the most profound peace I have ever felt.

Henry had a smile that lit up his entire body. So many times that smiled rescued me from fear, exhaustion, and despair.

Henry amazed me: he kept smiling, kept doing new things, remained strong, despite so many days sedated. He was so intent, so determined the way he focused on faces of everyone who held him, the way he worked at getting his hand in his mouth, the way he kicked at his chime toy.

I love Henry with a depth and an intensity I could not imagine before he came—and I miss him with an equal depth and intensity.

The View from Where I Sit

I've been sitting in this chair a lot lately, the glider rocker that was intended for the nursery. We moved it to the living room after we brought Henry home on oxygen and were afraid to bring him upstairs for fear one of us would trip on the tubing. I fed him and rocked him and sang to him in that chair during a sweaty summer of 2007. Now I sit in this chair to nurse Kathleen and rock her and sing her her own song in this chilly winter.

Last January, I spent hours in this chair, clutching a yellow blanket. My grandmother knit the blanket for Henry, and when we headed to the hospital for the last time, I grabbed it. I did not want to, could not admit that Henry might die, but I grabbed it, knowing without admitting why I was bringing it. But when he died, when the monitors stopped beeping and they unhooked all the machines, it was that yellow blanket we wrapped him in, that yellow blanket he was in as family took last turns holding him. I clung to that blanket for a year, but in January last year, I was clinging hard. Last January, I sat with tear swollen eyes, staring dully at the pictures of Henry all around. I had a baby and he's gone.

I sat in that chair in a home that felt strange and alien. I had been gone three months with Henry in the hospital, not even home two full days before he got sick again. I live here. I had a baby and he's gone. It didn't seem real. I had mixed feelings about going to his grave. There were times I felt compelled to go, but I wasn't quite sure what to do when I was there. But at home, I sat in the chair, the chair where I had held him. Somehow it seemed like a better place to visit him.

This January, I sit in this chair and hold my baby girl. I look at her with wonder that she is here, that she is okay. And from my chair, I still look at the pictures of Henry, my eyes bleary with sleeplessness rather than swollen with tears, though the tears still come. I had a a baby and he's gone. It still doesn't seem real. I still miss him, still long to hold him. But I'm thankful that this January I'm holding more than a blanket. Kathleen, I love you so much, and I'm so glad you are here.

One Month

Kathleen is one month old today. I've spent the last year counting days without someone. It is nice to mark a month of counting days with someone.

One month and a few hours ago, I heard her cry for the first time, a strong, lusty, insistent wail, and I began weeping. She was here. She was okay.

With those first cries, the first assurances that she was okay, I let go of the anxiety that had been building throughout my pregnancy. Building, building, building. I was so on edge. I was afraid she would have a heart defect like Henry, afraid she would have another major health issue that we had not looked for or looked for but not seen. I was afraid she would need oxygen, be sent to the NICU, come home with equipment, or not come home at all. I was afraid of all the things that I knew could go wrong because they had for us—ambulance rides, codes, surgery, infection—and all the things I now knew could go wrong because I had met other babylost mamas and heard their stories, absorbed their losses.

As we got closer to her birth, I inexplicably gained a some confidence that she would be born alive and healthy, but I became terrified of her getting sick soon after birth. Why was I having a baby in cold and flu season? How would we negotiate the holidays and all the people who were sure to want to see her?

We've been careful. I do make people wash hands before touching her. I have limited visitors some, especially kids. But hearing her cry eased my anxiety. Yes, I'd love to keep her from getting a cold or the ugly stomach bug that's been going around, but I am no longer paralyzed by the thought. I realized that the anxiety had dissipated while we were still in the hospital.

I didn't realize until later that I had let go of an even deeper seated fear—or perhaps that it had let go of me. Since May 2007, when we learned that Henry's small to moderate VSD was in fact a larger, more serious AV canal defect that would require surgery, I have lived with fear. Fear about his health, fear of his surgery, fear when he was rehospitalized for his health, that we would never go home, only briefly that he would die. That fear should have died when he did, but somehow it was buried under my grief and never really left me. And then I got pregnant again and the fear bubbled up again. With Kathleen's birth, it seems to have left. I didn't realize the depth of that fear, the strength of it, until it was gone. It is a relief.

So one month—one month with Kathleen, one month without fear.

Glow in the Woods' 7 x 7

Glow in the Woods recently posted it's 7x7 questions for January. Here are my responses:

1 | Welcome to 2009. What have you left behind in the year just past? What do you hope to find in the year to come?
I left behind year one of grieving, the firsts of everything without Henry.

I think I’ve left behind a lot of fear. I hope to find more moments of peace and more moments of good memories rather than the fearful, traumatic ones that seemed to have surfaced so much last year.

2 | We've just come through the season in which our culture touts cheer and peace and family togetherness rather relentlessly. How did your child's death impact your experience of the "holiday" season, personally or culturally?
I definitely felt the hole in our family. This year we marked two missing faces: Henry’s and my sister-in-law’s. This Christmas marks our second without Henry, though it felt like the first. Last year he had been gone only eigh days, buried only three. But this year also marks a different kind of first: our first with our daughter, born two weeks before the holiday.

3 | If you celebrate in any way through December, are there ways you include or acknowledge your lost baby/babies?
This year I could not deal with a proper Christmas tree, but I decorated a small, table top tree with hearts and cardinals (my symbols for my son) and a tiny angel, and I lit candles for him throughout the season. I made an ornament with his name on it, to match the one I made for my daughter, to be hung when we do have a tree again. I brought a heart-shaped wreath to his grave on Christmas day. It felt insufficient, but I needed to do something, to mark his place somehow.

4 | Through the year are there any holidays, seasons, or parts of what were once cherished rituals that have changed for you because of your child's death?
I wonder if I will ever find December to be a season of peace and joy again. It seems like a month that will always be complicated, marked as it is by both birth and death. Birthday, death anniversary, Christmas . . . right now it just feels exhausting.

5 | Do you do anything to remember your baby/babies' birth and/or death day? Or will you?
We planted two trees for Henry’s first birthday: one a hawthorn that family gave us planted on his actual birthday and one a peach tree that I had planned to be his first birthday gift from us. We marked the day with our families, eating cake and bring balloons to the cemetery, one for each of the cousins and one released for Henry. I’m not sure how we will handle it in the future.

6 | Is there anything about the winter season (for those of us in the Northern Hemisphere right now) that lifts your spirits? Is there anything that especially brings them down?
I like the coziness and camaraderie of storms. I love the beauty of fresh snow. The flash of a red cardinal in a bleak landscape reminds me of Henry’s smile. But early darkness and being in all the time sometimes lead to a sense of isolation.

7 | During your hardest times, how have you found your way forward?
I just keep taking it day by day, step by step, and remind myself that grief is not a straight, linear path.

Addition and Subtraction

We just got our annual street listing form in the mail from the town clerk. It lists me and my husband, noting our names, sex, date of birth, occupation, political party. It says that we have no dogs or cats, though we'd like to have a dog again someday.

It is a fairly innocuous form. Even column 9 seems harmless, narrow as it is, the words Moved/Deceased, cramped and vertical to fit. And it was that column that killed me this time last year.

Deceased.

I drew a line through Henry's name. I could not have had the chance to write his name in, for he was born after the form came in 2007. He must have been added once his birth certificate was registered at the town hall for there he was: Brian, Sara, Henry. I drew a line through his name and wrote a D in that column.

Deceased.

He was only 6 months old. He had been "deceased" for less than a month. I could barely breathe as I corrected the form.

So the form came today. This time it says only Brian and Sara. I need to add our daughter, born last month. Adding her name is a joyful act, a natural one, completely different from the elimination of life I had to mark last year. The form will go from showing two people to showing three. It is much better than moving from three people to two. Still it doesn't add up right.

There are three people living in our house, but we are a family of four.