Right Where I Am 2013: Five years, five months, fifteen days

Past years in this project, I was on the verge of Henry's birthday, which meant that no matter how good I had been doing, I was wound tight, waiting. This year, though, his birthday is just behind us. He would have been six. I'm almost five and a half months away from last holding him.

Like last year, he feels far away. Even when my girls talk about him, about how we love him, how they wish he could be here, and they do talk about him often, he feels far away. That he was here, sometimes feels like a dream. Immediately after he died, it all felt unreal, that he had died, but also that he had lived, and the latter part of that bothered me to no end. If he was not real to me, what about the rest of the world who had not felt him kicking inside, had not rested feeling their body calming with his as he slept on their chest, had not felt the flash of his smile. Now, it is a gentler distance mostly.

It is still surreal to me if I let myself think about it. I had a baby boy and he is not here.

But day by day, I get my big girl off to school and hug her when we both get home for lunch. I snuggle in the morning with my little girl until I can convince her to come make coffee with me. I tell stories and sing songs at bedtime. I notice how big they are getting, and only rarely do I compare to where Henry might be.

Right now, I notice the tree we bought as a gift for his first birthday is heavily laden with peaches. Right now, the red-flowered hawthorne we planted on his first birthday, a gift from my husband's cousins, is starting to fade, but was absolutely brilliant this year. Right now the garden that I tend for him is full of color, early, purple phlox that is almost luminescent at dusk, tiny blue starry flowers that I can't name, brilliant red verbena and the red gerbera daisy I planted this year on his birthday, a hint of pink covered in ants that makes me think of Mary Oliver where my peonies are about to bloom for the first time.

Right now, I'm exhausted but feeling strong. Finally. I am tired, but not worn out. There is something left in me to give. I think in possibility again. I start projects like overhauling parts of my garden that haven't been touched in years, like writing something more than blog posts, and in that writing starting to delve back into memories and sometimes finding that things are closer to the surface than I realized, and sometimes realizing there are still little pockets I have not really explored since he died (though sometimes it seems I have explored every inch from every angle).

Right now I am grateful for the neighbor who knew me when Henry was born and knew Henry for sitting with me on Henry's birthday with a bottle of wine and the dinner I threw together. Right now I'm grateful for the neighbor who didn't know me when Henry was born and never knew him for asking how I was doing in the days before his birthday (not the first time she has given me that space to talk about him).

Right now I'm listening to the summer night sounds coming through the window and the silence from upstairs where my girls finally fell asleep. Right now I'm relieved that I can once again enjoy the quiet.

Right now, I'm grateful to Angie for hosting Right Where I Am again. Because five years and some plus, I still need to pause and reflect.

Right where I was 2012
Right where I was 2011

Six

Everyone slept in today. Elizabeth stirred around 6 and then settled back and so did I. I woke with a start at 7:30 and hurried up to get started with the morning. I felt beat up. I felt old. Everything tired and dragging.

Elizabeth Mitchell in the car.
Egg sandwich for breakfast.
Gardening in the rain.
Cemetery and chocolate cupcakes.
Six.
Six.

This birthday snuck up on me. I knew it was coming. But I have a deadline at the end of the week and I've been finagling my schedule around this day that I take off even if I don't do anything. Yesterday, I kept needing the date for a check I was writing and a tracking sheet for my project, and I kept having to check, even though it was the day before this date I can't forget.

I have been feeling stronger, but today I just feel beat up. Six years ago right now, I was in a hospital bed. Henry had, I believe already been transferred to the other hospital. Our dreams had already cracked but we had no idea what the road looked like ahead, how those cracks would keep spreading and everything would finally shatter. Six years ago today, Henry had been born, but in some ways, I was still waiting to meet my baby.

Six.

Brian went to our friends' weekly potluck last night. I haven't gone in months because it's too late for Kathleen on a school night. They celebrated a six-year-old's birthday, the little boy born just days before Henry, the one I ran into at the hospital, his mom back for a lactation consult while I was waiting for to get released to see my own baby. I'm glad I didn't have to see six in action last night.

Six.

I should have been bringing those cupcakes to his kindergarten class today. Kathleen has been peppering me every night recently with ideas for her birthday party. I have been impatient with them, coming as they do in a flood at bed time. "Just go to sleep. Your birthday is far away. We have lots of time to plan." Maybe I've been impatient too because I should have been planning a party now, cake and games and favors. Would he have liked dinosaurs or trains or animals or sports? Would he have wanted a pirate party or a farm theme? Pin the tail or pinata?

We had chocolate cupcakes with chocolate frosting and sprinkles at Kathleen's request. She picked a gorgeous red gerbera daisy to put in his garden and helped me plant it today. My babies, two, four, six.

Six

Layers

A few months after Henry died, Brian and I drove to Boston every other week  for a grief group. One of the images that stuck with was the layers of the onion. We kept peeling away those layers of grief—all the little letting goes, the fears, the traumas one after another after another, all the hurts that piled up afterward—layer after layer after layer I peeled it away. And like an onion, all those layers all made me cry.

That image came back to me today at church. We were sitting up front for a change and I kept looking at the baptismal font right in front of us. Before Kathleen was born, I would well up just looking at it, remembering that he had been here and now he's not. Today, I remembered Henry's baptism. And Kathleen's. And Elizabeth's. I did not cry. Time healing old wounds? New skin grown over the sensitive spot in my heart? Perhaps. But today, what it felt like was that I have been adding layers to our story instead of just peeling them away, new layers that soften the jagged edges.

His birthday is Wednesday, and I may find that I don't have as many layers as I think I do or that they all fall away too easily. I may find myself crying over my onion again. Or I may grow another layer on my story.

May

Six years ago I was getting ready for this little being I didn't yet know as Henry to be born. I knew there was a small hole in his heart, and yet I wasn't freaking out. Otherwise, all was well. I felt great. The house was chaotic as Brian tried to finish up the painting projects we had begun before I got pregnant, but the glider was up in his room, a few clothes were washed and ready.

I was busy digging in my garden, trying to get things planted. I didn't expect to have much time to work in the garden, but lettuce and tomatoes would do their own thing if I could get them in. I think of this in flashes, remembering squatting, moving around my belly as I worked. I remember my simple expectation as I get my garden ready this year. And here's the thing: I still believe.

I still believe that my work will pay off even though unforeseen circumstances could pull me away from home come July or August or September as the bounty really begins to flow; we could get late blight on the tomatoes again this year or drought could shrivel up my plants or a late freeze could kill them before they begin to thrive. Squirrels will undoubtedly get the peaches from Henry's tree long before they are ripe. I don't think about what could go wrong when I'm out there digging and moving compost and spreading ash. I don't worry the what ifs while I sprinkle seeds or wield the hose while Kathleen flaps about the yard with the rhododendron branches I pruned recently. I dream. I look at where I might shift and expand. I try to figure out where to put a new strawberry patch next year and where to finally start asparagus. I contemplate fruit trees and blueberry bushes and how they fit in with dog runs and clothes lines and open space for play.

I see the magic in the rhubarb that is already humongous and the chives that greened up before anything else and the cilantro that seeded itself for me and is ready to use now. I see the wonder as little bits of green poke up where weeks, days I ago I planted seed. I, who am usually so linear and organized and planful, can't seem to finish prepping a particular section because there is so much work to be done and I see so much potential. I have new energy. It's been growing in me, and maybe I've talked about it before. I am refilling after the complete and utter wring out of early grief. I am refilling after the needs of the early days of mothering my girls. I am refilling by claiming a little time and space for me to run and write and dig in the dirt.

I am not thinking ahead to the rest of May, to Mother's Day and Henry's birthday, except to think about what I will get for his garden this year. His birthday isn't easy, even separated from the day he died by several months, but somehow, part of what I relive right now is the anticipation, of him and a garden of vegetables, this time of joyful waiting and wonder.

Tell me about him

I had coffee today with two preschool mom friends.

A. gave me a big hug upon arrival and then twice while we were there. I'll take them. I'll always take a heartfelt hug.

Then B. said "I wish I could do something, but . . ." and she paused knowing there was nothing really to do. "Can you tell me about him?" And I almost cried and half smiled and I told her about Henry's smile, how the picture I posted on FB shows just a hint of it, how we captured it only once in all it's bright openness on the day of his surgery, how when Brian, narrating for the camera said that we'd soon get rid of the oxygen, Henry's whole face lit up and burst into that brilliant smile that carried me so many days, the one that still makes me smile.

"Can you tell me about him?" Nobody asks that. People ask what happened or say that must have been hard, which launches me into what happened and how hard it all was. He was only 6 1/2 months old. He was sedated during an awful lot of that time, so sometimes I'm not sure I have much to tell about him, and I still, five years later, find myself sifting through the rubble to find the pieces of him I lost as our world kept shifting and falling. But today, I collected just a bit and shared it with a friend who never got to meet him but wished she did.

Five Years

Last Thursday, I sat with a friend and sewed felt ladybug Christmas ornaments for my girls while she needle felted and we talked and settled in silences and our coffee and chai grew cold. I told her I felt I was finally replenishing my reserves, that I was able to do things, little things like make a felt Christmas ornament for my girls, that I had wanted to do but just couldn't manage these past five years. I am stronger, better, not all better, but, perhaps living through this month rather than just surviving it. I'm able to look at, seek out the light, this year, even as I sit in the darkness.
Friday morning the girls and I ate pumpkin bread and played with friends. And then the news started coming in. Horror, sadness, fear, disbelief. And a deep welling of grief and sympathy for these parents who dropped their kids off from school and will never pick them up. These parents who will stand hollow beside their child's grave. I am stronger, better, but still in touching distance to that raw, early grief. I feel it—the searing-torn-asunder pain and numbness together, the wild-empty eyes, the hows and the whys.

I have purposefully limited my news consumption, but still I keep thinking of the lives cut so very short and of the parents of these little ones. I keep thinking of the Christmas presents hidden in closets or arriving by mail and the family Christmas cards with smiling pictures waiting to be sent. I keep thinking of the funerals that will happen in the coming week. I keep thinking of next December and how cruel the joy of the season will feel. I think of next December and the December after that and after that and how slow the light is to come back and how it is never the same.

I think of all this, and I do what so many parents have done the last few days and I hug my girls close. Do I do it more because of the killings? Do I do it more because tomorrow is five years? Do I do it because in this month when I mourn a loss I also celebrate two lives? Do I always do it this much? I don't know, but I snuggled up under blankets and played a bleary eyed peek-a-boo with my freshly minted two year old in the still dark morning. I helped my just-turned-four year old make gingerbread cookies and let her pile on the frosting. We read stories. We walked around the neighborhood. We lit a candle with dinner and ate birthday cupcakes. I cannot make sense, but I hold as much love and hope and joy as I can in the face of inside and outside grief, a tiny star in the darkness. And I wait to see what my own grief brings me as we approach the day.

Tomorrow it will be five years. Five years since Henry was last alive. Five years since I sang out his soul. Five years since I let go and walked out of the room leaving his body behind. Five years and I'm still surprised that this is my life. I look at the pictures on my mantle of my boy smiling and sleeping and sucking his thumb. I had a baby boy and he died. I can't make sense of it, don't want meaning ascribed to it, but I read these lines from Mary Oliver  in a book I bought in June that has been sitting on the shelf waiting for me to find it in December.

"If I was the song that entered your heart
then I was the music of your heart, that you wanted and needed,
. . . 
And this was my true task, to be the 
music of the body. Do you understand? for truly the body needs 
a song, a spirit, a soul. And no less, to make this work, 
the soul has need of a body, 
and I am both of the earth and I am of the inexplicable 
beauty of heaven
where I fly so easily, so welcome, yes, 
and this is why I have been sent, to teach this to your heart."
       —from "Red Bird Explains Himself"


I am so thankful for the song that entered my heart back in 2007 and for all my heart as learned from him. Ah, but I wish I could have learned that lesson another way.
Loving, missing Henry, five years later.



 

Lights: Early December

Snow
December 1, we woke to snow. A mere dusting that covered only the pavement and our dirt driveway, the grass was still its early winter mix of slumped green and blah beige. I might no have even bothered to note the snow if not for my girls who crowed, "It snowed!" upon looking out the window. They delighted in putting boots on over their jammies to walk down the driveway to feed our neighbor's cats, leaving smudged footprints behind them.

Lights
Out for a late afternoon walk, in the deepening dusk of winter 4 PM, we crested the little hill down the street. "Lights!" my girls cried seeing the reindeer and tree that they had walked by the past couple of weeks lit up for the first time.

Love Notes
I have a little tree that I put up for Henry. We bought it in December 2007 when we thought we might be in the hospital for Christmas. Family members were given little wooden hearts to decorate and send to us. My aunt was horrified hers were already in the mail when Henry died. I put the tree up with those hearts and some cardinals. Until last year, it was the only tree I had. Now, we have the big tree and Henry's tree too. Kathleen, out of the blue, decided she had to make something for Henry's tree, so she cut some strips of paper and wrote "Dear Henry, I love you and stuff, Kathleen" There are many, many of these bits of paper, and I look sometimes and think "What a mess," and other times "What love."

Resurgence
This year I am tackling the project of rehabbing my old dollhouse as a gift for Kathleen. I accept that it will not be perfect or finished really (I got it as a kit 30 some years ago and never put the trim or doors on), but she won't really notice that. Last year, I really wanted to do this for her for Christmas, but I hit my emotional exhaustion wall, and, as I have learned so slowly to do, I let it go. This year, I am finally able to tackle some of the projects that have languished, despite a true desire to do them.

Family Tree
Kathleen and I put up the Christmas tree today. The lower branches are heavily laden and luckily I have a large supply of felt ornaments as opposed to, say, antique glass. I told her the stories of the ornaments—the ones given to her when she was born, the ones I made when I was little, the mountain peak marker and wheelbarrow I gave to Brian, the hearts I made for each of them. And tucked in among those are little red birds ones I've bought each year on the day after Thanksgiving, a paper collage from Amy, a simple stuffed cloth bird from the ornament swap last year, a felted ball from Jenni, a painted glass ball from my aunt. And after Kathleen went to bed, I remembered to open the package that came in the mail (a bit of light and excitement any time) and found my new swap ornament, a cookie cutter with Henry's name on heart with a feather from a desert cardinal hanging. He has his own tree, but he's here with us too.

Part of our story

Earlier this week, Rachel at 6512 and growing, writing  about the premature birth of her son and how her awareness of prematurity has changed over the last eight years, said, "Now it feels like part of our story, but not the main plot."

I've been thinking about this line since, thinking about how Henry's story is part of my story, how it isn't the main plot anymore. I think the tough part is that his story doesn't go on, and I worry about that plot line fading out all together. I find again and again that I need to let go of the fear of him being lost to memory. I am reminded again and again that it is okay to let go, that he is remembered, that he is part my story.

One friend recently asked if we would have a Christmas tree this year. I met her after Henry died, while I was pregnant with Elizabeth, and two years ago, I told her that December is really hard for me, and she remembers this and asks me in different ways, how the month looks for me this year. This same friend dropped off a plant to put in Henry's garden for his birthday.

And my dear friend who knew Henry, who did more than she may know in helping me survive the hospital, just ended a message by saying she was thinking of me and Henry, as she always does come December. This friend has a picture of Henry on a shelf at her house, and when people ask her about it, she tells them he's a friend.

I am a cautious person. I reel out my line, loosen my grasp slowly. Will I have as much trouble letting go of my girls as they are ready more and more to go into the world?

I've been thinking a lot about Henry's story, my story, our story lately. I've been writing more lately (just not here), and I'm working with this story, but I'm not sure which story I'm telling. Is it the story of his life where roller coaster of his health are a major plot, the story that ends with me standing by a hospital door in the dark, arms empty, to go home to a quiet house? Is it the story of the journey that ending started? Is it the story of becoming this person I am now having reassembled my pieces (mostly) these near five years later? I don't know, but I'm going back into the darkness and the fear and the confusion, little by little, and finding it is not so deep below the surface sometimes, though the crust is stronger. I'm looking in these dark corners, as I always do, for the bits of light, the bits of love, the bits of Henry hidden in the shadows of oxygen tanks and ambulance rides, and codes.

It's almost December, the month when I celebrate all three of the lives I brought into this world. Two birthdays, one remembrance all packed tight and barreling into Christmas. I'm approaching December tentatively this year. I wonder if I'm just limping now out of memory, if perhaps I could step more surefootedly through the coming month. I'm just going to take little steps and see.

Peaches on the Literary Mama Blog

Around here, the strawberries are starting to turn red. In some places they are coming in thick already, and there were pint boxes of them in the farmer's markets yesterday. In my garden, we've picked a handful. Tuesday, my canning friend's strawberries were wet and yellow. The sun today should make a difference, though. I have a jam-packed weekend, but might have to pack some jamming in there. Although there are a few earlier season projects (violet syrup, pickled asparagus, maybe rhubarb jam), strawberries signal the true kickoff the canning season for me. 

If strawberries are first, peaches are the most anticipated fruit of the summer. They arrive in the sticky, hot days of August and stretch into September. I wrote about canning peaches and being Henry's mom as part of a contest held by the lovely Kate Hopper to launch her book Use Your Words. You can read my piece the Literary Mama blog.

Five and the Best Laid Plans

My plan for the day:
family breakfast of fried egg sandwiches
listen to You Are My Little Bird in the morning
plant flowers at his grave
work in Henry's garden today
have cupcakes with friends

This morning Brian stayed in bed after being up late with a feverish Elizabeth. I was leaving early to get Elizabeth to the walk-in hours at the doctors. No family breakfast.

I had a little time to spare, so I went to put the music on and the CD player closed and then opened and wouldn't close again. I fiddled with it for a bit, getting frustrated. No music in the morning.

And then I started to laugh. I don't know why I would think anything would go as planned on this day. Five years ago he was born, a day earlier than planned, and nothing, nothing really went as planned after that.

I ate my fried egg sandwich, much like the one I ate the day he was born. I made one for Kathleen. Brian got up. I got Elizabeth in the car, and turned the music on there.

After seeing the doctor (Elizabeth seemed fine except for that fever), we all went to the cemetery together. As Brian stopped the car, in one of those coincidences or something more, "Peace Like a River" was playing, which was perfect. I often find myself not knowing what to say when we visit Henry's grave. Today I sang "Peace LIke a River' as I worked. Kathleen helped me dig a hole and water. Elizabeth tried to pull up flags. Brian blew bubbles.

Despite oppressive heat, I spent much of the day in Henry's garden, as I did last year. I loosened soil and weeded heavily and split and moved plants. I still need to add compost and transplant a few things and add a few things from some sweet friends who know that is what I do for his birthday.

We had dinner and cupcakes with our friend who asked so earnestly that first winter " 'Enry 'ome?" and his sister who had promised to help Henry on the bus his first day of school.

That's what a fifth birthday looks like here, for now. Five. My boy would be five.

This week

This is the week.
December 11–17

I knew my joy-grief was packed tightly into this month, but the alignment of the calendar brings that so into focus this year. One week to mark birth birth death.

Sunday Kathleen turns three.
Thursday Elizabeth turns one.
And Saturday Henry will have been gone four years.

We have a busy, but low key week planned.
Tomorrow evening, if we can, a train ride through the park to see the lights. A cupcake she doesn't have to share. A gift. Monday birthday dinner with neighbors. Tuesday more cake with friends. Thursday. Oh, my. I haven't planned anything special for Elizabeth's actual birthday. More cake? Something to open (her real gift will be blueberry bushes, as was Kathleen's on her first birthday, though they have yet to be planted). Poor second/third child. I was okay with not giving her a big party, but perhaps, I should do something to mark that day.

And Saturday?

All I knew was I didn't want a birthday party that day, for my girls or anyone else. It was one thing I didn't think I could handle. But we got invited to two holiday parties. We could easily have bowed out of either, but we're going to both. Part of reclaiming this month. Part of reclaiming our lives. And right now, it feels okay, good even. I need to go to the cemetery in the morning, so that we we head out in the evening and drive by his grave, I'll have been there already.

The next day, the 18th we start the Christmas cycle.
But first, this jam-packed week.
And to start that week, a birthday.

Henry's castle

Just down the street on the way to the playground is an old cemetery. We walk by it frequently and sometimes we stop, because Kathleen likes to visit the "castles." It is not a particularly ornate or ostentatious cemetery, but some of the monuments are tall and there are some family plots with steps and one with a decaying wrought iron gate.

While Kathleen climbs up and down the steps, I walk the rows, reading the aged stones:
11 months
10 months
8 days

I like that they make it easy for me. No math, no wondering if 1871–1871 lived a day or a year. I considered (though not seriously) writing 203 days on his stone or 6 months, 18 days. We didn't though.

 Our family name. His name with hearts on either side. His born and died dates. Son of Brian and Sara.

It's a rough, imperfect stone. I love the stone itself. I'm happy with the carving. I'm getting used to how it looks next to the more polished stones. I accept that it is not right over him (we were warned of that long ago when they first put him in the ground), though a little closer would have been nice. Still, he is marked. You can find him. We can plant things, place things for him. Henry's stone, his castle, was installed today.

I stopped today on our way to music class to see where they were placing him and what the stone looked like. "It looks good," I murmured. "Pretty soon it will be all set, in forever," the guy told me. Ah, yes, forever.

When I got back in the car, Kathleen was asking questions and wanting to see them work, and perhaps we could have stayed and watched the process, but. No. I couldn't. As I fielded her questions and focused on the road, hiccoughing sobs wracked through me. There it was, written in stone, the brief time he had with us. There is was, written in stone, my baby is gone. Not that I don't know, but there it was.

I met Brian there after work and we looked and commented on how it came out and I cried again in the gathering dark and the misty rain. I'm glad it's done. I will appreciate having it there when we visit. But, it's a grave stone for my baby, calling it his castle doesn't disguise that.

Love for today . . . and tomorrow

A few weeks back, the Dragon Mom article kept popping up on Facebook. I gave a heavy, knowing sigh when I read, "finally do the hardest thing of all, a thing most parents will thankfully never have to do: I will love him to the end of his life, and then I will let him go." I know what it is to do that, but I don't know what it is to live through my son's life knowing I'll have to do that. 

Instead, I had a really sick baby who was expected to live. There would be meds and follow-up appointments and perhaps more surgery or other procedures. There would be equipment to figure out and insurance and other programs to navigate. It would not be easy, but we worked under the assumption that Henry would make it. He'd get through the ups and downs and interminable hospital stay and be okay. The definition of okay kept shifting, as much as I tried to pin it down, but okay kept being the assumption. 

I loved him constantly, but I had to remind myself, more than once, to live in the day. Before Henry's surgery as we were struggling with the oxygen monitor's frequent beeping and trying to fatten him up, I kept looking ahead, counting down days, weeks, months til he could have his surgery and lose the oxygen and we could really start our life. Except the clock was already ticking. "I'm wishing away his life," I realized, long before I knew how short a life he would have. So I reset and focused on enjoying him as he was. I hated that oxygen monitor, but I loved my boy and our peaceful mornings. I focused on what he could do, not what his peers were doing, not what he couldn't do. And at the same time I set up Early Intervention to help him do all that he could do.

When Henry was in the hospital later, I at first refused to bring things from home—blankets, clothes, toys, music. Having stuff at the hospital felt like admitting we were going to be staying, and all I wanted to do was get my boy home. It took me a long time to realize that I was doing it again, wishing away his life in wanting to get out of a sucky situation. "This is his life," I reminded myself. As much as I hated living there, hated the anxiety and the separation from Brian and the machines and the lack of privacy, it was his life, and with that realization I changed. I read to him more and played music and set up routines and took pictures. I brought blankets and clothes and hung up the cards people sent us.

Even as I settled in, I told him about what we would do when we got out. I told him about the friends he would meet and the farm down the road. I told him about riding the school bus when he got bigger and working in our garden. I told him about where we lived and about the vastness of the ocean that he would finally see some day. I loved him for the day and believed the future for him. 

I had stripped down my dreams and expectations, but I believed he would come home. I believed he would one day go to school. I believed he would visit my family. I believed he would live and grow. 

We don't know how long we have with our children. We should love them right now, today. But, unless we know they have no future, parenting isn't just loving them here right now, part of parenting is believing they will grow up and helping them along the way. 

The idea of just loving them today, noble as it sounds, isn't possible long term. Or rather, loving my children today is possible, but acting solely on that isn't. I have to say no sometimes because things aren't safe or healthy. I have to say that I'm working sometimes, not because I'm attached to furthering my career, but because part of parenting is keeping a roof over my kids' heads and putting food in their bellies.

I try to find balance. I try to do my work and get food on the table and clothes clean and still say yes when Kathleen says, "Wanna play play dough?" or "Read a book" or "Let's put on crowns and take pictures." I love my kids today. It's why I set up a cozy corner under the dining room table and lay down with them to read story after story after story even as I felt my back seizing up with the sciatic problem that's plagued me since my first pregnancy. It's why we turn up the music and dance together as a family most nights before bedtime. It's why even when Kathleen doesn't get a story before bed because of all her stalling tactics in getting ready, I sing the "Kakeen" song to her, the song I made up that tells her how very loved and wanted she is. 

Yes, by all means love your child today. Take time to notice them as they are, as they grow, as they change. Take time to snuggle and sing and read stories and listen to them. But, unless you have a reason not to, believe that you will watch them grow and change. That belief is hope and love too. 

My pumpkins

When Kathleen was a baby, approaching her first Halloween, somebody sent me a baby pumpkin costume, which I promptly passed along, because I couldn't imagine having another pumpkin.

When Henry was in the hospital, I decided he would be a pumpkin. It was hard to dress him with his IVs and monitors and oxygen and other tubes, so I decided I would make something like a large bib that would cover him from neck to foot. Despite my vision and desire to make is costume (and the fact that I spent a long part of my day just sitting in his room), I couldn't quite get to it. People wanted to do thing to help, so my mom had one of her friends make the basic pumpkin (hemmed orange fleece with a ribbon to gather the top). My mom bought a pumpkin hat and I cut a face out of felt.

After a long day of waiting for Henry's fever to break, his nurse told me he could have his costume on for a bit.

So I never planned to have another pumpkin. Until Kathleen picked pumpkin.

I suggested witch; she thought cookie monster, then giraffe, then pumpkin. And there she stuck. Again and again I'd ask, and again and again she'd answer pumpkin.

I still had the orange fleece blanket, but I didn't want to tie it around her neck (fears of strangulation). So I sewed up the sides, cut a slit in the center for her head, cut the face a bit smaller and sewed it back on, and made running stitch to gather up the bottom. Instead of the hat, I attached a felt pumpkin top and stem to a headband.

I had a night of frustration when I tried to sew her costume on my machine and spent almost two hours fiddling to get it to work. The next day I gave up and sewed it all in less time than I had wasted. My sister had offered to send me a choice of pumpkin costumes, but I really wanted to make it. There are so many things like this that I've wanted to do since Henry died, but when it came time to do or make or create, I ran up against a mental block or energy drag. So making this felt like a step forward. 

So there you have it: my two pumpkins. I actually love that I reused Henry's costume for Kathleen, and in two years I will suggest to Elizabeth (who wore Kathleen's recycled kitty costume) that she should be a pumpkin, though by that time she may very well have ideas of her own. 

Waiting for the Bus

Today is the first day of school here. I made muffins and a little extra coffee for my friend J. and her kids who wait for the bus outside our house. Kathleen and I went out in our pajamas, Elizabeth in a hooded onesie and legwarmers against the morning chill. We waited for the bus, always late on the first day as routes become familiar and proud parents snap pictures, and had our breakfast party.

The other day we were talking  about the start of school, and J. said, "Sara and Henry used to come out and wait for the bus." For less than two weeks, we were out there every morning to see, but in neighborhood/friend lore that is "used to" and I love her for remembering. 

I have sat outside my house for five Septembers—with Henry, with a big belly and a ghost, with Kathleen, with a big belly and Kathleen, and with Kathleen and Elizabeth—to watch these neighbor friends of ours off to school on the first day. I thought I'd watch them get on the bus with Henry in a few years (that is now suddenly next year). Our older friend will have moved on to the other school by the time Kathleen boards the bus as a kindergardener, but our younger friend will wait with her and Elizabeth too. 

This morning we were out in a classic September morning, sky blue, grass dew wet, with coffee and muffins and another neighbor and her dog. It felt a little like a morning block party. Festive.

And as our friends got pictures taken in their first day of school outfits and new backpacks, I found myself thinking not of Henry who would be in preschool (preschool!) this year and ready for the bus next year, but of Kathleen, who is already clamoring to get on the bus. Not yet, my little big girl, not yet, but you will. 

An evening out

I went out for drinks and apps with a good friend tonight to celebrate my birthday. After what feels like weeks of rain bracketing a mini heat wave, it was absolutely perfect weather-wise to sit on the deck, sipping beer and eating nachos and fried catfish and mussels. It was the kind of night that makes me wonder why I don't go out more often.

We were there for a little over three hours, and for probably half of that time we talked about Henry, about what happened when he died, what she remembered, what stood out to her, what I remembered, what I couldn't remember or what was fuzzy.

And here's the thing: it wasn't depressing at all. I love having conversations like these. (Not the experience that led to this conversation, but that, given that experience, the conversation happened.) It was not what I expected of my birthday outing, and yet it was what I needed right now.

A Collage

here's Henry . . . pictures of Henry . . . Down syndrome resource group . . . congrats . . . preparing for surgery . . . back in the hospital . . . thinking of you . . . sending our love . . . Hoping . . . just down the hall . . . wicked cute . . . need anything? . . . that's great news . . . glad to hear about Henry's progress . . . Home?!!? . . . Hurrayyyy! . . . sad news . . . donation in Henry's honor

—Henry's life in email subject lines

Right Where I Am: a week later

His birthday was easy this year, so let out the breath I was holding and moved into June.

Tonight, it struck me as I closed the door to Kathleen's room. I could (should) have a four year old right now. Four. I see that in other children, other families and can't quite picture it here in my house. Four. I know, I recognized that on his birthday, but it hit me with that sudden realization that I can't see four, can't imagine it here.

Tonight, it rolled over me as I sat comforting and settling Elizabeth. I held Henry the day he died—but not the day he was born. And sadness rumbled up though me for the four year old that I will never know. For the first day I will never have. For that last day that I will always have.


All of what I said just before his birthday holds true, but this is true too. This is where I am tonight in the missing wallow and the disbelief.

Four

He would be four today, that boy of mine. Four years ago, he arrived, a day earlier than expected and nothing really went as expected or planned after that.


I got up early with Elizabeth today. I made coffee, and we listened to You Are My Little Bird. I sat with Elizabeth and danced with her when she needed to move. I cried ever so briefly. I remembered being home and scared with Henry, in the hospital and hopeful. I haven't listened to our morning music in a long time. I've missed it.

I had decided last night that I would make fried egg sandwiches for breakfast, because it's what Brian and I had the morning Henry was born. I know this only because I wasn't supposed to eat. I was supposed to have a planned c-section on May 30. Late on May 28, I started spotting. In the wee hours of May 29, I started having contractions, far apart, but growing closer. My OB suggested I come in and be monitored at 8 before my first appointment (I was supposed to be back and forth between the hospital and my doctor's office all morning). When Brian suggested fried egg sandwiches for breakfast, part of me was pretty sure I was having a baby that day and I knew I wasn't supposed to eat before surgery. But, I argued to myself, my doctor hadn't told me not to eat, and if we stayed on schedule I wouldn't get a chance to eat for quite a while. So I ate the fried egg sandwich, and a few hours later we decided that, yes, I should have the baby that day.

We had cake with Kathleen after lunch. A few days ago when we told her Henry's birthday was coming up she said, "I sing 'Happy to You' to Henry." I asked if we should have cake, and she said yes.

My plan, the one thing I really wanted for the day, was to work in Henry's garden. And I did. For hours. I got it all cleaned up, soil loosened, compost in. I planted the dahlias from my friend who manages to dig hers up and not kill them. I planted the delphinium and rosemary I bought for Henry's birthday this year. I moved the pinwheels and flags and stones and sign. I was sweaty and tired afterward—and peaceful. Friends brought by some flowers to plant and I tucked those in around the dahlias where the dirt looked too bare and I had been feeling like it needed something.

I like the physicality of digging, the nurturing and caring. (For my shower when I was pregnant with Henry we had wildflower seeds as a favor. When Henry was in the hospital, my aunt told me she would go work in her Henry garden and feel in a way as if she were caring for him.) I like the space to let my mind wander (to think and remember him or to just be quiet). And I like getting something for his garden each year. It takes the pressure off the idea of a gift; I simply know I will get something for his garden each May.

It was perhaps the most comfortable, peaceful birthday we've had yet. I like to think that I've just gotten to a point where they are easier or that it was because I had a plan and followed through with it, but really it was probably just a good year.

Happy birthday, my sweet boy. I wish as always you were here. What would you be like at four?

Right Where I Am: Three Years, Five Months

Mostly these days, I find I am content. I feel the sunshine, see all the vibrant colors, smell the damp-hope smell of spring. I laugh. I dance with my daughters. My smile includes my eyes.

***

Right now, there is a tautness under all that content. Sunday should be Henry’s fourth birthday, so while I’m sailing smoothly on the surface, I feel everything wound a little tighter in anticipation. I’m a little on the verge, though mostly, so far it’s been okay. It is not the crushing weight of the first May or the utter exhaustion of the second. It is not my sudden realization of the third that my baby would be in fact a little boy not a baby. Would be if he were here.

This May is easier than the past, but with Memorial Day weekend approaching, I find myself taking deep breaths a little bit more often. Still, I have a plan. Whatever else happens that day, I will work in his garden. I will take that time and space, in the middle of a busy weekend of work and family cookouts, and claim it for him. This is my tradition. It isn’t something I set out to do, it simply became what I do, what feels as right as anything probably could.

***

Last Tuesday we went to dinner at a friend’s house. There were three babies there and somebody wanted a picture. There she was in the middle, my girl. On one side the baby five days older than her, on the other a boy four months older. I peeked and then turned away breathing back tears.

I stood stirring the cheese sauce so I wouldn’t have to talk to anybody, caught up in the swirl of memory. Not long after Henry died, we went to dinner here too. It’s a weekly potluck and all through my first pregnancy I was there with these two other pregnant women. That night when we were back after he died, a mom and a dad but two babies down on the floor to “play” with each other. I was standing right there. I wanted to throw up. I wanted to run. And I was paralyzed. I couldn’t move, couldn’t stop staring at the babies he was supposed to grow up with. B— rescued me. He came over and said simply that he couldn’t imagine how I was feeling but that he thought he would come be with me for a little bit. Even now, I am thankful for that kindness.

Last Tuesday after I stood almost crying into the cheese sauce, I smiled at the babies and talked to the “big” kids. I watched Kathleen, a year and a half younger, with them and didn’t see the ghost of Henry at all.

***

Right now, I can talk to other parents about my children, all three of them. I don’t know how it makes people feel, and I’m not sure I care. When I had Kathleen, a year after Henry died, I didn’t know how to talk about being her mom because I couldn’t quite figure out how to talk about being Henry’s mom. I still dread saying that I have a baby who died, but I can say it without coming home and going to bed. I can say it and then I can talk about him as he comes up as I talk about Kathleen, as I talk about Elizabeth.

***

I have pictures of Henry that people printed for us on their home printers. Over the past almost four years they have faded. I can still see me and Brian eager and anxious with Henry as we get ready to take him home from the NICU. I can still see me smiling, too broadly, as they get ready to take him into surgery. I can still see him, my post-surgery no oxygen golden boy with a half smile sitting in his car seat. I can still see us, but we are fading, ghosting, as my memories seem to sometimes. I still struggle to hold onto the surge of joy smiles while letting go of the fear and constant red-alert of his hospital days, but it all dims until something triggers it all sharp and bright again.

***

Right now, I’m frustrated sometimes as I get mired down in work and laundry and making dinner and washing dishes and packing away outgrown clothes and getting out things for summer and . . .

I hate the notion that death gives us perspective, helps us fix our priorities. I don’t think mine have changed all that much. I just get more irritated that I can’t figure out how get the crap out of the way to focus on what matters to me.

***

A few days/weeks ago, I met a friend for chocolate stout cake. We talked about writing and gardens and our husbands’ terrible sense of time and running and food and dead babies and live babies and yearned for-hoped for babies and travel and what we were like in high school. I met her because of the dead babies, and I’m liking getting to know the other pieces of her too. She is but one of the people I’ve been lucky enough to meet on this unlucky journey.

***

Right now, I’m up because I’m liking the quiet not because I’m afraid to go to bed. I remember the restlessness that would come over me at night for those first many months, how I dreaded turning out the light to go to sleep of the wave that would hit me of the sadness and longing and hurt that I had kept slightest bit at bay all day. Now, I just wish I had more time so I could stay up and do all the other things I’d like to do—write, read, think, simply be in the quiet—and still sleep too.

***

Last weekend we had a neighborhood work day to fix up a playground down the street. While there I saw a friend of a friend there with here two kids. “So O’s got a fourth birthday coming up soon,” I said, maybe a bit too brightly. “That’s right! How did you know?” And I reminded her we were in the hospital at the same time. And she remembers, remembers meeting me at baby group, remembers hearing about my story from our mutual friend.

I don’t know what made me mention her son’s birthday. Was I really prompting her to remember Henry? I don’t know. More often these days I find myself trusting that people I know will remember him. I have let go of the need (mostly) to remind people that while I am happy I am still sad, that while I love my daughters I still miss my son.

***

Right now, I still miss Henry and know I always will. I am still confounded some days that he is gone. I still find myself asking How? How can I have a baby who is not here? How can he be gone? I know there will be days that are dark and heavy. I know there will be triggers that send me spiraling, set me sobbing, and I know they probably won’t be the things I expect or prepare myself for. I know too that the dark days will retreat once again and I will again feel the sunshine and see the bright colors and smell the hope. Right now I’m content, happy even.

Three years, five months, nine days out, this is where I am right now.

Much thanks to Angie for this project.