Saturday, January 30, 2010

A time to dance

I was feeling sluggish and missing our daily walk, but it was frigid here today, far to cold and windy to go out. So I cranked the music, a little Rani Arbo, a little Squirrel Nut Zippers, and we danced. I danced for Kathleen and she watched and laughed, and then I scooped her up and zipped her all over the room. Brian heard the Squirrel Nuts and came down and danced with us for a song too.

Joy and laughter and delight
twirling around with Kathleen in my arms.

Mid-twirl, the memory caught me for a moment, made me miss a step.
The memory of
twirling slowly
with Henry in my arms.
Twirling to show that I can,
that there is nothing attached to him
no lines to trip on or step over.

All that in an instant. I pushed it away, wanting to stay in the vortex of pure joy of dancing with my giggly, grinning girl. So fun, so silly, so alive.

But tonight that image came back to me, the image of me with Henry, not in our living room, but in a hospital room eight floors up, overlooking busy city streets, sun streaming in the windows. There was no music, unless my excitement was audible.

Tonight the memory of twirling with my boy made me smile. It was the first time I was able to dance with him, the first time we were untethered, free to move, to go, to twirl.

Another day, I might lament that we will never dance together again, never twirl until we fall down dizzy and laughing, but not tonight.

Tonight it is simply enough that we got to dance.

Friday, January 29, 2010

The view from where I sit, revisited

Last January, I wrote about sitting in my glider rocker in my living room and how that experience had changed from sitting in that chair the January before.

As I sit in my chair now, my view has changed again. The room itself is different. The pictures of Henry are still on the mantle and on top of the TV. His memory lamp and picture still sit on the bookcase next to dried flowers from one of the arrangements from his funeral.

But the walls are no longer bare. Paintings and the shelves we took down to paint the room before Henry was born are finally back up. The table of sympathy cards and thank you notes in that sat next to my chair in 2007, made way in 2008 for the baby swing. Now that corner is home to a giant basket of stuffed animals and a milk crate full of board books. The homey braided rug made way for a cushy Oriental, and the golden tones pick up the light of the morning sun. The coffee table is gone (one less thing to climb or bump a head on), more room to play. Toys of all types fill in the perimeter of the room.

My chair sits in the living room where it has been since we brought Henry home the first time. These days it sits, but I don't sit in it much. I'm on the floor playing with Kathleen or we are out visiting people or running errands or having a snack together in the kitchen, and if she is asleep, I'm most likely sitting at my desk trying to get a little work done.

My surroundings have changed. The rhythm of my day has changed, too. Mostly I am asleep in those quiet pre-dawn hours Kathleen and I used to share; rarely do I see the darkness turn gray and then rose and then bright yellow as day begins in earnest. Kathleen still sits with me when she is not feeling well and sometimes when she is tired, but mostly she is busy: pulling books off shelves, testing her balance, trying to climb onto the ottoman, finding the Cheerios she dropped earlier, emptying and filling bins of toys . . .

Much has changed in a year.

But when I have a chance to sit again, this remains: I still look at the pictures of Henry, now two years gone, and I still struggle to believe, to comprehend that I had a baby boy, that I sat in this chair and rocked him, that he is gone, gone, never to be held, never to be rocked again. I look around at all the signs of my girl, who I held so new and so precious last January; she is still with me, now chubby cheeks and chunky thighs and giddy giggles.

I sit in this chair and remember, remember sitting with both my babies, rocking them, feeding them, singing to them.
I sit in this chair, one baby tucked into bed, the other tucked into my heart.

I sit, as I did last year, with the grief and the gratitude, the ache and the awe. 

Friday, January 22, 2010

And so it goes

I read these lines on another blog today:
Death and birth. Joy and sorrow. A beautiful cycle  so very full and intermingling. And so it goes.
Ah, but it's easier to see the beauty in the cycle when the death comes at the end of a long, full life.

In early December 2007, Henry was getting poised for discharge, and my friend Amy's dad died. Even for him, the end was too soon, but when I went to the wake, her mom told me she had been thinking about the circle of life, her husband passing and Henry on the upswing. Weeks later, when she came to Henry's funeral, all I could think was that they weren't both supposed to go, that Henry was just starting his go round.

I am not unsympathetic to this woman who just lost her grandmother. It is only in the last few years that I have realized my own grandmother is mortal. She is still going strong at 94. She has been slowly slowing down, but she still amazes me. In such a life, I can see the cycle as it should be, the sorrow still coming with the end, yet the knowledge that a life was fully lived.

Maybe Henry's life was fully lived. Maybe he did all he was meant to do. But I think of how much he never did, will never get to do. I think of what I will never do with him, never see him do, and it feels incomplete.

Death, birth, joy, sorrow.
And so it goes.

Saturday, January 16, 2010

A Brighter Day

Today the sun shone bright,
the air was warm and gentle,
and everything seemed just a bit easier.

Friday, January 15, 2010

Letting go

I was just rereading these lines that I love by Mary Oliver
To live in this world

you must be able
to do three things:
to love what is mortal;
to hold it

against your bones knowing
your own life depends on it;
and, when the time comes to let it go,
to let it go.
A friend sent these words to me in one of the first cards I received after Henry died. She said these lines had been running through her head since she heard the news as she thought of me and how I had love and held Henry. And how I had to let him go.

Letting go, it seems is not a one shot deal, something we do and are done with, or even something we do and then deal with. It is, I think, instead an ongoing process. I think I'm at a point where I need to let go a little more and I'm not sure how to do it.

Tuesday, January 12, 2010


I'm falling
or falling apart.
these last two days.

An ambulance, lights and siren on, on a certain stretch of road—it is the route we traveled, Henry and I, that day in September. Seeing the ambulance, I am not there, not in the back with Henry and the oxygen and my bag jammed under my feet. I'm not there, but the terror grips my heart for a moment and I cry out.

State-insurance paperwork, poorly worded confusing questions, like the reams I filled out to get Henry enrolled in services when he was in the hospital. It took me a month or more. I was thick-headed, uncertain about how to fill out to forms. When is says you does it mean me or him? Here it means you. There it is him. Pages to determine what he can do or can't do. Dress himself, feed himself, walk, speak . . . he's 6 months old. I don't know the numbers, don't have the paperwork I need. I went back to the financial aid office again and again and again. He was finally approved. The letter was sent the day he died. Today I filled out some of the same paperwork to get assistance with our insurance premiums. All that came flooding back with a stack of paper today.

Last night, Kathleen woke and would not settle. I rocked and rocked her. She would almost fall asleep and then jerk herself up. She grabbed hold of my pajamas. "You can let go," I told her, wanting her to give in to the sleep she so needed. But I have said those words before, and the memory gripped me. And I spiraled down, down, down.

I said those words in October 2007, the night we thought Henry might die. I looked at his pale little body, laid out under the lights, covered with more tube and wires and equipment than I had seen even right after his surgery. He had already been through so much. "If you've had enough, you can let go. You can stop." Did I mean it? I wanted him to go if he was ready, not wait for me, for I would never really be ready, no matter what I told him. "You can let go. But please, wait until Daddy gets here." And he did. Brian arrived, my sisters, my in-laws, my parents were already there. They set aside a room for our family to wait in. Henry started to look just a wee bit pinker. His numbers looked better. To hear my mom tell the story now, she was foolish to call and worry everyone. But he almost died that night. He did, and I tried to let him go if he needed to.

In December I said it again as I felt him slipping from me, as I sang to him the names of all the people who loved him, I was trying so hard to hold on to him. My mom heard my singing, but didn't understand. "I can't hear you. I don't know what you are saying." And I shushed her away, my song the last thread between me and my baby.

Twice I told my baby he could let go, he could go, he could be free from all his little body had put him through.
Twice I tried to mean it, but couldn't really.
You can let go.

He finally did.
And then I had to.
Had to let go.
Let go of the thread of song.
Let go eventually of his body.
And now I struggle:
How do I hold on to him and let him go at the same time?

I'm falling apart
falling into deep waters, flailing, drowning.
Just two days ago, I wrote to Sally about healing.
Just over a week ago, I wrote of the lifting that came with the passing of December.
And today, I sat on my kitchen floor and wept.
I sat and could do nothing else.

And now, I have pulled the pieces together again
and I sit with the drained, weary feeling that comes
after the sobbing and the memories.
And I wonder if the sun will shine tomorrow
or if I'll fall a little more.

Sunday, January 10, 2010

Going to bed

Lately I've been having trouble going to bed. I find myself staying up late, even when Kathleen is settled. I'd say that I'm just enjoying the time to myself, except I'm not really. I'm not reading or writing or working on the projects that I look at all day unable to begin. I'm not doing something I care about or want to do. Instead I'm reading blogs online, searching randomly, endlessly, playing games online, mindlessly.

This is what I did for months in early 2008, because I couldn't go to bed, because as my mind and body began to shut down for the night, I let my guard down and the pain that I had pushed away just enough to be able to breathe through the course of the day came in and crushed me. I cried hard, though usually not too long. So I dreaded going to bed. Each night I'd put it off, midnight, 1, 3 . . ., but no matter when I went, grief still hit me hard.

It isn't the sadness that hits me when I turn out the light now, but I'm not sure what it is. I'm a bit restless at night, unable to settle, not really able to focus, and it reminds me of sitting in the darkness, searching, searching, searching for somebody like me. Somebody who understood why I was sitting here exhausted unable to go to bed.

So here I am again writing online, peeking to see if it's my turn in my Scrabble game, looking to see if any of my favorite blogs have been updated . . . and waiting to see what's going on, what it is that's nagging me and keeping me from wanting to shut down.

Friday, January 8, 2010

One Year

A year ago today I started writing here, soon after Kathleen was born, a time when many seem to retreat. I didn't write in the first raw days, weeks, months after Henry died. It took me a little while to discover this online community of people who had lost a baby. Once I did, I wanted to add my voice to the conversation, but I couldn't wrap my mind around how to get started. Should I just jump in? Did I need to explain everything that had happened to Henry, all we had been through together? Where to start? It overwhelmed me as so many things did that first year. So I waited. Then after the first year without Henry ended and we had survived the holidays and were beginning to settle in to the ever changing rhythms of a new baby, I just jumped in. A paper in the mail triggered a memory, and I was off. A year, 110 posts later, here I am, and I think I'll stay for a while. Thank you for joining me along the way.

Tuesday, January 5, 2010

Where are they now?

I was watching an online training about CPR earlier and it brought me back to the CPR for parents course I took right before Henry was discharged from the NICU. There was another mom there that I recognized. We had been on the same pumping schedule, so I saw her often. And we were in the same oxygen training.

I have no idea what her name was. I never asked.

But as I watched this video and was transported back to the class where her baby's oxygen monitor kept beeping, I wondered how she is doing, how her baby is doing, if he came off oxygen, if he's okay.

Where is she now, this woman nameless to me? And what about these others we shared experience with:
The couple with the name that sound like ours (Be, not Ba, we'd have to say at the NICU desk), the ones who were only at the same hospital as us because their insurance wouldn't let them be closer to home.

And Dawn, who had to leave to get buttons removed from her c-section incision (I had never heard of such a thing). Her baby was in the first room on the left in the CICU. Her mother happened to eat the only kind of cereal I eat. She offered me some one day and then put her name and mine on the box that she left in the communal kitchen.

And the woman whose daughter had a brain tumor removed. She had a strong Boston accent and always looked dressed up.

And our string of roommates: Jonathan, Xavier, Mariana, . . . .

Or the woman who was trying to do online classes, whose dad was the same age as Brian, who always, always talked to me.

I wonder where they are now, how they are doing, how their babies are. I wonder how many have left that behind as a bad beginning, how many have the hospital as a regular part of their lives, how many are on the path I'm on. I'm curious about these people who were part of my daily life, part of something scary and hard, who I know so little about really, but who I don't forget.

Sunday, January 3, 2010

The lifting

A new year, a new month and already things feel a little lighter. I am glad to leave December behind.

These words from one of the songs on Henry's CD keep coming to mind:

Oh little red bird
Come to my window sill
Been so lonesome
Shaking that morning chill
Oh little red bird
Open your mouth and say
Been so lonesome
Just about flown away

So long now I've been out
In the rain and snow
But winter's come and gone
A little bird told me so
—Gillian Welch

It is cold here, too bitter to even go for a walk, and yet it does feel like winter has come and gone with the another December behind me.

It will come again, but for now I am back out of the rain and snow. And every now and then I see one of the red birds that remind me of my Henry.