Sunday, November 29, 2009


This year I am thankful.
And it is easy to see why.

My girl is strong and healthy, beautiful and vital. She is growing, moving, eating, giggling, babbling, cuddling, sleeping not quite enough.
And she is here.

But I learned so much about gratitude here:

I learned about the gratitude for the great—he came through surgery, he teetered on the brink of death and survived.
I learned to about gratitude for the minute—a ventilator setting moved on notch closer to extubation, the twitch of a leg as the paralytic wore off, the eyes popping open if only for mere seconds.
I was thankful too for the support, the meals and visits, the cards and emails.
Each night, when I lay on my plastic covered mattress in the tiny dark space in a room allotted for parents of ICU kids, I'd ask for Henry to get better. I'd ask to bring him home. But first I gave thanks. Some days it was easy—he smiled, he came off the ventilator, a fever broke. But other days, I struggled in the darkness to find any bit of light.

I was not particularly virtuous. I looked for the good and gave thanks because I needed to find the good some days. I needed to cling to the threads of hope, however thin.
Thanksgiving 2007
I watched Magie's mom through the glass separating the rooms as she swept in with her coffee to watch the Macy's parade with her daughter. I squeezed the stuffed turkey that made gobbling sounds for Henry and I fretted about leaving him. There was no doubt in my mind that I needed a break from the hospital, but how do you spend your son's first Thanksgiving without him—even if he is too little to know? Magie's mom and I stood in the hallway in our coats. Next year, we agreed, would be Magie and Henry's first Thanksgiving. Next year when undoubtedly they would both be home.

That Thanksgiving I avoided my cousin and his baby born a month after Henry. I sat at a table after dessert with the other moms of little kids and had nothing to say.
Being there was hard, but I didn't want to leave. Brian convinced me to stay overnight, while he returned to Henry. That night I climbed quietly into bed so as not to disturb my grandmother already asleep in the same room. And then I sobbed for all I wasn't thankful for, for all I was missing. I cried for my baby who was so sick. I cried not knowing if I would ever bring him home. I cried for myself because he wasn't there, because none of this was what I wanted or had expected. And from across the room, my grandmother said in her funny no-teeth in voice, "My heart aches for you, Sara." And then I cried harder.
Thanksgiving 2008 I was thankful to be pregnant again, but sad and anxious too. There were three of us pregnant that year. Me almost done, two of my cousin's wives in the early stages. It was a second pregnancy for all of us. But they were both chasing a toddler around.

There were a bunch of little kids running around, and in the chaos, my cousin kept saying, "Just think—next year there will be three more." And I wanted to scream at him to shut up, not to jinx us, not to jinx me, because I no longer lived in a world where I could count on that.  I lived in a world where there should have been one more toddler adding to the hubbub that year, but he wasn't there.
Thanksgiving 2006, I announced that I was pregnant. Three years later, I finally had a baby at  Thanksgiving dinner. Kathleen ate turkey and mashed potato, peas and squash, turnip and green beans. She loved it all. She wore a an Indian headdress and I carried her out with the other kids in their headresses and Pilgrim hats in the procession that has been going on since I was a kid. She was there, and I was thankful.
I am grateful for the girl I have here today, the baby who is moving quickly toward little girl. I am thankful too for the boy who is no longer here with me. I am grateful for each smile and every snuggle and what he taught me about love and being a mom and slowing down and taking each day as it comes for what it is.

Wednesday, November 25, 2009

A Flash of Red

I'm sitting in my car working as Kathleen naps on this gray, rainy day. I look up from an email to gather a thought, and there in the pear tree, a cardinal. That bright red amidst the drab of November, my Henry.

Tuesday, November 17, 2009

Pieces of Henry

I written before about my struggles with telling Henry's story, about feeling that all the good is buried under the rubble of collapsed dreams and hidden by the horrors of a long, tumultuous hospital stay. When Gal wrote about telling her story a new way, I said, "Hmmm . . . how can I do that?" And then I let go or forgot and my mind went on its way, doing its own thing. I didn't actively try to retell Henry's story, but some pieces of him came back to me and have been sitting with me lately, making space for themselves in a place where mostly dark had taken hold.

When I held Henry, two days after he was born, my whole body relaxed. "This is it. This is what I've been waiting for." And in spite of the beeping monitors and the blinking lights and impending surgery, all was right in my world in that moment. My baby. In my arms. So right. 

We would lie together in the morning, him curled on my chest. He fit perfectly in a way Kathleen never did. I'd make sure his canula was in his nose and that the monitor was in reach so I could turn it off with my toes, and we'd rest together. This is perhaps the deepest peace I have ever known. If I needed proof that snuggling with his mama was good for him, I got it in numbers. When he curled up on my chest, his O2 sats went up and his heart rate went down. And again, I felt my body relax. In these moments I found "normal" in ways I didn't throughout the rest of those days. Or maybe I just stopped looking for normal, taken in fully with the slow, deep breaths and the warm, comfortable weight on my chest. 

When Henry was brought back to Children's they put him in one of the big cribs. He looked so tiny and lost in it, but after we had been there a while, one of the nurses said we were lucky to have the big crib because we could climb right in with him. And so I did. I curled like a comma around my boy, snuggling with my baby again as I hadn't been able to for far too long. 

One day in the hospital, he looked around, looked at me, and smiled. He smiled just for me, that big, bright grin. Many days I have trouble remembering what his smile really looked like, but I can always remember just what it felt like, how I wanted to smile myself, how I stopped sinking and floated up on that smile. 

This is his story as much as the surgery and ambulances and codes and diagnoses. They are not the first pieces of his story I remember. But I want them to be. 

Sunday, November 8, 2009

Drained and Refilling

Yesterday, Brian and I spent the day in Boston for Children's program for bereaved parents. I knew it would be an exhausting day, but I underestimated how completely and utterly drained I would feel. I ran into the burrito place across the street from the hospital to get us a snack for the road home and found I could hardly stand.
It was hard being back there. The program itself was not at the main hospital, but in a building down the street. But we were there passing the same streets and buildings I walked by so many times during the fall of 2007. We were stuck in traffic on Huntington where we sat in a snowstorm trying to get back to the hospital as Henry's oxygen ran low after we were discharged into a snowstorm. We waited for a light in front of the building where I waited in my parents car when the nurse called to find out where we were because Henry "wasn't doing well" the night he almost died. We were back in this place where Henry got three months of life he might not have had otherwise, where he got a chance at many more months and years, this place where I worried and waited, this place were he and I lived for three months with Brian visiting as much as he could. Two years ago I had been living in Boston with Henry for almost two months with no sense of when we might go home. This was where we were yesterday, even though I did not walk through the door of the hospital, enter the barren garden, or ride the elevator to the 8th floor. 

There were familiar faces: the psychologist from the floor who had known Henry and checked in on me periodically, one of the women from the center for families who had renewed my key card every morning so that I could have my little room to sleep in each night, a couple from our grief group, one of the facilitators from that group. It is always so odd to go to events at the hospital now a happy-sad reunion of sorts. I'm glad to see these people I know and yet the reason for gathering is not a happy one at all.

We spent the day talking about our children. Brian and I were on a parent panel. I was glad to have a chance to tell our story, Henry's story. The speaking to a group, which I usually hate, was not an issue, but what to say, where to start. I'm not sure what I finally did say— a little about what happened to Henry, a little about losing my first baby and figuring out what being a mom meant after that, a little about where I am now . . .

Much of the day was spent talking with other parents in small groups, our group was made up of people who had lost infants. We shared stories and pictures, how we dealt with different situations, the horrible things people had said, the wonderful things people had done.

It is hard but necessary to go back there, hard but necessary to listen to these stories that are unique but sound so familiar. I went to this program because I needed to take time out, to pause to think about Henry and this journey we're on. I went because I think going back from time to time is part of this process for me.

At the end of the day, we went to my sisters and picked up Kathleen. Hugs and kisses for my girl, glowing reports of the day she had had with her nana and grampy and aunt and cousin. We got her ready for bed and bundled her in the car. We got home around 7:30 and it felt like the middle of the night. I was in bed by 9:30, unheard of around here, but my mind was shutting down, my body demanded that I do nothing else. I was fully drained.
So today, I refill and replenish. Eight and a half hours of sleep (6.5 + 2) did wonders. I worked my body in ways that felt good—a long run, raking leaves. I treated myself to banana bread with chocolate chips. I soaked up sunshine on an unseasonably warm November day. And I reveled in baby giggles as Kathleen played in my leaf piles. I'm still tired, but slowly restoring myself

Friday, November 6, 2009

Your Brother

We have pictures of Henry in almost every room of our house. I think the kitchen and Kathleen's room are the two exceptions and I suspect when her room is more finished there will be a picture of him in there too. We even have a picture of him on a shelf in the bathroom (I'm just now wondering if this is weird). When Brian and I change Kathleen, we often show her the picture of Henry. Lately she's started looking up at it or pointing at it.

When I turn Henry's lamps on in the evening and off in the morning, if Kathleen is in my arms, I show her his picture and we say good morning or good evening to Henry.

"That's Henry," I tell her. "That's your brother." It feels good to be showing her the picture, letting her know she has a brother, pointing him out as part of our family. But that is always swiftly followed with the pang of missing him of the silent add on to my sentence, "That's your brother who you will never know."
A brother who will never tell you to go away as you follow him wanting nothing more than to be with him.
A brother who will never get in a fight because somebody teased his little sister.
A brother who will never tease you himself.
A brother you will never play with or fight with.
A brother you can love but never know.
Before you were born, this made me sad, that you would never know your brother. I felt, suddenly, certain that you did know him, had met him even before you came to us. But I want you to know him here. I never had a brother, but I love my sisters so. I want you to have a sibling to grow up with.

All this with a picture and the simple sentence, "That's your brother."

She cannot know him as I wish she could, but she will know him. She already does.