Sunday, February 28, 2010

Looking back on the day

Last year, walking through the soft, big flakes would have triggered a memory. I would have found myself back on Longwood Ave., stumbling along the slippery sidewalk, Henry heavy in his car seat, the oxygen tank slipping off my shoulder. Yes, a bit of weather could have thrown me back into the full-blown panic of trying to get my baby back to the hospital after being discharged into a massive traffic jam caused by a not so massive snow storm. But yesterday, I just noticed the beauty and sighed at the sight of more fallen lilac bush limbs. Then later in the day, my brain made the connection but I didn't get the emotional punch.
***
Today we went to our favorite sugar shack. We took Kathleen for the first time last year, and it triggered a flood of memories and missing. This year was different. We ran into friends who have a little boy who was born three days before Henry. We sat together and talked about a mutual friend who is pregnant again. We laughed at their son bestowing kisses on Kathleen. I fed Kathleen; they admonished their son to sit down and eat. It was fun to have breakfast with somebody we know.

Not once did I look at their son and think that Henry should be sitting across from him at the little kids' picnic table. Not once did I have a stab of what should be but isn't.

Later in the day I thought about the fact that their son is Henry's age, a simple fact once would have paralyzed me. I might have cried all the way home or curled into bed with Henry's blanket once we got here. But lately, things haven't been triggers tripping off emotional explosions. Lately, they just make me connect memories, that may be sad but are not as loaded as they used to be. It's a curious thing.
***
Tomorrow, perhaps, or the next day, the slant of sunlight coming in the window or the scent of moist soil or a paper that got tucked into the wrong box may set me off, leave me clutching the counter top to stand and wipe me out for days. I know I have no power over these triggers. They come unbidden and unsuspected. Right now, the likely candidates aren't hitting me that way.

So for now, for as long as I can, I'll enjoy the fluffy snow and the conversations with the woman who I shared my first big belly days with. I'll watch with a smile as her son plays with my daughter and not bemoan that he doesn't play with my son. I'll enjoy these things as they are today, unmarred by scary memories, unshadowed by what what should have been.

Wednesday, February 24, 2010

Another mother's loss

When Henry was in the hospital, there was an 18-year old named Charlie there waiting for a heart transplant. You'd see him walking the halls, often with a med pump slung around his shoulder. Told he couldn't carry it around, he worked with hospital staff to configure the device to keep him moving. He figured out how many laps of the floor he needed to do to make a mile. I asked him about the walking once and he told me he was doing his best to stay in shape while he waited for his heart.

He marked off an area outside his room with tape, put a couple of chairs and a small table there, and called it his porch. He might sit out there with visitors, chatting or playing chess. He was a budding film maker. Stuck in the hospital, he made it the set for his movie. It was a sucky situation, but he did what he could with it.

There were days when I thought I would go crazy if we didn't get out of the hospital, but watching Charlie doing his laps and making his movies and sitting on his porch, I'd think I can do this.

***
Charlie's mom was one of the first parents I met. I had been avoiding people, especially the ones who looked well established. We didn't know what was happening with Henry, and I thought I wouldn't make any ties because we weren't going to be there long. But one afternoon, I was in the parents resource room using the computers, and it happened to be the coffee hour. I took the cookie offered me and then felt like I should talk, or listen, to these other parents gathered round. Charlie's mom talked about years surgery and meds, of being in and out of the hospital, of how she kept two of all her toiletries with one set in a bag ready to go to the hospital at any time. And I thought I don't want to be her; I don't want that life; I can't do that. 

I'd go on to talk to Charlie's mom many times. She encouraged me on the dark days, talked about the good times, the times out of the hospital. When I wondered if I even dared hope any more, she told me to always, always hope. Have high hopes, but no expectations, she said.

The last time I talked to Charlie's mom was December 13, 2007. We had been discharged from the hospital in to a snowstorm that left Boston in utter gridlock. After going maybe a quarter of a mile in 2 hours, we turned around and went back to the hospital. Brian let me an Henry out on the corner to walk the last couple of blocks while he sat in traffic. Once we got back to the hospital, I couldn't stop crying. I cried because we were still there, it seemed we couldn't escape. I cried because I worried about Henry who got some of his meds late. I cried because this first test of me taking care of my sick baby hadn't gone so well. Charlie's mom told me about one time when Charlie really needed meds and she had to walk to the pharmacy in the snow to get them, how scared she was, how it turned out okay. She talked to me for a long, long time. She told me I was a good mom.

The next morning we left the hospital, and I never saw Charlie's mom again. I would get the occasional email update from her and may send her a quick reply, but that was all.

I remember getting the news that Charlie had gotten his heart. I cried that their wait was over, and I cried for the family that I knew nothing of who had lost a child to give up that heart. I rejoiced for them when good news came and sent out good vibes and prayers and hope when I learned of setbacks.

***
We hadn't heard from Charlie's mom in a while. We knew Charlie had had some major setbacks late last year, and we had wondered how he was doing.

Today I got an email from Charlie's mom about a fundraiser to set up an endowment fund in Charlie's name for Children's. I had to read through the whole string of messages and then Google Charlie's name to really believe it was true. Charlie died back in early December. In some ways this doesn't surprise me, and yet I always had hope for him.

So I'm sitting here on this snowy day, thinking about Charlie and his mom, another mom with an aching heart.

Friday, February 19, 2010

New to me

I had asked my brother-in-law to take pictures of Kathleen's birthday party, which he did. Since there were too many pictures to email easily, he put them all on a CD, and, while he was at it, he added any pictures he had of me and Brian either from his camera or from my mother-in-law's. Within the 300 or so pictures, there were a bunch of Henry. And some of them I had never seen.

This has happened twice before, that somebody sent me pictures of Henry that I had not seen. I will never have a new picture of Henry, but to have a new view of my boy is precious.

Here he is:

Wednesday, February 3, 2010

Baby steps

I was flipping through pictures on the camera, looking to delete some unnecessary shots to make room on the card, and there I was, pregnant with Kathleen.
There she was being lifted from my body but still attached,
tucked on my chest with her feet practically in her mouth,
bundled up to go home for the first time,
practicing lifting her head in tummy time,
enjoying her bath in front of the mirror,
seeing the lilacs bloom
and the rhododendrons.
There she is sitting in a chair by herself, so proud,
at the beach on 4th of July,
on the see-saw with me on vacation,
in the lake, in a backpack,
as a cat on Halloween,
in the Pilgrim parade on Thanksgiving,
holding Henry's cardinal for our Christmas card.
There she is cake on her face, one year old!
How did we get here?

Sunday, she was taking tentative half-steps between ottoman and chair.
Monday, two steps toward me in the afternoon, three in a row that evening.
Tuesday, she took a break.
Today, she is fearless, taking four, five steps, a couple of shuffling sideways steps, before BOOM!

There is still a momentary pause before she goes, as she looks and sizes up how to get from here to there. Then she goes for it, smiling and laughing as she collapses into one of our laps.

Soon she'll just go, no thought, no wondering how to get from here to there. And I will try to stay in the present, but part of me will look back and wonder how we got from there to here, because I can't believe we are here already, that we did all this in just over a year.


And as I write this, I pause and start to make connections to the milestones missed, to the steps that will never be taken, but I stop, because this is Kathleen's moment and because everything, it seems, can tie back to Henry or to grieving or to sadness or to what is not, but right now, like the day when I danced with Kathleen, I just want to feel the joy. I want to feel the wonder and the awe, and I can.