Saturday, September 26, 2009

The Cemetery

I stopped at the cemetery today on my way out of town. So many times I pass by without stopping, but always I like to visit before I leave town for a few days, and if I can, stop on my way back in.

On Sunday, I planted mums, dark red ones, in front of the family stone. Henry’s name is not on this stone because we want to get him a stone of his own. But I’ve found that plants left directly on his grave, whether in a basket or planted directly in the ground get stolen or dug up. 

It’s hard enough to go to the cemetery to visit my baby boy. I don’t need to find the little things I leave for him damaged or gone. It disheartens me every time. Brian gets enraged. I mostly just get weary and sad.

Today there was a huge chunk out of the front of the mum. Perhaps from a mower; perhaps from somebody plucking it off. I’ve never been sure if it was an act of malice or not caring. Either way it upsets me.

It bothered me for a long time as I sat in traffic at the beginning of my trip. I was on the verge of tears and trying to stay focused on the road. So I tried to let the frustration go, and I focused on this.

Henry was buried in December when the ground was hard and frozen. Soon his grave was covered with snow. Then the snow retreated and we could see the bare earth, his tiny grave. As the ground warmed, they prepared to reseed it. Brian and I would pick up little stones each time we visited, stones that would sit on a shelf or in our pockets, a token from Henry’s place. One of the last days before they seeded, we were at the cemetery and I just started making a heart for Henry out of the stones. Brian helped, and then together we pieced out his name. It was the only marker we had for his grave at that point.

We went away, knowing we wouldn’t see our marker again, for the seed was to be planted the next day. Weeks later I got an envelope in the mail, somebody in town, but I name I only recognized from a card when Henry died. Inside I found pictures of Henry’s stone heart.

Brian ran into the cemetery caretaker, who told him that he had hated to cover it up. But, he said, I put the first layer down carefully. It’s still there underneath.

So I hold on to this. If somebody chooses to steal flowers off my baby’s grave or the cemetery staff can’t be bothered to not cut down what I plant for him, one day somebody cared enough to preserve—in pictures and in reality—Henry’s stone heart. Flowers may go missing, but his name and his symbol are just a few inches down. Knowing they are there is a slight comfort; knowing somebody took the time for that kindness, much more of one.

I’m still upset, and will be, when I think of the flowers, but there is a slight redemption to hold onto. 

Tuesday, September 22, 2009

Work in progress

In comments about my post about patterns, Catherine and Kate both talked about the trust factor and I've been thinking on that.  Trust is huge.

I've only recently gotten to the point where I find myself really, truly trusting that people I know--people who knew Henry, who loved him and love me--will not forget him, will understand that we continue to miss him, despite the joy and blessings that have entered our lives.

So how do I trust people who never knew him to feel his powerful, determined spirit and not simply the weight of “dead baby”?

I suppose that is where I feel I fail, because I am still mired down in the separation, the oxygen, the ambulance rides, and the ICUs. I’m still burdened by the codes and the med schedule and the endlessly shifting ground of new diagnoses. I am still, for myself, trying to dig Henry out from that rubble.

I can list all the meds he came home on in December 2007, but I can’t remember what he smelled like or if his eyes were the same clear blue as Kathleen’s or if he had my fingers as it looks like she does.

I get him in flashes: A cardinal streaking by my window brings to mind his smile. Kathleen’s face studying a flower reminds me of Henry’s effort and determination to kick his babychimes. I have felt his wholeness in an inky black sky strewn with stars. I have felt his absence standing before the vastness of the ocean, my love stretching away beyond the horizon.

Saying that Kathleen is 9 months old, has three teeth, is taking great delight in feeding herself Cheerios, and nestles her head into her mama’s shoulder only when she is tired, does not tell you who Kathleen is, but you begin to get a picture.

Do you begin to get a picture when I say Henry died at 6 ½ months, had hardly any hair, worked doggedly at getting his pacifier in his mouth (when he didn’t have a tube in there), and kept his mama going with his smiles? Or do you get stuck at the word died?

That’s where I get stuck most of the time. So maybe it isn’t about trusting others and their responses, but about trusting myself to be okay in that moment when somebody asks how old my son is and to remember and express my Henry, my baby boy, who I carried and loved, not just the medical interventions and loss that swirl between us. I’ll keep working on it.

Friday, September 18, 2009

To live in this world

A friend emailed last night to invite me to a reading by Mary Oliver, and immediately I thought of these lines that I love, these lines that arrived in one of the very first cards after Henry died: 
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.

    —Mary Oliver , "In Blackwater Woods"
                   You can read the whole poem here.

Thursday, September 10, 2009


The other night, I sat down and read through my blog posts. I do this occasionally, the same way I read through old journals. I do it to see where I was, who I was, and how far I've come, and to find the patterns that emerge over months and years.

Earlier this month:
Sometimes talking about him seems so hard.
"And you have a son, Henry."
"Yes, we do."
It's that simple.

It's a theme I found repeated. Back in March, I wrote about talking about Henry at two baby groups:
I don't purposefully hide Henry. I don't avoid talking about him, because I do like to talk about him. But perhaps sometimes I think too much about talking about him.

[The group leader] also said that whenever I say his name she pictures his beautiful little face. Somebody thought of my baby yesterday—and all I had to say was his name.

I described getting together with somebody I had met when I took Henry to babygroup, how hard I expected it to be. How natural it was.

In July, there was the surprise of people willing to talk beyond platitudes and glossing over:
It is nice when people aren't afraid to talk about my baby and my loss and the wonder of his life and my sadness. I'm always surprised when I find them. 

And in August, there was my Facebook fiasco cleared up.

It's clear: I get anxious about talking about Henry, even though I've seen again and again that it can be a good experience. So why is it still so hard?

Maybe it's this:
It still hurts, still feels like a little piece of me dies when I say, "He died."

Or the memory of what it felt like when somebody just walked away stands out more strongly than any other.

Or I don't know what to say when somebody says, "I'm sorry" and there is a space that I feel like I need to fill.

Or  sometimes I feel like Henry is still buried under all the tubes and wires and procedures and anxiety and fear and to get to talking about him I need to tell about all that.  And sometimes that's exhausting.

Sometimes people have opened the door. They have asked a question about him or have given space to talk about him. Other times I need to open the door, especially with new people I meet. Each time I have to choose to open it and wonder what I will find behind it. And that's the scary part, the unknown outside the door each time. So that's what I'm working on: talking about Henry, saying I have two children, I have a baby who died—and figuring out what I want to say next, if I have the chance. I've been working on it for a while. You've seen me working on it for nine months now, and doubtless you will see me working on it for many more. Forgive me if I repeat myself, if I learn this lesson over and over and over again. Maybe someday it will stick.

Have you found patterns, things you keep coming back to, as you write about your baby or loss?

Tuesday, September 8, 2009

Well Visit

Kathleen is feeling much better. The fever broke yesterday and the rash appeared, just as we were told it would. With the fever gone, my baby girl seemed more herself, aside from a need to sleep. Two daytime naps of almost two hours each? Unheard of since she outgrew the swing.

We were back at the doctor today for Kathleen's regular 9 month appointment, scheduled way back in June. The doctor's office was a completely different place this morning. Friday evening it was chaotic with their walk-in flu clinic and my swirling memories and simmering anxiety. This morning it was calm, quiet, routine.

We will go back in a couple of weeks for a flu vaccine and a hearing recheck. Hopefully that's all for a while. Three times in a month is enough.

Yet I remember when three appointments in a week were routine for Henry. What progress I felt like we were making when we began to average only one appointment a week. Pediatrician, weight rechecks, visiting nurse, cardiologist, hearing rechecks, geneticist, chest x-rays, blood tests, PT . . . and we never made it to the ENT or the audiologist or the ophthamologist, didn't get to pulmonologist, pulmonary hypertension specialist, OT, speech therapist, and who knows what other specialist were waiting for us down the road.

That Kathleen has seen only a pediatrician and had only one non-regular visit is a fine thing. That they let us walk out and don't expect to see us for three months at at time is still amazing to me. May she stay healthy and strong.

Friday, September 4, 2009

Sick Visit

We took Kathleen in for a sick visit today. She has Coxackie virus. We were told to give her Tylenol and expect her to have a fever for a couple more days and then a rash. No big deal. They've been seeing a lot of it.

Kathleen has been fussy and clingy for the past few days. I thought maybe it was just the cold she's had lingering. Then yesterday, she was hot. I took her temperature under her arm and it was a little high, so I got a rectal and it was normal. Odd, but I checked it twice. No fever. But I knew she wasn't herself.

She woke up all smiles this morning, but wouldn't eat most of her breakfast or most of her lunch. Brian took her for a walk in the afternoon and noticed she was quite warm again. This time, the underarm thermometer clearly picked up a fever, and the rectal agreed—102.6.

So I called the pediatrician's office, while Brian got our screeching baby dressed. Despite the dread in my stomach, I half expected them to tell me to give her some Tylenol and call back if the fever didn't go down, but the nurse said they better see her. So I gave Kathleen some Tylenol and a bottle and sat and rocked with her hot head on my chest for the hour and a half before we could go.

Maybe I should bring a change of clothes with me.
This is the irrational part of my brain talking. The part of my brain that reminds me that the last time I brought my baby in for a sick visit in September, he just seemed to have a cold. And then I was in an ambulance and then my baby was on a ventilator and then . . .

My rational brain says.
He was really sick. He had just had surgery, had a bad heart, lung problems. It wasn't really the cold.

This part of my brain has let me go through my day for the last week as Kathleen sniffled and coughed and otherwise seemed just fine. But with this sick visit, the irrational tried to take over.

I had been struggling with September already, knowing that the day that was the beginning of the long-drawn out end was approaching, that day when the pediatrician put oxygen on Henry and called an ambulance, thus beginning a three-month hospitalization. That memory has been bubbling around under the surface, and it boiled over today when we carried Kathleen in to see the doctor.

In another world, I would simply be wishing Kathleen would feel better and lamenting that I had to cancel a visit from friend Alexa. No tapas and sangria for me tomorrow.

But here I am in babylost world, where everything looks different. I do hope my baby girl feels better. I am probably more patient as I sit with her feverish body snuggled into me, poor thing, than I would be in that other world. But I am more scared too, because I know what the inside of an ambulance looks like, I know how the PICU sounds, and I know just how quickly things can change from okay to unbelievably not okay. I believe she will be fine, I do, but I can't banish the anxiety.

So tonight, I'll give her Tylenol and sleep with her close and take deep breaths and tell myself she will be okay. In the next few days, I'll try to stay calm as I wait for her fever to clear, her fussiness to pass, my smiley girl to come back. And over the next few months, I'll face those memories again, the ones from September to December 2007. They've started, with a vengeance, today.

Wednesday, September 2, 2009

First Day of School

Kathleen and I stepped outside to say hello to our neighbor M. before she got on the bus for the first day of school. She's in second grade now and will be picked up at the other end of our short block, so we saw her and wished her a good day but didn't actually see her off as we did so many times last spring. She's an old pro at the bus now, having ridden it for two years.

But two years ago, I watched her get on that bus for the first time. Henry and I sat out on the porch on a cool September morning to wave goodbye. She was so tentative. I watched and Henry watched and her parents watched and her brother waited to see if she would actually go. Then, an older girl she knew met her at the door and M. got on and sat with her and the bus left. A few days later, M. told me that she would hold Henry's hand on his first day of school and sit with him so he wouldn't be scared to get on the bus. I smiled seeing the two of them five years in the future, my boy with his bright smile, his bigger friend taking care of him.

A few days later, Henry ended up in the hospital. Two days after that we were moved back to Boston, and we didn't know what was wrong. During that long hospitalization, I kept telling Henry about home. I'd sing "Old McDonald" to him and tell him about all the animals he would see at the farm down the road. I told him how M. would teach him to feed a lamb a bottle. I talked about playing with the kids, working in our garden. And I told him about M. and the school bus. And I kept believing she would one day help him onto that bus.

Last September, it was me with empty arms and a big belly watching her get on that bus. The bus stop was on the side of the house rather than out front. She was more confident. And all I could think was that she would never hold Henry's hand as he got on that bus.

Today was a gorgeous, cool, dry, perfect fall morning. The sky was blue and clear. The day screamed September. I reveled in that and I delighted in Kathleen's laugh as we stood by the back door. Just a little piece of me was out front on the porch steps with a different baby in my arms, a littler baby, one who couldn't hold up his own head yet, but one who had just as much possibility ahead of him as the girl I held today.

On the first day of school, I can't help but think back to a lovely morning with my baby boy, a morning when my fear for him was gone, when I was just a regular mama who could expect that in five years she'd wave goodbye and wonder how her baby got so big.