Saturday, October 31, 2009

Thursday, October 29, 2009

Out of the woodwork

Can I say people are coming out of the woodwork if it's only happened twice? Two weeks ago, I ran into a mom I knew from the baby group I went to with Henry. Today, again, I was recognized as Henry's mom by another  mom from that group.

I was out for a run, passing a parked car as I neared home, and somebody spoke to me. I was kind of in a zone and I assumed the woman wanted directions, but the question she asked was "Are you Henry's mom?"

It's nice to hear his name.

It is somewhat surprising to me that I have not had these encounters before now. True, I have not gone where children are much, but I have been to the grocery store, the library, doctors offices, yoga . . . I find it strange that I have not seen any of the people from the group before now. Or maybe I was just too in a fog to see them before; maybe I didn't see them and they left me alone. Maybe I'm just now ready for them. They have helped me open up a little more. They've helped me let go just a bit more of the protective covering over my heart. And I wonder sometimes what I'm afraid of in my encounters with the world.

Sunday, October 25, 2009


I've been thinking all week of the night Henry almost died and the night before that when he turned blue in my arms and I almost lost myself. I meant to write about those earlier in the week, but each night it got late and Kathleen woke up and I eventually quit and went to bed. Tonight, I sat down to write about the Buddy Walk we did today and about learning Henry had Down syndrome, and I had just started when Kathleen started crying. I went up into her dark room and reached into the crib and the top of her head was sticky and wet. My first thought was blood, but no, vomit.

I got her cleaned up—bath, hair washed, fresh diaper, clean pjs, new sleep sack—and then went up to tackle the crib. While I was wrestling the sheets on to the crib mattress, Henry's last night came to me and is sitting with me still. It is not a night I like to remember. In fact, it is one of the few events of Henry's life that I did not relive last year.

Sitting in Kathleen's room, I could see the feeding pump on its pole by one end of the crib, hear the oxygen machine, smell the diarrhea, for that was Henry's problem that night. Over and over and over we changed him and the sheets and finally gave up and left him just in a diaper. I was on the phone to Children's and our pediatrician. I hear the panic, the rising hysteria, in my voice.

I was so scared to take him to the ER and expose him to all those germs. I was so scared to take him to a hospital less than 48 hours after we left one for fear they would take him back.

He had a fever that night. We gave him Tylenol, maybe ibuprofen too. I worried about hydration with him not keeping anything in. I didn't worry so much about the fever. This is the detail I focus in on now. I knew— had seen, time and again—how even a low fever affected Henry's heart rate, and once his heart rate went up, his heart didn't pump all that effectively and pressure built up and he started into a pulmonary hypertensive cycle. I had been vigilant about fever in the hospital. I had worried that outside people would pooh-pooh me when I told them he had a low-grade fever. I didn't imagine I'd be the one to ignore the fever.

I was so tired that night. Three months in the hospital, three months of dramatic ups and downs daily, or within the day, had taken their toll. Sleeping on upright in a chair or on the floor the last night in the hospital with just sheet hadn't helped. A night at home with meds every few hours hadn't helped either. I was delirious with exhaustion.

We did not take him to the hospital that night, but to our pediatrician the next day and from there to the hospital, but that's a different story, or a different piece of it, one I don't have energy to tackle tonight. I have a baby with a stomach bug, who is sleeping right now but may wake up any time.

It's okay, I told her, but realized she doesn't feel at all okay right now.
So I amended to, You'll be okay.
And then for me: You have to be okay.
And I mostly believe it, but tonight the shadows in her room were dark and was in a place I didn't want to be. Her warm body, so big!, snuggled against me brought me back to the now, but those memories I don't want persist in lingering.

Thursday, October 15, 2009

Henry's mom

I took Kathleen to the parent center today. I was chatting with a mom I don't know. She started to say something about when they start to crawl, then paused and asked if Kathleen was my first. Oh, the dreaded question.

What she wanted to know was: Have you done this before? So I explained that Kathleen was my second child, but that my first died at 6 months, so this was my first time dealing with crawling. She expressed sympathy and then a baby, which, I don't know, distracted us, and we came back to her comment on crawling.

It's not getting easier to say my baby died, but I think I'm getting better at it.

Shortly after that exchange, another mom, one who looked familiar though I couldn't place her, said to me, "Are you Henry's mom?" I told her I was and she said she knew me from the baby group at the hospital. She had a brand-new baby in arms and her 2+ year old, the one I had known only as a tiny baby.

When I go out in places where children are plentiful, I can't help but look for familiar faces chasing the 2-year-olds, but until today, I hadn't seen any. I thought it would be harder (as I am wont to do). Instead, I found it nice to be known, to be recognized, by somebody as Henry's mom.

Tuesday, October 13, 2009

My New Meditation

I went back to yoga about a month after Henry was born. I happened to go to a candle-lit yoga-meditation class, and it was incredibly powerful.

So every Thursday, I would go out into the cold dark to go to class. Some nights there was music, some only silence. Lights were dim and eventually out except for the dancing light of candles about the room. We breathed, we sat, we did poses, we rested, we sat some more. I repeated the mantra "heart, heal, hope" or I used the mantra our teach gave us for the day. I relaxed. I even loosened the tight, protective grip on my tender, broken heart.

At the end of that first class, I wept.
 It was not the only time.

Meditation had a way of moving things within me, not thoughts, but pure emotion, powerful energy that welled up from within me, unsticking where I didn't know I was stuck. Some nights I left peaceful, others worn out. It was an important part of my grieving work. I miss it.

Since Kathleen's birth, I have had no time for yoga classes, no time to sit on a cushion or mat, little time to be in quiet, little time to focus. I tried to carve out time after Kathleen went to bed to sit for bit, to breathe deeply, to quiet and center myself, but most nights I was too tired.

So I started doing rocking meditation. When I sit to put Kathleen to bed, I begin caught up in the end of the day. I am frustrated by and tired from late afternoon fussiness. My mind runs over the list of things that didn't get done, races ahead to the work I must do, gets impatient about my dinner yet to be eaten. I feel the tension in my own body as I try to soothe and settle her. Deep breaths. In slowly, out slowly. Let go. Little by little, I relax.

The room is dark and I can only see her outline, but I can smell her clean baby smell. I feel her whispery soft hair against my cheek as I rest my head on hers. I hear her soft breathing punctuated by a whimper here or there. I feel her warmth and heft on my lap, feel her stop fighting against me, stop fidgeting, go limp into sleep. And still I sit and breathe and hold her while I can. I am no longer looking back at the day that is ending or ahead at what I have yet to do before I climb into bed. I am simply here, quiet, still, with my girl. I am present in this moment, aware of her and me and the comfortable fit of her body in my lap.

Eventually, I try to carefully place her in the crib. I step out of her room into the bright light. I squint and stumble down stairs to make dinner and clean bottles and settle into work. But I carry a calmness with me, a quietness that was not there before.

Someday, I will go back to the candle-lit class. I will enjoy the energy of being in a room with others practicing. I will see what my mind and body do when I have an hour just for me. But for now, this is my new meditation.

Saturday, October 10, 2009


Kathleen was pulling books of a shelf today, and I saw one I hadn't seen in a while, one that came as a gift soon after she was born, one that made me cry. Just looking at it, I felt my tears welling up. Kathleen looked at me and laughed, and I smiled back.

Then, instead of putting the book back on the shelf, I opened it and read it. And then I did cry. It is a lovely little book called Someday. It begins with a mother talking to her small child, telling him or her about how she counted their toes when they were a baby. It tells things the she has done with the child and then moves into the things she will watch her child will do someday.

I cried for Henry and his lost somedays, for all the things he will never do, all the things I will never watch him do. And I cried in wonder at the potential there in front of me on the floor, for all Kathleen's somedays, for all the things I hope the see her do. For all the somedays that seem to be every day right now as she is changing so fast.

The heaviness of those tears is lingering with me tonight as I think of the somedays lost, but I smile with those tears thinking of the somedays yet to be. Ah, this endless tangle of sweet and bitter.

Friday, October 9, 2009

In Good Times and Bad

Yesterday, Brian and I celebrated our fourth anniversary.

It was a quiet, brief celebration at the end of a busy day for both of us. In years past, we might have cooked dinner together, but this year I shopped and marinated and chopped. He grilled and steamed and cleaned up the kitchen. We finally sat down together to surf and turf and local potatoes and broccoli from our own garden. Then we both went back to work. Just before bed, we reconvened for warm apple crisp with vanilla ice cream and a peach lambic toast. The lambic is our special drink, the one he brought to a mountain top when he proposed, the one the restaurant brought in special for us to toast with at our wedding.

Four years. Somebody asked Brian how long we had been married, and he said "Four years, but it feels like longer." Living a lifetime in seven months will do that.
Shortly before Henry died, when I think I knew but could not quite yet admit that I knew Henry was going to die, the priest from Brian's parents' church came to pray with us. He did not ask for Henry to be saved, for him to live, not that I remember. He did ask that Brian and I lean toward each other and not away from each other.
When you have a child born with a disability or health issue, people like to cite divorce statistics. I'm not sure why. Should we be on guard? Should we just give in to the inevitable? What they didn't realize was that statistics no longer meant a thing. We got on the wrong side of the odds. There was no comfort in them, but also no fear.
For our first anniversary, we had dinner at the restaurant where we had our wedding reception. Brian even made a reservation for the specific table where we sat on that special day. No lambic toast that night, though. I was already pregnant with Henry.

For our second anniversary, we had Thai food in a crowded restaurant in Boston, within walking distance from the hospital. We could not have imagined on that rainy, rainy day in October 2005, that we would be living on opposite sides of the state on our second anniversary—me in Boston with Henry, him at home in Western Mass. But there we were. Brian brought a lambic with him, but I think I wasn't in the mood to drink it.

For our third anniversary, we were 10 months out from Henry's death, still raw and tired and sad.  I was pregnant with Kathleen and had just been diagnosed with gestational diabetes. No bread, no dessert, no lambic.

And now, here we are. Almost two years since Henry died. Almost a year since Kathleen was born. Four full years since we said "I do."
We are still here. Still together. Still working on the in good times and bad. Still that other side of the statistic. Still loving, still happy despite the deep sorrow.

Tuesday, October 6, 2009


If you don't read Literary Mama, you may want to check out their current poetry, where "poet-mamas make poems out of grief." This is not the first time I've read poetry of loss there, but it still surprises me to find it.

So fast

After Henry died, everything slowed down—my brain, my body, the world. Or maybe the world didn't slow down so much, but I just wasn't much in it. Now everything feels a-whirl. 

Each night I turn off the computer, get into bed and my brain starts writing the things I meant to say here, the email I meant to write to another babylost mama, or my grieving friend, or the women who supported me throughout my pregnancy with Kathleen. I just didn't get to those things throughout the day and if I thought of them at night I thought better of it, for that girl is likely to wake up 2 minutes after I lie down or 20 minutes or 2 hours. And then I will be up settling her or snugging her into bed with me. i will be tired in the morning and she will climb on me, scratch at my face making happy sounds all the while until we get up and begin our day. I will yawn but I will also smile at her laughter. 

She is changing so fast. 

Each day she is different. A new tooth. Pulling a toy off the shelf. Moving, moving, moving. She is not quite crawling yet, but she is so close. She moves herself backward. She sits up, lies down, rotates herself on her bum. She creeps on her belly and gets up on hands and knees. And any moment she will figure out how to move one knee and then one hand and then the other knee and the other hand and she will be off and running.

I packed away more clothes today and pulled out the 9-12 month clothes, the ones that seemed so big, the ones I couldn't imagine her ever wearing. You will forgive this failure of imagination because the last time I looked at 9-12 month clothes they were never worn. 

So big, so fast. 

I want to slow it all down, really capture all this. But the world picks up its pace. There is work and laundry and grocery shopping and cooking dinner. There is an untended garden that needs weeding and final picking. There are friends to visit, outings to take. It is so easy to go out, so we do. 

My world, which for so long was so slow, is swirling faster and faster, and I'm along for the ride. 

Now, to bed that I might be alert to the wonders tomorrow will bring.