Sunday, August 30, 2009

An Unexpected Remembrance

As we were getting ready to leave church this afternoon, the woman in the pew in front of us turned and asked when Kathleen was born. I said simply December. She said, "On the eleventh?" and I nodded. "It's my sons' birthday, too, that's how I remembered."

"And you had a little boy, too. Henry."

I started, surprised, "Yes, we do."

She told us she had been there the Monday night before his surgery, when we had, at the suggestion of our priest, brought Henry to the church for the St. Jude novena mass. Father Dariusz had offered a special blessing over Henry and people had prayed for him. Barbara, she later introduced herself, had been one of them.

It made my heart sing to hear my baby boy mentioned, spoken of comfortably, with caring.

I don't know why it always surprises me when people outside of my close family and friends mention him. I have wasted a lot of energy worrying if people know about him, if they will mention him or ignore him, how I will speak of him. So when he is just there, in conversation, in thought and heart, it amazes me.

Sometimes talking about him seems so hard.

"And you have a son, Henry."
"Yes, we do."

It's that simple.

My sweet boy, you are not forgotten, not by us, not by so many others, people we don't even know that your life touched.

Friday, August 28, 2009

This Lovely Life

This morning Kathleen woke up early. I fed her, changed her, and handed her to Brian while I made coffee. And she fell back asleep. The house was wonderfully quiet, and I sat at the kitchen table with my coffee and warm muffins and finished reading Vicki Forman's This Lovely Life. I almost got online right away to tell you to go get a copy and read it, but I need to sit with it for a bit.

So here I am, some 12+ hours later telling you to get a copy and read it. It is not easy reading: I made myself read something else for a few nights, though I wanted to continue, because my mind and emotions got worked up and I couldn't sleep. Vicki's experience was far from my own, but her descriptions brought me back to the hospital, to the fearful days at home of oxygen and complex med schedules, to a world where "okay" and "normal" shifts each time you think you almost have your footing in the new world.

Before I started reading This Lovely Life I expected a book about parenting a child with a disability. I knew Vicki's son, Evan, had special needs and that Vicki had written on the subject elsewhere. The subtitle of the book, A Memoir of Premature Motherhood, gave me a different expectation. And then I started reading this book about being a mother and about figuring out what that means when you don't get the expected 9 months = healthy baby scenario. I read about a journey from grief to self-forgiveness, from the nightmare of this can't be happening to the still challenging and heartbreaking, but lovely, life.

You can read more about the book here.

Tuesday, August 25, 2009

Honest Scrap

Cait's Mom at A Fifth Season chose me for the Honest Scrap award. I'd pick her back if I could. Her comments on "everything happens for a reason" and on Down syndrome being only two reasons why.

The rules are:
Choose a minimum of 7 blogs you find brilliant in content or design. Show the 7 winners’ names and links on your blog, and leave a comment informing them that they have won the Honest Scrap award.

Here are my 7 (comments to come):
Cover Her Briefness in Singing
Demeter's Feet
Ezra's Space
Happy Sad Mama
I Lost a World
Surviving the Day
Tuesday's Hope

List at least 10 honest things about yourself
  1. The first thing you should know is that I'm terrible at things like this because I overanalyze the task/question. To be honest, does it have to be deep or important or can it simply be a statement of fact? Does it mean things nobody knows about me? Should they be things I don't like to admit? That said, here are my other nine.
  2. Before Henry got sick and everyone kept telling me how strong I was, I kind of liked thinking of myself as a strong person. I learned that having your strength tested sucks. Whether or not I was strong, I didn't want to have to be strong.
  3. I have toe thumbs.
  4. I hate being shy. I've gotten better, but I still struggle with it.
  5. When my yoga teacher said repeatedly, "Yoga can change your life," during my first ever class years ago, I rolled my eyes. But it did, and I miss it.
  6. Lately I love running, or to be fully honest, I love the me time running affords me and knowing I'm getting in shape and the way I feel after a run.
  7. The ocean is in my blood, and if I go too long without being near it, I get off balance.
  8. I can get very grumpy, downright mean, when I'm hungry.
  9. I often think of Henry's life in terms of my garden. He was born just after our last planting. We were able to pick lettuce when we brought him home. He sat in the stroller while we picked strawberries. My mother-in-law babysat while I picked blueberries. I made peach jam with my neighbor while waiting for an Early Intervention visit. He was in the hospital for most of tomatoes and all of squash and leaf raking. This is how I mark time.
  10. I am slowly starting to find out what is happening in my friends' lives after two years of focusing on my baby or my grief.

Sunday, August 23, 2009


Henry remembered
On the way in to church this morning, a woman coming out stopped to see how big Kathleen was getting. "And I'm sure big brother Henry is watching over her," she said.

Welling up
For a long time, I couldn't go to church without crying. For almost a year, I cried every time I went to mass—and on the rare occasion I didn't, Brian did. Sometimes it was a song, or the sight of the baptismal font, or seeing another baby, or the flash of memory of his tiny coffin in the center aisle. . .

Since Kathleen's arrival, I have not cried as often in church. She is a distraction, from the mass itself and from the things that make me cry. But today, I sobbed. I have no idea why. I was holding Kathleen, her heavy body, sticky and sweaty. She slumped against me in a nap. And I started crying.

Most days, I do okay. Most times I can identify the trigger the sets me off, but sometimes the sorrow, the tears just well up from so deep within and erupt out of no where.

A Prayer
I offer up this girl,
with her s
her strength
her health.

I offer her up
in awe and wonder,
praise and gratitude.
I offer her up

with this plea:
Please, let her stay here with me.

Let her stay healthy.
Let her stay happy.
Let her stay.

Friday, August 21, 2009

Two Years Ago

Two years ago today, Henry had the hole in his heart fixed.

This is us just before they took him into surgery. I love this picture, though I often think I'm smiling too broadly for a mom whose baby is going under the knife. I was nervous and oh, so hopeful too. We thought this was a new beginning for him.

After a week in the hospital, we had two glorious weeks—Henry's golden age. No oxygen, no impending surgery, a fresh start. It just didn't last. But I didn't know that then. Here in this picture, I think the rocky start is about to end. I think things are about to get easy, "normal." I have no idea what is ahead.

Two years ago, today, Henry had the hole in his heart fixed. Two years ago today, my heart was still whole.

Henry's Garden

From top to bottom:
  • Henry's cousins made the Henry's Garden sign for his first birthday. The hand is his hand that I traced for Thanksgiving a few weeks before he died.
  • This angel was a wedding gift from Brian's sister. We found the stone heart at the beach when I was up visiting my family.
  • Red dahlia and turtle
  • The red dahlias are from a friend who has a little girl two weeks older than Henry. I asked her for something red (Henry's color) from her garden, and this is what I got. This first one was in bloom when we got back from vacation. I love it.
  • The turtle with three little red birds is a souvenir from our vacation. The store we got it from features the work of developmentally disabled adults who work at an on-site pottery and weaving workshop. My mom had been planning to get me a new plant for Henry's garden, but got this instead.
  • Our second angel was a gift from one of our grief group friends. She gave them out in honor of the first anniversary of her son's death.

Wednesday, August 19, 2009

A Reaction and a Response

Yesterday I was talking to my friend Amy about sharing news even when it is hard to here. We talked about how it was hard for me when she had her third baby in March 2008, three months after Henry died. She remembered calling to tell me she had had the baby, she remembered me saying congratulations, and then tears. And her telling of that moment put me back there in that swimming place of happiness for another, relief, but mostly sadness and jealousy. I remember how hard it hit me when she told me, even though I had been expecting it. I remember not being able to speak. And yesterday, for a moment I was plunged back there and tears came again.

Today, I got a message from a friend on Facebook (the one I wrote about here). She apologized for not responding sooner (she's in the middle of a job change and a move). Her response was sincere and thoughtful and acknowledged the breadth of my experience without glossing over Henry with Kathleen. It was a relief to get her response. I had kind of written it off, but I suppose on some level it still bugged me.

Tuesday, August 18, 2009

Vacation Snapshots

We got home Sunday from a week in the White Mountains with my family. It was chaotic and fun, exhausting and wonderful. I laughed a lot, cried a little.

As I packed the car, I couldn't help remembering our vacation last summer. It was just Brian and me and a baby in my belly. There was no car seat, no stopping to give the baby a bottle, no need for diapers or stroller or Pack & Play. Last year in the car on the way to Maine, the empty backseat made me cry. This year, I kept peeking back, reaching back, making sure Kathleen was breathing okay in her new car seat even as her head lolled forward in sleep.
Seven adults + 5 kids five and under + one condo = utter chaos
I stayed up too late every night of vacation. My sisters and I, and some nights my mom, would play games: cribbage, Pictionary, 100,000 Pyramid, Farkle, Taboo . . . and we laughed. We tend to get incredibly silly when we are all together and at some point somebody says, "Stop, I'm gonna wet my pants." I remembered how a few weeks after Henry died, I visited with my family. We played games, and we laughed until we almost peed our pants. For me then, the laughter was simply a release of the stress and the sorrow. I was all cried out. The next day my back and belly hurt from the exertion. I didn't feel guilty for laughing, but I didn't feel happy either. This vacation, I laughed a lot. I laughed hard. And I felt it.

My family took Kathleen for a day so that Brian and I could go for a hike together. The mountain we chose, Mount Tremont, wasn't particularly challenging, but Brian was fighting off a summer cold, we're both out of shape, and it was convenient. And we had tried to climb it before. The last time was on snowshoes, about a month after Henry died. We lost the trail somewhere along the way and decided to turn back. I remember the mountain being cold and bleak and beautiful. I remember me being cold and numb and worn out. (There are no pictures from that winter climb. The first pictures on my camera for 2008 are from March.)
This time all was green and wet. Mushrooms flourished. We saw frogs and snakes. It was sweaty hot. We summited. While we ate lunch, I watched a flock of dragonflies, huge ones as big as my had flitting and drooping about. And I thought of Henry and the other babies I know who have left too soon.


We got home in the early afternoon, so I didn't mind that Henry's lamp was dark. It was after the bustle of unpacking and getting Kathleen to bed, when the house was still, that I sat an missed Henry a little more. Somehow he always feels a little more missing, a little more gone when I come back from being away.
Despite the thread of grieving and Henry throughout these memories, it was not a sad time, mostly. The missing was always there, but not always insistent on being recognized. I enjoyed my baby girl. I loved watching her with her cousins and look forward to the fun she will have with them as she gets a little bigger.

Our first family vacation

Saturday, August 8, 2009


I was awake last night, couldn't sleep, my mind busy with what I needed to do today to get ready for vacation and with thoughts about last years vacation, both what it was and wasn't. Today I muddled through laundry and packing and other preparations. We are finally almost ready. I have a lot on my mind, but I'm too tired to say much. So I'll just say see you soon. And for those of you with significant days in August, I'm thinking of you, even if I'm not able to be in touch for a little while.

Wednesday, August 5, 2009

My Baby Back

I don't know why, but this picture has been hovering in my head for the past few days:
This is Henry in late October 2007, days after he almost died from a PICC line infection. For several days he was in only a diaper and maybe a hospital t-shirt. He was pale and still and lost in a tangle of tubes and wires.

I stepped out one day and came back to this: my baby back. His nurse, Anna, had dressed him, put a quilt and a blanket on his bed, and surrounded him with his stuffed animals. She had arranged his books on a table at the foot of his bed and taped up the cards people had sent us. It made my day. It made it possible for me to go on.

We had been on the verge of going home when Henry turned blue in my arms. He was rushed back to the CICU where he was stabilized. I left the hospital in shock. There was a part of me that night that wanted to let go, to stop being the strong person everyone kept telling me I was, to stop worrying to the point of barely breathing, to stop living in the crazy world I had been plunged into almost two months earlier when my baby was hospitalized suddenly. I remember sitting in his room, silently screaming, "I'm not okay over here," but every body was busy working on my sick baby. I remember later somebody coming over to talk to me, encouraging me to get away and get some rest and agreeing to go. I remember being detached and watching it all from outside of me. And I remember wanting to let go but thinking that if I did I might never find my way back.

That night, that feeling still scares me.

The next night my baby almost died. He teetered between life and death, and I became practical. I begged him to hold on until his daddy arrived. I asked the social worker for rocking chair. I told my sister I needed her sweater because I was cold. I watched and I waited and I was right there, fully there, waiting to see if my baby would live or die. He lived. And I thought we had survived a scare. I thought we had a long road ahead of us and I set out on that road, step by step, sure that my baby could pull through anything now. I never thought the road would lead here.

But in this moment frozen in my mind, my baby was starting to look up. He had come off nitric oxide. They were beginning the long slow wean off the ventilator (again). His color had come back. And a nurse had transformed him from a patient to a baby again.

There is no trigger for this particular memory. I hadn't seen the picture. I didn't recently find the outfit or one of the stuffed animals in the photo. It isn't something that happened two years ago this month. It's simply the piece of Henry's story that I'm sititng with right now.

Saturday, August 1, 2009


I finally got on Facebook. I avoided it for a long time, only because it seemed like it could be a way to waste a lot of time and I don't have enough time as it is. Then in one week, I missed a friend's birth announcement and the fact that another friend had actually sold and moved out of her house (without a new house to move into) and had somebody ask me five days in a row if I was on Facebook yet. I gave in, got on, and kind of liked it. I posted random things I was doing, saw pictures of friends kids, friended a few people.

I decided I didn't need to friend everybody I ever knew who was on Facebook, but there were a couple of people from college who I hadn't talked to in years. I got into a little back and forth with one of them, and she asked about me and I gave a brief summary of the last 15-20 years, including that I had a baby who died. And then I waited.

And I haven't hear from her since. It's been four days.

First thoughts . . . maybe she didn't read it yet. Then . . . maybe she is thinking about how to respond. Now . . . guess that's that.

It makes me wary about telling people. I will keep telling people, but I'll always feel vulnerable once I write it or say it, waiting to see the response—or lack thereof.