Thursday, December 31, 2009

Taking stock

I'm not one for making New Year's resolutions, but I do pause at the end of the year to take stock, to figure out what is working in my life and what's not, what I like and what I want to change. 

So where am I at the end of 2009? What do I want to change going into 2010? 

I have loved watching Kathleen grow and change this past year. I look at her baby pictures and wonder that it was just a year ago she was born. She is so fun right now, cruising around on the verge of walking, taking note of everything around her, figuring out how things work. I'm looking forward to exploring this world with her in the coming year, seeing things through fresh eyes. There will be walks in the snow and sugar shacks, gardening and the beach, crunching leaves and pumpkins, and eventually another birthday. It will come sooner than I think. 

I continue to miss Henry, to accept over and over again that he is gone. Through much of the year, I thought I was doing well with this grieving life. I thought I had made progress. I have made progress. But I forget that this is not a linear process, that I slide back and forth, wend round and round. Some days are good, some are hard. It will keep going this way, like it or not. I'd like to change this part of my life. I'd like to make peace with this loss and not struggle so with it, but this isn't one of those things I have control over. But I will continue to work at making peace with the memories, finding the good buried under the rubble of bad memories and holding onto the joy and hope behind the sorrow. 

And I'm busy. Finding quiet, finding time to rest and think and write is hard, so I'll wrap up now. 

Wishing you peace and joy in the new year. 

Tuesday, December 22, 2009

How it hits

Two years ago today a buried a baby, my son, my love, my Henry.
And yet this morning I got up with my baby girl, ate breakfast, laughed, played.
I wrote Christmas cards and packed up gifts. 
It was any other day.

At 9:15 I was out the door for Christmas shopping.
A stop at the post-office, a package dropped off at a friends house.
The first strip of stores, running through my list, waiting in lines,
Gathering the things I was looking for.

It was the bank that did me in.
I went to the drive through, sent my request up through a tube
I was starting to tire of my errands and was staring blankly across two lanes of cars,
There in the window. Today is December 22.

The 22 was so big. My baby was so small.
We had four pall bearers, which was perhaps overkill.
Two grandfathers, his godfather, and my uncle (who knows too what it is to bury a son)
And his grandmothers read the eulogy that I wrote.

Today is December 22.
My chest tightened and my arms and legs got both heavy and light:
almost too much to lift and yet feeling as if they might float right off my body.
This is how it happens for me. How it comes on.

I thought about heading right home.
Lying on the bed, wrapped in his blanket. Retreating yet again
But there are nieces and nephews who deserve something to open on Thursday night
So I pressed on, but my steps were heavier, my mind distracted.

I buried my baby today. Two short and endless years ago.
I was rushing on the way home.
I had been gone longer than I expected. There was traffic when I just wanted to get back.
And I drove right by the cemetery.

The cemetery where two years ago I buried my baby.
Drove right by, distracted by the falling down house that is finally being torn down.
I didn't stop, didn't look to see if the wreath I left on the 17th was still there.
Didn't even throw out an I love you, I miss you as I passed.

But I know he is there underneath the snow
Too close to the road, still unmarked with stone. He is there whether I look or not
And yet he is not really there at all, and he doesn't care if I stop or wave or leave trinkets.
But I wish I had stopped, just for a moment and left my handprint in the snow ever him.

Two years ago I buried my baby boy.
I know this, have known this, will always know this.
And yet still it hits me suddenly, unexpectedly, this reminder of what I cannot forget,
what I carry with me always. It hits me and leaves me drained.

Saturday, December 19, 2009

Light in the darkness

My neighbors stopped by today to drop off their Christmas card. In it they wrote:
One of the mysteries of Christmas is how grace, like light, shines in the darkness, and the darkness does not overcome it.
This image has been walking around with me today. I see candles, small and flickering, but a beacon still in the dark.

And this reminds me of the way I hold joy and sorrow. Joy, pure and shining, warding off the dark and still of itself. Sorrow pushed back some by the joy but still present, still surrounding. They touch each other, yet don't destroy each other.

Thank you all for being a light in my darkness especially during these last few days.

Thursday, December 17, 2009


Two years ago today, already and only, we said good-bye to Henry. 

Henry in October, days before we almost got discharged from his long hospitalization for the first time. He was so awake and alert and interactive this day. I remember his smiles and little noises and how intrigued he was with this little caterpillar. I had such hope and expectation for my boy.  

All month, I have been wanting to just sit, to be quiet, to have time to think or the space to not think, and it hasn't happened. But today, I gave myself that gift. I took the day off from work. I didn't hop on the computer first thing in the morning as I usually do. I didn't plan or try to do anything. When Kathleen napped, I rested on the couch, remembering lying there with Henry on sticky summer days. I remembered how perfectly he fit on my chest, how our breathing would slow together. I remembered how as he got bigger, he wouldn't just lie there anymore. I smiled at the effort he made to raise his head, the only time he liked tummy time. I rested while I could with these memories, the peace of those moments settling with me briefly. 

And when Kathleen got up, I played and I snuggled with the baby here with me. I smiled and I laughed with her. And I cried too. Cried in amazement and thanks for all she is and does. Cried with anger and sadness for all Henry never got to be and do. And yet he was and did so much. He is still so much; he's just not here. 

Brian and I went to the cemetery, standing briefly, huddled together in the bitter cold and blinding sunlight on the icy snow covering his grave. There was nothing to do there but leave the little heart shaped wreath I brought, let sobs wrack through me, hug Brian tight, and nod that it was okay for us to go, get in the car, get out of the cold. I felt so much the need to go to the cemetery today, and yet there I felt helpless and didn't know what to do. 

Tonight with dinner, I listened to his CD, filled with memories of sitting in the weeks before his surgery, tears streaming down my face, worried, worried, worried, despite what the song told me, worried that every little thing would not be alright. It's strange looking back on those fears. I was so anxious, and yet I never really imagined or believed that I might end up where I am. 

But here we are. 

I knew Henry had not been forgotten. I knew that Brian and I had been in people's minds and hearts during this dark month. Still, I have felt lonelier in my grief this month than ever before. But there were notes, emails, flowers, calls to let me know that truly we are remembered, Henry is remembered, and that we are all much loved. 

Wednesday, December 16, 2009

The day before

As I was getting Kathleen ready to go to her 1 year checkup this morning, I realized that two years ago we were getting Henry ready to go to the pediatrician too. Hers was a scheduled visit, planned months ago. His was a nervewracking, maybe we should have gone to the ER the night before but I was too scared to take him in kind of affair.

Last year, I revisited, relived, processed, and otherwise dealt with all of the things I went through with Henry during his brief, intense life. All except the very end.

I don't like to remember the last night we had Henry home. He got sick so very quickly. Earlier in the day, the visiting nurse had been by. Henry was looking good. Heart sounded good, lungs sounded good, no fever . . . by 10 PM he had a fever. I gave him Tylenol. Then he started throwing up. I stopped his feeding pump. Then he got diarrhea. We changed the crib. We changed his pjs. Again and again and again. And then we gave up and just tried to keep up with a clean diaper.

This perhaps would have been a good time to go to the ER. I couldn't do it. I was paralyzed by what he germs might pick up there. I was paralyzed by the idea of going back to a hospital less than 48 hours after being discharged from a 3 month and 3 day stay. I was exhausted and overwhelmed and I couldn't do it.

I called the pediatrician. I called the nurses at Children's. I had the pediatricians and one of the Fellows at Children's talk. We agreed I'd give him ibuprofen for his fever and bring him to the pediatrician first thing in the morning.

He had a fever.

This is what bothers me. I knew, had seen too many times, how a fever affected him. How his heart rate went up and everything fell apart from there. It was one of the things I expected to have to argue with doctors and nurses about. I expect them to tell me his fever wasn't that high, it wasn't that big a deal. It is for my son, I'd have to explain. But I didn't. He had a fever and all I could think was We just got home; I can't go back to the hospital. 

The next morning it was snowing, but we got out and down the road to the pediatrician. This time when they wanted us to go to the hospital, I agreed, resigned, to go for tests: EKG, echo . . . As we drove, the snow got heavier and Henry's breathing deteriorated. I was sitting in the back with him and I just watched as each breath became more labored. I could do nothing. The highway was down to 40 mph; we were going 70 passing state troopers.
In the ER, they struggled for a long time to get a line in him. They were going to move him up to the PICU, but suddenly didn't like the looks of him, didn't want to move him anywhere. They pulled out what looked like a drill and got immediate access in his leg. That's new. Haven't seen that before, I thought.
The bearded doctor came out to tell me they had him on a ventilator. I started to cry.
It's just what he needs right now, he told me.
It's two weeks minimum to get him off it, I thought. I still believed he would make it. I still dreaded another hospitalization. It seems funny now—and not.
Sometime that night—time was a blur—Brian's mom suggested we go and get some rest. We had not slept in over 24 hours, and the night before that had been punctuated with a relentless med schedule, and the night before that spent sleeping upright in a straightbacked chair or on the hospital floor. She stayed with him. We went home and packed some things for our return. We had been in bed for less than a hour when the phone rang. How long does your heart stop when your baby is in the hospital and the phone rings late at night?
Back at the hospital in the parent waiting area, we tried to sleep. Brian woke me up in the wee hours of the morning. He had what Henry had. He was spent, weak, wrung out. I called his parents to pick him up. And I waited.

I didn't know it would be the last day.
I don't think about that last night at home with Henry or even that last night of back and forth between home and the hospital.

Mostly I remember that he came home. He did not die in Boston. He made it home. We carried him through the kitchen door where we brought him home as a newborn. We put him back in his swing and watched him noticing the mirror above it. We all slept in this house that we call home for one night.

It always feels like one of Henry's little gifts to me that he made it home. Not for long, no, not nearly long enough, but he got here. And that means so much to me.

Sunday, December 13, 2009

Not unhappy

Despite the sorrow, the sadness, the struggle that seems to be much (all) I talk about of late, I am not unhappy with my life. I am blessed with a close family that I love and love spending time with. I have a beautiful baby girl who makes me smile every day. I have friends who have helped me through the hardest time in my life. I have a comfortable home in an close-knit neighborhood. I mostly enjoy the work I do each day. I know who I am again and I'm comfortable with me.

I miss Henry deeply, desperately.  I am so sad he isn't here. But. I am not unhappy. As I sit tonight, even as I long for him to be here, I'm sitting with some kind of contentment with my life, something that wasn't here last year, something that gives me a little of the hope I thought I had lost to despair in this month of December.

Thank you to all who have sent your support to me in this dark month. It's funny what a big difference a few little words make.

Saturday, December 12, 2009

Two candles

We had a small party for Kathleen today, and two candles were lit:
the one on the cake that remained lit for only a moment or two,
to mark the life that has lasted a year and is still going strong,
and the one on the table that stayed lit all day,
that still flickers in the next room
to mark the life that didn't make it a full year, the one I still miss.
One birthday, two candles.
Two babies, much love.
And I continue to teeter between this awe and wonder and amazement
that she is here and strong and laughing and moving and learning
and the despair that he is not.
Among family and friends, I was able to smile much today,
to feel the joy,
but in the letdown of people leaving and a quiet house almost put back in order,
I find the ache growing.
So aware of and thankful for what I have.
So aware of and missing what I don't.

I am holding onto the belief that this will get easier again,
that this dark month will pass and heaviness will lessen.
The sadness will still be there.
I will still miss my boy,
but in the day to day I will get by.
I will see the light again;
tears will not be a daily event.
For this I am holding onto hope,
because I need to believe it.

Friday, December 11, 2009

One Year

One year ago today this tiny girl entered my world.

Her first birthday feel like it has been more than a year in the making and yet wasn't it just yesterday she was perched like this on my chest?

Happy birthday, Kathleen.
Happy birthday, my baby girl, my light, my joy.

Sunday, December 6, 2009


I find myself craving quiet and time to sit and just be. And I don't have it. When Kathleen's up I'm a-going with her. And when she sleeps I work. But tonight, I'm taking a break, because I need it, because my brain is useless. I'm sitting in my chair in the living room—the chair I sat in with Henry, the chair I sat in with Kathleen, the chair I have sat in very little over the past several months. I'm sitting in the gentle glow of Henry's lamp and the candle I lit for him. 

The candle was a gift from my cousin's mother-in-law. I see her at Thanksgiving, but don't know her particularly well. But she bought be this candle, a white candle in a little jar, for me to light for Henry. She gave me one last year and another this year. I like having a candle just for Henry. I'm touched by her gesture. 

So I have his candle lit in front of his picture:

and I'm sitting and trying to deal with these waves that keep coming over me. Two years . . . two years . . . two years . . .  

I find my self close to or in tears often these days. It has not been like this for a while. I had forgotten how the waves could sweep over me, again and again and again. How the tears well up and subside and well up some more. How it feels to be teetering on the edge of holding it together. 

I had been doing okay. And then December. 

Wednesday, December 2, 2009


We are two days into December and I already I can feel it. There is a darkness to this month that has nothing to do with our winter short days. There is a weight that drags along with me. 

December 17 looms ahead. It will be two years. Two years since Henry left us.

But in this darkness, my light—Kathleen turns one. Her smile dimpled, different than her brother's, adds brightness. Her laugh makes me smile—even in this dark month.

I have been holding deep sorrow and great joy together, give each its due, knowing that each can stand on its own without muddying the other, but this month tests me.

December, my time to weep and my time to laugh; my time to mourn and my time to dance.

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.

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. 

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.

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