The stories of the tree

For as long as I can remember, I have loved Christmas. There was that Christmas when I was thirteen or so, an awkward age, and I lost the magic. But it came back, and I loved Christmas again. Until 2007, when Henry died on the 17th and we buried him on the 22nd and somehow managed to visit with family on the 24th in a blur. 

It wasn't that I hated Christmas after that. I just couldn't do it. Couldn't listen to carols or put up a tree. I stumbled through presents and probably baked cookies, but none shaped like Santa or reindeer or trees. 

I made excuses in the years following: I was tired and pregnant and we'd have a baby two weeks before Christmas; we had a cruiser who would surely just tip the thing over; I was tired and pregnant and we'd have a baby ten days before Christmas. But this was the year, I decided. I'm not pregnant. We have a cruiser who will, given the chance, surely knock the whole thing down. But we also have a little one who is starting to notice and remember and want her to have the magic I had. So, at the bottom of the stairs, behind the makeshift baby gate, we set it up. 

Over the past two days, I decorated. Yesterday it was just the tree and the lights and two ornaments that wound up in the wrong box last year—a cardinal from my aunt and one from Amy, a surprise gift last year. 

Tonight, before Kathleen went to bed, she helped me put a few ornaments on the tree:

This is Henry's heart, and one for Kathleen, and one for Elizabeth. The first year of the Buddy Walk, I used the leftover felt hearts we pinned to our shirts to make ornaments, and then, I made one with Kathleen's name on it too. This year, I added one for Elizabeth. 

People gave these to you your first Christmas, I say of the pink baby carriage and the peas in the pod. 

And then after she went to bed, I added others:

This was from Amy for our wedding. Two become one (and Brian adds, "As often as possible") and this one with the picture of us kissing 

I got this one for a report on Denmark in middle school (a straw star)

Here's the Mount Washington marker ornament. (I wanted Carrigain but they didn't have it.)

Aruba—Did we buy this or did your mom bring it for us? I'm surprised I can't remember how we came to have the little painted glass ball with sand in it, but Brian reminds me we bought it at a little market near the pool.

Oh, Bandit, I sigh at the little dog bone I made of clay and tied up with Christmasy ribbon

And this one's from my fifth grade teacher, I remember as I hang the glass clown with a glass balloon. 

My earliest ornaments, a wooden gingerbread man, a string covered ball with my name and squiggles in glitter, a shiny red ball with my name and birth year, also in glitter

These brass ones are from my friend, Tina, and my friend Erica made this mussel shell angel and hung it around a wine bottle (years and years and years ago).

Cookie party, more cookie party—For years I hosted a cookie party where friends would come over and bring a dough and we'd roll and scoop and bake and decorate. It got a little insane eventually and then fizzled (though we've talked of reinstating it with kids). But from that era, I have gingerbread ornaments and cookies on cookie sheets and rolling pins

Here's the canoe I bought you the year we bought the canoe. And the old wheelbarrow and my watering can.

Here are the snow shoes Amy got us. And the snowshoeing Santa I picked for you one year. 

And your AT ornament.

Brian is trying to read in front of the fire. It used to bother me that he wouldn't help me put up the tree, but this year, I just interrupt him occasionally to point out an ornament and tell him its origins or significance. The rest of the time I tell myself the story of the ornaments, because that is one of my favorite parts of the season. 

In years ahead, I foresee more cardinals and hearts, and I will tell their story too. This is for Henry and I'll tell who made it or where it came from. 

This is the star somebody from Canada made for me the year Elizabeth was born. Nana and Grampy brought the package to me to open in the hospital. 

This is the red bird, this is the heart that somebody sent me from Indiana, the year we had a Christmas tree again. 

Yes, this is my favorite part of decorating—the traditions and the stories and the remembering. 

Your brother Henry

Angie's answering questions about talking with your living children about their lost sibling at Still Life with Circles, and I thought I'd chime in.

Right after Henry died, I worried about how we would keep him as part of our family as our family grew (which I hoped it would). I didn’t worry about explaining what happened to him to other children we might have, but I needed to know that they could somehow accept this person that they never met as part of our family. I was desperate to figure out how to do that. Then I met a mom, a little further down the road, who really seemed to have integrated her daughter into her family, even though, like me her firstborn had died and her other children never met her. I decided it was enough to know that it was possible and that I would find my way once I had another child to hold in my arms, not just my heart.

***

Henry, I lost my orange blanket at Zoey’s house.

I’m not sure why this it the thing that Kathleen chooses to tell Henry, over and over and over. The blanket was lost and found much earlier this summer, but it is what she says to him often, when I do the bedtime routine. 

Brian talks to Henry about praying for our family and others who knew him. I simply ask if she wants to say good night to Henry. If she says yes, I bring down the picture. Sometimes she kisses it, sometimes she says goodnight or I love you or I lost my orange blanket. 

I don’t know how this nightly ritual started, but it is as much a part of the routine as brushing her teeth. I accept that there may come a time when she doesn’t want to say goodnight to Henry or when she wants to do it in some other way. This is about how she interacts with her brother.

***

We had a new babysitter here on Tuesday. While I was getting Elizabeth dressed for the day and Kathleen and H. were playing, I heard Kathleen say, “This is Henry.” I looked out and she was showing her picture blocks with immediate and extended family members, and the first person she decided to show was Henry.

***

I made Kathleen an alphabet book for her first Christmas. Or I intended to. I only completed one page in time for that Christmas. On the H page, I put Henry’s picture in the middle of a big heart. H is for Henry and hearts. Henry is in heaven, but we carry him in our hearts.

***

Brian has lots of photos and little video clips on his iPod. Kathleen likes to watch the video of her going down the slide, but she likes the one of Henry smiling too.

***

In late May, Brian told Kathleen that the next day was Henry’s birthday, and she said I sing “Happy to You” to Henry.

Should we have cake? I asked. But of course. 

I had made cupcakes for his first birthday, the only one we marked with our family, but I hadn’t made cake for him since. This year we had chocolate cake with sour cream frosting, and we sang to him.

***

We have pictures of Henry in almost every room of the house. He’s in Kathleen’s alphabet book and blocks. We have photo albums of him as we do of Kathleen and Elizabeth. We talk about him. We talk about memories and missing him. We tell Kathleen about things that she used that Henry used just as we tell her about things that Elizabeth now uses that she once used. We talk naturally about him, and so far it seems she does too.

People have asked me if I will talk to Kathleen and Elizabeth about Henry. I tell them I already do. I can’t imagine how I would not. 

So we talk about him, but how do we explain what happened? We’ve told Kathleen simply that he died. We have pictures and stories and we love him, but we can’t see him. We tell her he is with Auntie K and Bandit. We will, I suppose, add more as they asks more and understands more. 

I just revisited what I thought about talking to Kathleen about her brother in her first year, early on  and later. We're doing the same things, but they have evolved more into part of our routine now. I worry less about Henry's role in our family. My questions about how he and his siblings will interact evolve too—will they ever resent him? feel like we love him more? how will they share him with their friends as they get older? what will they want to know about him dying, about death, about where he is? Or maybe they'll have completely different questions. We'll talk about them as they come up. We'll continue to talk about our son, their brother. 

Four

He would be four today, that boy of mine. Four years ago, he arrived, a day earlier than expected and nothing really went as expected or planned after that.


I got up early with Elizabeth today. I made coffee, and we listened to You Are My Little Bird. I sat with Elizabeth and danced with her when she needed to move. I cried ever so briefly. I remembered being home and scared with Henry, in the hospital and hopeful. I haven't listened to our morning music in a long time. I've missed it.

I had decided last night that I would make fried egg sandwiches for breakfast, because it's what Brian and I had the morning Henry was born. I know this only because I wasn't supposed to eat. I was supposed to have a planned c-section on May 30. Late on May 28, I started spotting. In the wee hours of May 29, I started having contractions, far apart, but growing closer. My OB suggested I come in and be monitored at 8 before my first appointment (I was supposed to be back and forth between the hospital and my doctor's office all morning). When Brian suggested fried egg sandwiches for breakfast, part of me was pretty sure I was having a baby that day and I knew I wasn't supposed to eat before surgery. But, I argued to myself, my doctor hadn't told me not to eat, and if we stayed on schedule I wouldn't get a chance to eat for quite a while. So I ate the fried egg sandwich, and a few hours later we decided that, yes, I should have the baby that day.

We had cake with Kathleen after lunch. A few days ago when we told her Henry's birthday was coming up she said, "I sing 'Happy to You' to Henry." I asked if we should have cake, and she said yes.

My plan, the one thing I really wanted for the day, was to work in Henry's garden. And I did. For hours. I got it all cleaned up, soil loosened, compost in. I planted the dahlias from my friend who manages to dig hers up and not kill them. I planted the delphinium and rosemary I bought for Henry's birthday this year. I moved the pinwheels and flags and stones and sign. I was sweaty and tired afterward—and peaceful. Friends brought by some flowers to plant and I tucked those in around the dahlias where the dirt looked too bare and I had been feeling like it needed something.

I like the physicality of digging, the nurturing and caring. (For my shower when I was pregnant with Henry we had wildflower seeds as a favor. When Henry was in the hospital, my aunt told me she would go work in her Henry garden and feel in a way as if she were caring for him.) I like the space to let my mind wander (to think and remember him or to just be quiet). And I like getting something for his garden each year. It takes the pressure off the idea of a gift; I simply know I will get something for his garden each May.

It was perhaps the most comfortable, peaceful birthday we've had yet. I like to think that I've just gotten to a point where they are easier or that it was because I had a plan and followed through with it, but really it was probably just a good year.

Happy birthday, my sweet boy. I wish as always you were here. What would you be like at four?

Today

Today I ran almost three miles
and loved the cool air and the warm sun.

Today I smelled the lilacs, suddenly in bloom
and thought of Charlotte and her mama.

Today I dug in the garden, trading tools with Kathleen
and enjoyed working with her, even if I could have gotten more done alone.

Today I stopped to blow bubbles with Kathleen
and remembered Hudson and her mama and how one year felt.

Today I noticed how big Elizabeth is getting
and how her face is filling out—almost five months!

Today I looked out the window and saw the blue forget-me-nots under Henry's tree
and did not forget and still thought "What a good day."

Thanksgiving

Each Thanksgiving, I stand there again in the hallway right outside Henry's room. Ready to go to Thanksgiving dinner, eager to see my family, filled with guilt about leaving Henry. He doesn't know it is a holiday, that he should be seeing his cousins and grandparents and wearing a pilgrim hat. I'm standing there talking to Magie's mom, admiring her coat, talking about how we won't count this Thanksgiving, how next year will be the "first" Thanksgiving for both our babies. We were so sure they would both be home to celebrate the next year.

Neither of them made it to Christmas.

I'm thankful for many things. I don't spend all day stuck on this memory. I don't only lament what I don't have. I do give thanks. Henry taught me that. I was perhaps my most grateful when he was in the hospital, when we didn't know what was wrong with him, when every day seemed bleak and improvements seemed miniscule and setbacks huge. Each night I prayed for him, and I always began with thanks—thanks for another day, for better sats, being one step closer to extubation, a card in the mail, an email, open eyes, a smile.

It is easier when the daily challenges are more mundane to forget about the little reasons for thanks. Perhaps because nothing is all that bad, nothing is all that great. I like to think I am more aware of the small joys and blessings around me. Maybe. Most days.

Kathleen woke up too early this morning. She was cranky all day, throwing tantrums off and on. And yet, I was thankful.

I was thankful to sit with her,
to hold her,
to read to her,
to kiss her head,
to have her shout, "Bye! Ta ta! Cheerio!" as I tucked her in for the night.

I'm thankful for a warm home,
a comfortable bed,
and a full belly.

I'm thankful to have work that I (mostly) like,
and for three days off,
and for a break from that work starting a week and half from now.

I'm thankful for the blue skies today,
the November chill,
and the smell of smoke in the air.

I'm thankful for a close-knit neighborhood,
friends near and far,
and the amazing people I've met because of Henry.

I'm thankful for Thanksgiving traditions, 

for two families that I will happy to see tomorrow, 

for family that acknowledges the missing among us. 

I'm thankful for my baby boy whose smile still warms me,
for my baby girl who amazes me with something new every day,
and for the baby I have yet to meet.

I'm thankful I'm not standing outside that hospital room this year,
thankful for having survived year one and year two,
thankful to feel the sharp edges of grief softening, slowly, yes, but softening still.


Thank you for reading here,
for bearing witness,
for supporting me on this journey.

Falling

I'm falling
or falling apart.
these last two days.

An ambulance, lights and siren on, on a certain stretch of road—it is the route we traveled, Henry and I, that day in September. Seeing the ambulance, I am not there, not in the back with Henry and the oxygen and my bag jammed under my feet. I'm not there, but the terror grips my heart for a moment and I cry out.

State-insurance paperwork, poorly worded confusing questions, like the reams I filled out to get Henry enrolled in services when he was in the hospital. It took me a month or more. I was thick-headed, uncertain about how to fill out to forms. When is says you does it mean me or him? Here it means you. There it is him. Pages to determine what he can do or can't do. Dress himself, feed himself, walk, speak . . . he's 6 months old. I don't know the numbers, don't have the paperwork I need. I went back to the financial aid office again and again and again. He was finally approved. The letter was sent the day he died. Today I filled out some of the same paperwork to get assistance with our insurance premiums. All that came flooding back with a stack of paper today.

Last night, Kathleen woke and would not settle. I rocked and rocked her. She would almost fall asleep and then jerk herself up. She grabbed hold of my pajamas. "You can let go," I told her, wanting her to give in to the sleep she so needed. But I have said those words before, and the memory gripped me. And I spiraled down, down, down.

I said those words in October 2007, the night we thought Henry might die. I looked at his pale little body, laid out under the lights, covered with more tube and wires and equipment than I had seen even right after his surgery. He had already been through so much. "If you've had enough, you can let go. You can stop." Did I mean it? I wanted him to go if he was ready, not wait for me, for I would never really be ready, no matter what I told him. "You can let go. But please, wait until Daddy gets here." And he did. Brian arrived, my sisters, my in-laws, my parents were already there. They set aside a room for our family to wait in. Henry started to look just a wee bit pinker. His numbers looked better. To hear my mom tell the story now, she was foolish to call and worry everyone. But he almost died that night. He did, and I tried to let him go if he needed to.

In December I said it again as I felt him slipping from me, as I sang to him the names of all the people who loved him, I was trying so hard to hold on to him. My mom heard my singing, but didn't understand. "I can't hear you. I don't know what you are saying." And I shushed her away, my song the last thread between me and my baby.

Twice I told my baby he could let go, he could go, he could be free from all his little body had put him through.
Twice I tried to mean it, but couldn't really.
You can let go.

He finally did.
And then I had to.
Had to let go.
Let go of the thread of song.
Let go eventually of his body.
And now I struggle:
How do I hold on to him and let him go at the same time?

I'm falling apart
falling into deep waters, flailing, drowning.
Just two days ago, I wrote to Sally about healing.
Just over a week ago, I wrote of the lifting that came with the passing of December.
And today, I sat on my kitchen floor and wept.
I sat and could do nothing else.

And now, I have pulled the pieces together again
and I sit with the drained, weary feeling that comes
after the sobbing and the memories.
And I wonder if the sun will shine tomorrow
or if I'll fall a little more.

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

Flashback

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.

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.

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.

Sunday

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 smiles
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.
Please.

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.

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.

Love Like an Ocean

I got back yesterday from a few days visiting my parents. I grew up on the coast, spending every weekday at the beach every summer of my childhood. It wasn't until I grew up and moved away that I realized just how lucky I was. The ocean soothes me, calms me, sets me straight. If I go too long without seeing it, smelling it, feeling its rhythm, I get out of balance. So it was good to be there.

We went to the beach each of the three full days I was there and I soaked it all up. I played cold in the water with my nieces. I found periwinkles and crab shells and feathers with them. I ate sandy sandwiches with lemonade. And I walked with Kathleen up and down the beach when she got fussy. I thought about last year on the 4th of July when I walked up and down the beach with my cousin's baby girl, just a tiny two-month-old bundle, how she nestled into me and fell asleep to the sound of the waves, and how I felt the need to hold her and walk with her, but how it made me cry because I hadn't had the chance to walk like that with my baby. Henry never made it to the beach, though he heard about the ocean from me so much. Walking with my cousin's baby last year was a reminder of so much that had never been and never would be. Walking with Kathleen this year reminded me of that too, but also of what is and what is yet to be. In summers to come she will play in the sand and the sea, she'll take walks with her grampy and make sand castles with her nana. The tides will continue to flow in and out. The ocean will continue to stretch out its endless blue expanse. And my love will swell like the waves and stretch beyond where you can see for Henry and for Kathleen.

***

Henry out and about:

• At dinner while I was visiting my family, my brother-in-law commented that he thought Kathleen looked a lot like Henry. I see it sometimes, certain expressions. A bit later, my niece said, "I miss Henry." I told her I missed him too. "But," she said, brightening, "now you have Kakaleen." From a grown-up, this would have bothered me, but from a five-year-old, I accept her thought process, her attempt to sort it all out.
• My cousin told me about his bird feeder and how a cardinal came and sat with them for a while last week.
  
• Last night at dinner, our friend's daughter wanted her dad to read to her. The book she picked was Hello, Henry. They had gone to the dump on Henry's birthday and visited the book discard area, where they found half a dozen Henry books, including this one, one of their daughter's current favorites.

***

Fourth of July

Kathleen 2009






Henry 2007

Bits and Pieces

There is a school bus stop outside my house. If Kathleen isn't in an early nap (or strangely still asleep), we go out and say hello to our neighbors. Today was the last day of school, and as I stood holding Kathleen watching Meg get on the bus for the last day of first grade, I remembered holding Henry watching a younger, much more tentative Meg get on the bus for the first time on the second day of kindergarten. And I smiled, a bit wistfully, but I smiled.

***
Wednesday I made jam. Strawberry, strawberry rhubarb and a batch of double strawberry rhubarb. The pectin I use doesn't specify amounts for strawberry rhubarb, but I knew I had the recipe on a little scrap of paper somewhere. I sifted through my recipe box and a pile of papers tucked into my jam book—and there it was. I dropped it, and picking it up realized it was written on the back of an appointment card, one of Henry's pediatrician visits. I took a deep breath. I sighed. And that was all. It didn't break me. Not that day.

***
On Tuesday night, we went to a regular potluck dinner hosted by friends, the potluck where two other bellies grew large at the same time mine did when I was pregnant with Henry, the potluck where we went numbly after Henry died. It has gotten easier over time to be there, to see the other spring 2007 babies, but there are still twinges. But this Tuesday, Zoey, who adores Kathleen, wanted to see her as I was feeding her in the high chair, so I scooped her up on to my lap. And it struck me. This should be Kathleen's little brother on my lap, this child of just the right age. But again, it was strange, rather than crushing.

***
Earlier, or perhaps still now on a different day, any one of these things could have flattened me, reduced me to a sobbing heap, wiped me out, left me useless for the rest of the day and worn out the next. I feel in some ways stronger, but also more distant. Is the distance part of the strength? Am I simply letting go of some of pain to make room for more pleasant memories? Or is all this just a fluke and tomorrow a memory, a scrap of paper, or another child will take me down? I'm not sure. I'm hoping for b) the less pain, more pleasant memories option. Though that thought makes me sigh again—I wish there were more than memories.

A Walk to Remember

Today was the Empty Arms walk. Kathleen and I were there at Look Park, with a balloon with Henry's name written on it tied to her stroller.

In addressing the group, Carol said that when Charlotte died, she was afraid that nobody would remember her daughter, yet so many people now know her as Charlotte's mama. I know the desire to have your baby remembered. I am "lucky" in that Henry lived for six and half months. Many people got to meet him, perhaps briefly, perhaps while he was on the paralytic, but they met him. I remember saying over and over at the funeral as people came in, "I'm so glad you got to meet him." Each person who met him, even those who only read his story, keep a tiny piece of him alive.

So I carry pieces of the babies I've "met" in person or online through their mamas: Charlotte, Magie, Birdie, Emma, Hope, Tikva, Callum, Liam, Oliver, Eliana, Jordan, Sean, Isabella, Teddy, Caitlin, Keely, Ezra, Sage, Grace, Theo, Christian, Justin, George, Sam, Thomas, Nicholas, Andrew, Gwen, Gabriel . . . so many and yet I know there are more, not just more babies, but babies I know.

I'm so sorry they aren't here.