Who we were

Saturday night we danced, Brian and I, at my cousins wedding. We smiled and laughed and kissed and danced. It's been a long time since we danced.

We dance every night with the girls, but that is all about getting out extra energy and swinging Kathleen around and spinning her. We have danced a few lines of a song in the kitchen while cleaning up after dinner. But it has been years since we really danced.

We are not particularly graceful or skilled dancers, but we dance together with the abandon of people who don't really care. We sometimes look better than we should because we don't worry what we look like. I suppose sometimes we look like asses out there, but asses having a good time.

We both noticed, how light it felt and easy and . . . like us.

I'm not quite sure what to do with that now, because it was a good reminder of who we were, who we could still be.

Over the summer, I took my niece camping at a local state park. It poured the one night we were there, and as I was standing in the rain heating water for our dinner, the smell of the gas and powdered cocoa and the hiss of the stove made me suddenly miss backpacking with Brian.

I was perhaps nostalgic, forgetting how tired my legs would be, how achy my back, how heavy the pack. I forget about my tent anxiety (perhaps a mild case of claustrophobia that I had to overcome each time we went).

I remembered how good the food tasted when you've worked for it, how cool the breeze feels on your sweaty back when you take your pack off. I remember taste of boiled water and the watery dregs of hot cocoa as I drank the water that cleaned my mug and the taste of oatmeal mixed with a leftover tang of chili in the morning. I remember the smell of the open outdoors and the musty tent, despite good airing and drying practices. I remember the snug feeling of slipping into my sleeping bag, my sleeping pad shifting under me as I rolled trying to get comfy. (Comfy is a relative term in the woods.)

Standing there in the pouring rain, in my Gore-Tex coat (it's more than a coat, it could save your life, Brian says) with the well appointed hood, tending the stove that I lit for the first time ever, I got nostalgic. I missed the damp, dewy mornings, the hustle of setting up and settling in in the evenings, the hard climbs, the good views and pack off breaks, dreaming about what we would eat when we finished.

Did I really miss all this? Or did I miss that time with Brian, the sense of adventure? Do I miss who we were then? Do I miss the time we had? our innocent, unscarred selves? Do I miss my body that seemed more invincible? It seems somedays we are both falling apart.

If we had a chance to go away, I would be inclined to go someplace with a cushy bed, perhaps a fireplace, good food, wine. But part of me would collect all the gear, tent and sleeping pad, sleeping bag and stove, cook pot, plastic mug, sturdy spoon, stuff sacks and synthetic clothes. We'd get it all in our packs, purple next to black, and go. Tie on our boots, hoist the heavy packs, tighten straps, grab our poles and go. Left, right, left, right. Go.

Brian would lose me on the uphills, and coming back down too. Much of our day would be spent in solitude with breaks to chat and the longish night together. I would not come home well rested (oh, like that wedding on Saturday), but I like to think I would come home restored.

Brian has always lamented that I don't do winter backpacking, so we have a long winter and mud season to get through before we might even venture out. I think we need some time though and that reminder of who we were, who we still are underneath the tired grief and lack of sleep and daily grind of diapers and laundry and groceries and bills and dishes and bedtime. Maybe a day hike soon (like we did on our first date) would do the trick.

Or maybe we should just crash a wedding and dance.

Vestiges

The CD player in Kathleen's room wasn't working right. While I was fiddling with it, I noticed the tape across the top, white tape borrowed from the nurse's supplies, name scrawled in blue magic marker: Henry Barry. The tape has been there since part way through Henry's hospital stay when I had the CD player that I got as a shower gift brought to me there. Mostly I don't notice the tape anymore, but when I do, I can't seem to peel it off.

After I saw it, I started seeing the other vestiges of Henry in our house, not the photos and mementos I've purposefully placed, but the things that are just there, a reminder that he was once here.

There's the file on the desktop of my computer: heartquotes. I never sent a birth announcement for Henry. Things were so crazy after he was born I couldn't pull one together. Then, when I felt like I could do it, we were so close to his surgery, I thought I'd send a post-surgery update (and have a no-oxygen picture!). Because Henry was my heart boy, I wanted a heart quote for the card. I started collecting them in this file. None of them were ever right, yet I have trouble trashing the file.

A "Congratulations" sign a neighbor stuck in a pie is now stuck in a plant. A bow with a ribbon printed with blue teddies found a home in another plant.

A tube of ointment for an eye infection still sits in the bathroom drawer.

These things will probably continue to sit where they are, until somebody else throws them away, because even though they aren't the things I choose to keep of Henry, they still are off him, of his time with us, little traces showing he was here, and I can't seem to get rid of them.

Looking back on the day

Last year, walking through the soft, big flakes would have triggered a memory. I would have found myself back on Longwood Ave., stumbling along the slippery sidewalk, Henry heavy in his car seat, the oxygen tank slipping off my shoulder. Yes, a bit of weather could have thrown me back into the full-blown panic of trying to get my baby back to the hospital after being discharged into a massive traffic jam caused by a not so massive snow storm. But yesterday, I just noticed the beauty and sighed at the sight of more fallen lilac bush limbs. Then later in the day, my brain made the connection but I didn't get the emotional punch.
***
Today we went to our favorite sugar shack. We took Kathleen for the first time last year, and it triggered a flood of memories and missing. This year was different. We ran into friends who have a little boy who was born three days before Henry. We sat together and talked about a mutual friend who is pregnant again. We laughed at their son bestowing kisses on Kathleen. I fed Kathleen; they admonished their son to sit down and eat. It was fun to have breakfast with somebody we know.

Not once did I look at their son and think that Henry should be sitting across from him at the little kids' picnic table. Not once did I have a stab of what should be but isn't.

Later in the day I thought about the fact that their son is Henry's age, a simple fact once would have paralyzed me. I might have cried all the way home or curled into bed with Henry's blanket once we got here. But lately, things haven't been triggers tripping off emotional explosions. Lately, they just make me connect memories, that may be sad but are not as loaded as they used to be. It's a curious thing.
***
Tomorrow, perhaps, or the next day, the slant of sunlight coming in the window or the scent of moist soil or a paper that got tucked into the wrong box may set me off, leave me clutching the counter top to stand and wipe me out for days. I know I have no power over these triggers. They come unbidden and unsuspected. Right now, the likely candidates aren't hitting me that way.

So for now, for as long as I can, I'll enjoy the fluffy snow and the conversations with the woman who I shared my first big belly days with. I'll watch with a smile as her son plays with my daughter and not bemoan that he doesn't play with my son. I'll enjoy these things as they are today, unmarred by scary memories, unshadowed by what what should have been.

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.

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.

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.

Where He Died

"How did it go?" I called from the living room where I was nursing Kathleen.
"Okay."
He was standing at the counter, still in his coat with an open beer.
"Are you okay?" I ask, surprised.
"It was hard."

He turned and I could see his eyes. Oh, yes, it must have been awful. Brian had his first day of clinical for the semester yesterday (he's in nursing school). He's doing a pediatric rotation at the hospital where Henry died. I knew that working in pediatrics would be tough for him. I knew it was a long day and he wasn't feeling well. I also knew he wouldn't—not the first day anyway—be in the PICU where Henry actually died. But I underestimated how hard it would be for him to be back there in that space, to have to walk down the same hallway that leads to the PICU.

He asked if I remembered the tiles and I nodded. "That's where I had to wait for my clinical instructor." The tiles for children who have been there are near a playroom that leads out to a patio. I sighed and hugged him. And was back there, unwillingly wandering those hallways in my mind.

***
I was out on that patio on warm September sun, crying and shouting about the injustice of it. I had put up with three months of oxygen at home. I had spent an anxious day waiting to hear that my baby had come through surgery. I had gone in to see him only to find him buried under so many tubes and wires I could hardly find him. I had literally danced around the room with him when all of those tubes and wires were removed, when he was off oxygen for the first time in his life. He had been home two weeks. He was supposed to be better. Our life was supposed to be normal. So in September I suppose I was scared, but more than that I was angry.
***
I walked by those tiles a million times. I was afraid to look to close. I didn't want to think about children, babies, who didn't make it. I remembered the plaque on the bench outside the NICU, the birth and death dates in the same year. I couldn't think of these things. Not with my baby a few doors away struggling for his life.
***
In December, the bearded doctor whose name I don't remember came out to tell me that they had Henry on a ventilator, and I started crying. He tried to reassure me that it was temporary, that it was what Henry needed right now, but all I could think was "That's at least two weeks to get him off it." I couldn't think further than that.
***
Walking out at one point I misread a sign. I don't remember what it really said, but I read it as Tired of making miracles. It wasn't long before Henry died, tired of making miracles indeed.
***

I struggled each time I went to the hospital for my prenatal care when I was pregnant with Kathleen, and I didn't have to go into the children's hospital area. I only had to drive by the various entrances that marked Henry's life: the door I went in and out of daily for nine days while he was in the NICU, feeling mocked by the cheerful gift shop right by the door; by the entrance where I stood numb and in shock while my baby's body—not my baby—lay upstairs; the ambulances outside the ER, where Henry arrived twice—once with me, once alone; the door to the ER where I rushed in with Henry as Brian tried to park in the middle of a snowstorm.

The simple perimeter of the building could reduce me to tears. How did I not really imagine how hard it would be for Brian to walk onto that floor, down that hallway again? He will be there every Wednesday for the next couple of months. I hope each week is not this hard. I pray for strength for him for the day he is assigned to the PICU as they have told him he will be.

Not the same room . . . or a six month old . . . or a baby with Down's . . . or a cardiac patient . . . though probably none of that matters. Just going back is enough to trigger the even now impossible memories. I can't imagine going back, never mind going back and having to maintain professional decorum.
***

"Was it that bad?" I asked.
"It was hard."
Oh, of course it was. I should have known. I'm left with a dullness within today just thinking about it.

Addition and Subtraction

We just got our annual street listing form in the mail from the town clerk. It lists me and my husband, noting our names, sex, date of birth, occupation, political party. It says that we have no dogs or cats, though we'd like to have a dog again someday.

It is a fairly innocuous form. Even column 9 seems harmless, narrow as it is, the words Moved/Deceased, cramped and vertical to fit. And it was that column that killed me this time last year.

Deceased.

I drew a line through Henry's name. I could not have had the chance to write his name in, for he was born after the form came in 2007. He must have been added once his birth certificate was registered at the town hall for there he was: Brian, Sara, Henry. I drew a line through his name and wrote a D in that column.

Deceased.

He was only 6 months old. He had been "deceased" for less than a month. I could barely breathe as I corrected the form.

So the form came today. This time it says only Brian and Sara. I need to add our daughter, born last month. Adding her name is a joyful act, a natural one, completely different from the elimination of life I had to mark last year. The form will go from showing two people to showing three. It is much better than moving from three people to two. Still it doesn't add up right.

There are three people living in our house, but we are a family of four.