Music, Memories, and Meetings

Music and memories
Saturday I took Kathleen to see Elizabeth Mitchell (our morning music in the afternoon!). I enjoyed it (Kathleen slept through it in her sling), though some moments made me sad. Two songs almost brought me to tears.

When they played "Three Little Birds," a montage of Henry images played through my head: sitting on the end of our couch feeding him a bottle with his surgery approaching, me singing along almost desperate to believe that "every little thing's gonna be alright"; smiling at him in the bright morning light of his room in the CICU, scared, but hopeful; standing with Brian's brother and sister next to Henry's bed, the night he almost died in October, when we still weren't quite sure he was going to make it . . .

They ended with "Peace Like a River." This is one of the songs I sang to Henry all the time. It was the only song I picked for his funeral. I felt like I should choose music and readings that were meaningful, but I couldn't think. I think Brian suggested something from the CD, and that was the first thing that came to mind. Henry did bring me peace and love and joy, though so often during his life I felt fear and anger and frustration.
***

Vanishing act
At the show, another mama came over, noticing I had a very little one. Both our babies were two months old. We chatted about front carriers and neck strength and when they could face forward. Before I could ask her name or where she was from, she posed "the question." Is she your first?

I don't have trouble with this one. No, our second. It's the follow up that gets me every time. Oh, how old is your first? I took a deep breath. He passed away just over a year ago. He was 6 1/2 months old. I had a chance to say that he spent half his life in the hospital, but not that I played Elizabeth Mitchell for him every morning. She murmured an I'm sorry. And then she was gone. No nice to meet you, no enjoy the show. Just gone.
***

Finally we meet
When the show ended, I went over to talk to Birdie's Mama. We have been emailing and talking and not quite managing to get together, so it was good to finally see her and especially to meet her sweet Holdyn. We stood there after the show, both teary, recognizing each other's happy and sad, meeting each other's second baby for the first time and honoring the ones we were missing.

Back into the Closet

Last February, my mom came out to visit and we tried to organize Henry's room. After he died, I didn't want to see baby stuff everywhere I looked, so we had piled everything into his room. She agreed to help me get it organized and get stuff put away.

Day 1, we sorted clothes by size and put them in drawers or plastic bins. I pulled an outfit here or there that particularly reminded me of Henry. It wasn't so bad, not as hard as I thought it would be.

Day 2, we pulled everything else out of the closet—toys, Bumbo seat, baby rocker, mobile, play mat, exersaucer, stuffed animals, more clothes, diaper bags . . . I left the room to get something and coming back in it hit me. I looked at the room full of stuff, all of those things we got for Henry, all of those things he had not had a chance to use, and I broke. I sobbed and sobbed on my bed clutching his yellow blanket.

Eventually, we managed to get everything back in the closet or the dresser or bins under the crib. And in the months that followed, I found I could go in and out of that room and it usually didn't bother me.

Shortly before Kathleen was born, I went into the nursery to get some fabric out of the closet. I bent down to get it and looked up at the row of blue clothes hanging above me. The clothes Henry never wore. Would it be better to have a boy and finally be able to use those things or a girl and not have to? Would it matter? I didn't cry that day, but I looked at that row of clothes for a long, long time and left the room quietly weary.

So I should have been prepared today when my mom and sister came to visit and we tackled the room again. Kathleen hasn't been sleeping in there, but I want to be able to change her and rock her in there at night. I wanted to put away the clothes she has outgrown and know where the clothes she will be growing into soon are.

We sorted and piled and piled and piled. A mountain of blue clothes, most still with tags. All these things Henry never wore. I remember people giving us things for 3-6 months, 6-9 months, 9-12 months, or bigger. "It will be too big for him now," they'd say. "Oh, we expect him to keep growing," I'd reply. Of course we did. I never imagined that 3-6 months would be spent in the hospital, that he'd never get to 6-9, 9-12, or bigger.

We organized the clothes by size, pulling out the ones I thought I might use for Kathleen. We pulled out toys and books, bigger diapers and a changing pad. Then we packed all the blue away for now. Such a big box of it.

The last thing I looked through was a small bin. It contained two blankets from the NICU; 5 outfits that make me think of Henry; a couple of toys that I pulled back out for Kathleen; his caterpillar toy that I couldn't bring myself to use again yet and a caterpillar blanket he had in the hospital; a bear, a onesie, and two burp clothes with his name on them; the hats that fit him for the first few months; stuffed animals he had in the hospital; and the teddy bear wearing a Children's Hospital t-shirt that I bought him as a going home gift, a reminder of where he lived for three months.

Too much. I folded over the bin, tiny knit hat in hand.

I remember his tiny head in those hats, the smile on his face as he looked at the caterpillar, how happy I was shopping for that bear knowing we were finally going home, how he looked like a little old man in my favorite of the outfits. And he's gone. Gone.

And I miss him so much.

February Thaw

Spring is coming, but first snow.

I know that I keep talking about spring and I know it is far away, but this time of year hints of spring buoy me up. Today was in the 40s and sunny. The sky was blue and clear, the air had a softness to it. There is still plenty of snow, but our dirt driveway was muddy.

Coming in from a walk, I remembered a February day last year, a day that was warm and bright like today, a day that smelled of wet dirt. I felt the hope then too.

Henry had been gone for about two months. The numbness was wearing off. Waves of understanding that this was forever threatened to drown me. Everything was so bleak. And then, came that February day that screamed spring and hope bubbled up in me, just a bit. I remembered spring. It would be warm again and bright. Things would grow; green would enter the world's palette again.

It would not always be so cold and stark, dark and bleak. I knew my darkness wouldn't end with winter's short days, but I knew that someday I would stand in the light again.

So here I am a year later, my grief still very much a part of me and my life. It touches everything, but does not overshadow it. There are still hard days, but things are brighter; my capacity to hope deeper.

Today was warm; tomorrow it may snow. But I know spring is coming.

Heart Holiday

Brian and I had a quiet Valentine's Day at home. We grilled scallops, tuna steaks crusted in black pepper, sirloin steak in a soy-ginger marinade, and skewers of vegetables. I made a pecan pie for dessert, because Brian is a pie guy. I prepped, he cooked, and we ate together in front of the fire place. Kathleen cooperated by eating and falling asleep. It is one of the first meals I haven't had to wolf down in two months—and it was good!

The room was dim, lit only by the fire in front of us and Henry's memory lamp behind us, and I found myself crying, thinking of Henry.

In many ways, Valentine's Day is Henry's holiday, although we never celebrated one with him. Red hearts are every where. Red is his color; a heart, his symbol. And of course, there is the love. I don't need a special day to miss Henry, any more than I need a special day to say I love. Still this Valentine's Day I did both.

2 Months

Kathleen is two months old today!
Time flies. They grow up so fast.
Clichés but true.

Kathleen was born in an ice storm, though it all started after we had arrived at the hospital. But the day we brought her home from the hospital was freakishly warm for December. I had her bundled up in a long-sleeve t-shirt and fleece sleeper and a hat and the Bundle Me over the car seat. It was overkill, but it was December. I bought the fleece sleeper specifically to have something warm for her to wear because all the newborn clothes I had were for a spring baby.

Like that day we brought her home, today was unseasonably warm. It was sweater weather, near 60. We got out for a wonderfully warm but sloppy, slushy walk today.
I know this weather is a tease, but it makes me so hopeful.

And the sleeping baby in my lap makes me feel so peaceful.

Brighter

We went for a walk this afternoon.
At 5 o'clock.
It was still light out.

Spring is coming . . . far still perhaps, but coming.

Turning a Corner

One thing I know about grief is that it is not linear, not a straight progression from bad to better. You may wake up okay and fall apart in the afternoon. Two bad days can be followed by a good one. And sometimes you turn a corner.

Carol noted recently that I had turned the corner into joy again. And I have. I love being here. Kathleen certainly propelled me into this place faster than I might otherwise have arrived.

This time last year I couldn’t have imagined being here in a place where there is light and joy along with the shadow and sorrow. I was deep in the darkness, the heaviness. I knew it would get lighter but I couldn’t see how or when. I couldn’t envision the me of today; I could only look back at pictures of the me who had been and wonder at her smile, her sparkle, her joy. I still wonder at her, that she who was me. I may not sparkle, but I smile again. The joy is tempered by loss, but it is still deep. The missing and the delight are wrapped closely together.

I have turned a corner, started a new part of my journey. This road of grieving, of missing, of Henry being gone still stretches out before me. But I have turned a corner.

I look back at this time last year, not to dwell in the sadness or because I cannot move forward. I look back sometimes to see how very far I’ve come.

Double Whammy

As I entered the hospital to go to the baby group today, I saw a woman I know at the information desk. We used to be in a book group together, but we both stopped going a few years ago. I had been surprised to see her there when I brought Henry to the group the year before last. I hadn't seen her since.

I introduced her to Kathleen. She said how cute she is, commented on her hair. “And how’s your son.”

Deep breath. “He passed away. Just over a year ago.”
She expressed her sympathy. I nodded, said thank you, and continued on, deflated.

***

We were introducing ourselves and our babies. It was second baby to my left. “And this is Henry.” Henry. I kept staring at this other mama’s Henry, this Henry who was not my Henry, and tried not to cry. Later as we were all getting ready to leave. I told her I loved the name, that I had a son Henry. Kathleen started screaming mid-sentence, so she had to ask if she heard me right. “Did you say you have an older son Henry?” Have, had. I do have a son, but I don’t have him here, so can I say I have him or should it be had? “Yes. he died just over a year ago.” It was awkward, but I had to say something. That name. My Henry. I miss him.

***
And now? I’m just tired. I always start at hearing his name. I probably would have handled it better if I hadn’t been blindsided on the way in. Maybe I should be glad that somebody remembered Henry and asked about him. I recognize that as a good thing, but every time I have to say my son died, I feel like I die a little too. And it’s been over a year. I’m prepared for “how many kids do you have” to be a hard question. I know that as I talk about mothering Kathleen, I inevitably refer to Henry and end up talking about him. I know I will meet many people who have no idea that I have a son, that Kathleen is my second child, unless I tell them. But it’s been over a year. How many more people are there who know I had a baby boy named Henry, but don’t know that he died?

These encounters make me weary.

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.

6 Ss

Scattered—That's me lately. I keep a notepad by my chair to write down things I need to do, because I think of them when I'm nursing and promptly forget. I have posts half written in my head never to be finished. When Kathleen takes a nap, I am almost paralyzed by what I could/should/want to do and start half a dozen things without finishing them.

Snuffly—Kathleen seems to have her first cold. She's been stuffed up for a few days now. It's made sleeping flat hard for her, so we've put getting used to the bassinet on hold for a little while. I hope she shakes it soon, but I'm not freaking out as much as I thought I would.

Spit up—Kathleen's been doing a lot more of it, so I've been doing a lot more laundry.

Screaming—Lots of this too. From about 4:30 PM onward seems to be fussy time when she is just inconsolable. Clean diaper, full belly, nursing, shushing, walking, singing, pacifier, swaddling, boucing, back patting . . . none of it seems to help.

Smiles—To counter balance the shrieking, we have been treated to more smiles over the past few days. Yes, sometimes she'll go from smiling to shrieking in seconds, but, oh, the smiles. Such a treat to see. Makes me smile just thinking about them.

Satisfied—Sleeping baby snuggling in my lap.

Morning Music

At one of my showers before Henry was born, a friend gave me a CD called You Are My Little Bird. I had never heard of the CD or the artist or most of the songs on the CD. It got stacked with a bunch of other baby CDs and forgotten until the friend who gave it to me asked if I liked it. So I pulled it out and played it. And I did like it. Very much.

I started playing it for Henry in the mornings as I fed him. I especially liked tracks 5 and 6 with their messages that everything would be OK, for I was scared and worried about Henry's health and his upcoming surgery. Later, when we were in the hospital for so long, I began to play that CD for him again each morning. (His evening music was a Louis Armstrong/Duke Ellington CD that was very popular with the night shift in the CICU.)

After Henry died, I kept listening. We played it as background music at his wake. I kept it in the car to listen to after yoga or to play when I stopped at the cemetery. Different songs jumped out at me, the lines "Angels in heaven know I love you" and "In the silence that surrounds, deep peace and love are found" spoke to me. I often cried as I listened, but I loved it for what it was and for what it reminded me of.

I hadn't played the CD for Kathleen. She has perhaps heard it in the car, but then I played it for me. The other day, I played it for the first time for her. And I played it again the next day and the next day. I wasn't sure how it would feel to play "Henry's CD" for her, but it was good. Instead of being "Henry's," it felt like a tradition revived, something shared by him and her.

Kathleen is starting to wake up, getting ready to eat again. I need to go change her, warm up her bottle, and put on our morning music.