Right Where I Am 2013: Five years, five months, fifteen days

Past years in this project, I was on the verge of Henry's birthday, which meant that no matter how good I had been doing, I was wound tight, waiting. This year, though, his birthday is just behind us. He would have been six. I'm almost five and a half months away from last holding him.

Like last year, he feels far away. Even when my girls talk about him, about how we love him, how they wish he could be here, and they do talk about him often, he feels far away. That he was here, sometimes feels like a dream. Immediately after he died, it all felt unreal, that he had died, but also that he had lived, and the latter part of that bothered me to no end. If he was not real to me, what about the rest of the world who had not felt him kicking inside, had not rested feeling their body calming with his as he slept on their chest, had not felt the flash of his smile. Now, it is a gentler distance mostly.

It is still surreal to me if I let myself think about it. I had a baby boy and he is not here.

But day by day, I get my big girl off to school and hug her when we both get home for lunch. I snuggle in the morning with my little girl until I can convince her to come make coffee with me. I tell stories and sing songs at bedtime. I notice how big they are getting, and only rarely do I compare to where Henry might be.

Right now, I notice the tree we bought as a gift for his first birthday is heavily laden with peaches. Right now, the red-flowered hawthorne we planted on his first birthday, a gift from my husband's cousins, is starting to fade, but was absolutely brilliant this year. Right now the garden that I tend for him is full of color, early, purple phlox that is almost luminescent at dusk, tiny blue starry flowers that I can't name, brilliant red verbena and the red gerbera daisy I planted this year on his birthday, a hint of pink covered in ants that makes me think of Mary Oliver where my peonies are about to bloom for the first time.

Right now, I'm exhausted but feeling strong. Finally. I am tired, but not worn out. There is something left in me to give. I think in possibility again. I start projects like overhauling parts of my garden that haven't been touched in years, like writing something more than blog posts, and in that writing starting to delve back into memories and sometimes finding that things are closer to the surface than I realized, and sometimes realizing there are still little pockets I have not really explored since he died (though sometimes it seems I have explored every inch from every angle).

Right now I am grateful for the neighbor who knew me when Henry was born and knew Henry for sitting with me on Henry's birthday with a bottle of wine and the dinner I threw together. Right now I'm grateful for the neighbor who didn't know me when Henry was born and never knew him for asking how I was doing in the days before his birthday (not the first time she has given me that space to talk about him).

Right now I'm listening to the summer night sounds coming through the window and the silence from upstairs where my girls finally fell asleep. Right now I'm relieved that I can once again enjoy the quiet.

Right now, I'm grateful to Angie for hosting Right Where I Am again. Because five years and some plus, I still need to pause and reflect.

Right where I was 2012
Right where I was 2011

A few days late

I'm grateful for family
and traditions
and the laughter of Thanksgiving night, after the crowd has thinned and the turkey has been put away.

I'm thankful for my neighborhood, where people share and help and look out for each other

and for the beauty of this area and bounty of my garden. 

I'm so very grateful for this community and this space, 

for people who listen and read and nod and say "me too" and send big hugs when I need them most, 

for the amazing people I've met because of Henry

for the wonderful people I knew who I got to know in a different way because of him. 

Glad

Lately I've been listening to "So Glad I'm Here" from Elizabeth Mitchell's You Are My Sunshine every morning. It's been going through my head for over a month now, and it feels like a really positive way to start the day. Because I am. Glad I'm here, that is, and I'm trying to let go of the need to hold onto the hurt.

I have been, holding onto the sadness, without even realizing I was doing it. It's like when I would swim at the pool wearing my rings. I'd come out with a hand cramp from inadvertantly clamping my fingers together for fear one would slide off and be lost. For a long, long I didn't have to hold on. The sadness was just so big and heavy it wasn't going anywhere, but now, almost four years down the road, when I stand in the light again and smile and laugh and feel as well as see the beauty around me, I find I still cling to it sometimes, holding it out to anyone, who might think it is gone. It's what prompted my bitter grumblings. It's what makes my smile dim just briefly when somebody tells me I have a beautiful family. It's what makes me prod around inside sometimes to see if something is going to bother me.

It isn't gone. It isn't going away, but I don't need to call it up. It will visit me on it's own. So right now, I'm facing the sun, seeing the light, feeling the warmth, enjoying the brightness of the world, knowing that my shadow is behind me whether I look at it or not.

I still face December with trepidation, not sure how it will hit this year, but for now I'm not revisiting four years ago. I didn't race down the road in the back of ambulance on September 11, didn't rewalk in my mind the labyrinth of halls from the ambulance entrance at Children's to a too bright room on the eighth floor on September 13. I went for a run on a cool, dry, clear day and thought perhaps I could run forever. I shopped for groceries and sorted clothes and gave Kathleen high fives for using the potty. I lived, I didn't relive.

My zinnias are still blooming, three shades of pink and a little orange. The leaves are starting to pile up. Tomatoes fill my counter waiting to be cooked down, and in a minute I will brave that late batch of mosquitos to pick green beans and see what else is ready in the garden. This is the September I love.

I am opening to the golden days and the gladness. I wish he were here, but I don't have to tell you that. I'll always wish he were here, but it doesn't stop me from being glad that I'm here, so glad I'm here enjoy these golden summer-fall days, so glad I'm here with Kathleen making up songs and Elizabeth chewing everything she can find.

***
Thanks to Kathleen and Elizabeth for bringing joy to my days and to Mandy for giving me the song and to Angie for Right Where I Am, which I keep circling back to, and for asking for questions, which prompted me to start answering my own, and to Barbara for helping me remember to notice good things and to open this space up to them, and to Liz for making me think about being open to and seeking joy, even if it made (and may make me still) grumbly. Thanks to you who come here and listen to me grumble and glow. 

Gratitude and Good Things

Years ago, a friend gave me a blank book to use as a gratitude book, an idea she got from Oprah. I tried it for a while, sitting down each night and listing three things I was grateful for. Some days it felt quite forced. Maybe it was that word grateful. It feels so big.

When Henry was in the hospital, I'm sure I prayed more than I ever have before. Throughout the day, I'd send out hope as a prayer. At night, as I lay on the narrow, plastic coated bed that crinkled and made me sweat, I'd prayer. And each night, I began not with please, but with thank you. I don't know why or how I started doing so. Maybe it was a really good day—or a really bad one. In any case, that was how I started each night with gratitude for at least one good thing. There were days it was easy to find one thing—or more. Other days I had to struggle. Some days it was simply that he was still with us or that we hadn't had setbacks. Open eyes. A breath on his own. A smile. Getting to hold him. Climbing into bed with him. A visit. A note from somebody unexpected. Having our favorite nurse. Coffee and cookie hour. Little things.

I'm aware of the big stuff. I'm grateful for a family that I both love and like. I'm grateful for my children and my health. I'm grateful for a comfortable home in a safe place with wonderful neighbors. The little stuff, the day-to-day stuff, is the stuff it's easy to overlook, and I try not to. Sometimes the gratitude for the little or the mundane has simply been hanging on to a splinter of hope; other times it is a deep, deep awareness of the world around me. And sometimes it's just acknowledging simple pleasures.

Last Monday, Barbara inspired me to list 5 good things. She's back at it this week, and I loved seeing her list again. It feels like such a positive way to start the week.

Here's my list this week (if you read the comments on her post, you'll see my five things have changed already, not because those five weren't good, but because I've had more.

1. Homemade pizza for dinner
2. Working in the garden with Kathleen: getting potatoes planted—one step closer to the garden being done; watching her sturdy little legs going as she went back and forth back and forth the the compost pile with my weeds in her wheelbarrow
3. Anticipating chocolate cake at least once (maybe two, maybe three times) this week for my birthday
4. Birthday greetings beginning to roll in
5. The quiet when everyone else is asleep (although sometimes it keeps me up when I should be asleep too)

Letters unsent

I read Tash's post on Glow. The letters I've been thinking about but not sending are a little different:

Dear R, 

We got your Christmas card—L. looks great! We hope you've enjoyed a lot of time away from the hospital. I will never forget how you tried to help us the night we were afraid Henry would die. You stayed with our family for over an hour, trying to buck us up, to give us hope, to calm our fears. I really appreciated it. Later I learned that L. was on ECMO at the time and I appreciated it even more. 

Dear A, 

I don't think I ever thanked you for giving me back my baby. Dressing him, putting the quilt and stuffed animals on his bed, and setting up our cards and books made such a difference. Even now, more than three years later, that kindness stays with me. 

Dear R, 

I do remember you giving me a white rose at Henry's funeral and another at the mass for his first anniversary. They are dried in a vase in my office. Thank you, especially for remembering us on his first anniversary. I walked into the church heavy with grief and knowing we would see people who would see the new baby, not the sadness hanging off me. Thank you for recognizing that sorrow and for remembering. 

Dear M, 

Thank you for never shying away from talking about Henry. It means so much to me that you ask questions about him and refer to him as if he were any other member of our family, even though you met us after he died. 

Lately, these are the letters that have been running through my head. 

Red birds and stars

There is so much to tell, but somebody is beginning to stir and will need to eat soon and then I will gladly go to bed until she begins to stir again.

I'm so glad to be home and settling in. A week of doctor's visits and heel sticks is over, the phototherapy equipment just needs to be picked up, and her jaundice is a thing of the past. Today her weight is back up again and we are in the clear until her one-month appointment. I am thankful for this.

I'm thankful too for these red birds and stars that made their way to me over the past month.

Sierra's mom, Erika, saw this cardinal and thought of me and Henry. I love the smoothness of it, the heft of it in my hand and the way the stone takes on warmth. It came with me to the hospital, a talisman to get me through the 17th.

I participated in Jenni's ornament swap. This arrived in the mail while I was in the hospital. My parents were intrigued by my package from another country and brought it to me. This heart-centered star is my ornament from Marie-Josée with wishes for comfort, peace, and joy. 

This lovely red bird ornament came from Liam's mom Amy. It was a surprise on a day I needed a lift. We didn't do a tree this year, but this little red bird has greeted me each morning when I turn off Henry's memory lamp and again in the evening when I turn on the light. 

Thanks to every one who has made my dark season a little brighter.  

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.

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.

Gratitude

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.

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.

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.

While You Were(n't) Sleeping

For a couple of weeks, Kathleen has not been sleeping well. I was averaging about 3 hours of sleep a night and just barely getting through the day. One day, I thought, "This is hell," but I quickly corrected myself, because it wasn't at all. I've been to hell. This was just hard and exhausting, but I knew it would end and I would sometime get more sleep and in the mean time I had a warm little body on my lap or next to me in bed. A couple of nights of five hours of sleep has made all the difference.

So while we weren't sleeping, I was getting behind in laundry and dishes and work and reading, so I just realized that Amy at Surviving the Day nominated me for the Sisterhood Award. I started reading Amy's blog because her blog name caught my eye . . . some days that's what it is, survival.

The rules* are to pick to blogs with great attitude and/or gratitude. Here are my 10 (and I know some have been nominated before:

• The Happy Sad Mama
  
• Growing Inside
  
• Little Birdie Little Bunny
  
• Tuesday's Hope
  
• Ezra's Space
  
• Building Heavenly Bridges
  
• A Fifth Season
  
• I Lost a World
  
• Flotsam
  
• Missing Eliana

I started to explain why I picked each one, but sleep is still a limited commodity around here, and it's taken me two days to get this far. Suffice it to say I'm grateful to have a window into the world of these other loss mamas and their sweet babies. They've given me things to think about and made this journey less lonely.


* The rules:

• Put the logo on your blog or post.
• Nominate 10 blogs with great attitude and/or gratitude.
• Be sure to link to your nominees in your post.
• Let your nominees know they have received the award by leaving them a comment on their blog.
• Be sure to link this post to the person who nominated you for the award.