Clear and bright

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The sky was bright and clear, baby blue. Outside felt still, but you could see the clouds move. Dusky gray and white wisps and mounds moved quickly across the sky. And even though I saw the sun sunk low behind the skeletons of trees and the house across the way, it was lighting up the tops of the clouds as if the sun sat within each one. 

I felt lighter today, as if the storm clouds that hovered low overnight Saturday into Sunday held the darkness close to me. It’s clear now, more open—and cold. The stars will be crystalline tonight over the glittering snow. The moon will encourage me to take a late snowshoe or ski, when I bring the dog out to pee, but I’ll go back in by the fire to keep watch over the girls who sleep above. (Or so I hope.)

An hour later, at five, I roused the dog from the couch where he’s slept all afternoon after a long morning romp through the snow. While I waited for him to do his business, I could see that the sun I had glimpsed at four had sunk away completely, but still there was the tiniest glow in to the west. We turned the corner and I could see the hint of a ghost of the full moon behind the tall pines across the street. As I waited, more clouds hurried across the sky, these glowing too, lit from below by the yellow moon. Even in the dusky purple gathering darkness, there was light all round me.

I’m tired, worn out from the tension of joy and sorrow of this month, worn out from the anxiety and relief about my dad, worn out from the bustle of getting ready for Christmas and birthdays even though I tried to let what I did be enough, worn out from this cold that has kept me up too many nights reading and sipping hot tea. I’m tired, but this open sky, this glow within the clouds, this cold, is stirring something in me, some energy I didn’t know was there, some energy that feels something like hope.

Green magic

 A cold front blew in today and the blue skies belied the blustery wind. I pushed aside the winter boots and snowpants along with any notion of packing them away. But, there was this:

and this:



This time of year is such a time of hope and promise and waiting. I remember knowing that even in the spring of 2008 when somehow knowing there was hope even if I didn't quite have it was enough.

Today, I have the hope, and I nearly squealed to see those seeds Kathleen and I planted in the old milk jugs starting to turn into broccoli and bok choi and lettuce and marigolds.

Spring hopes eternal

Two days ago, the snowdrops were blooming. My garden was mostly bare, muddy, half-frozen ground.

Today, my gardens looked like this:

Happy spring. (Grumble)

This time of year, I need something to look forward to so  I go out for pancakes and syrup, because sap boiling is a sign that spring isn't here yet, but it's getting close, and sugar shacks give me something to look forward to in what would be a month of mud and slush and fresh snow that nobody but skiers wants.
I need some brightness, so I buy bunches of daffodils every time I go to the store and cut branches of forsythia to force for our Easter tree.

I need to act like spring is coming, so I buy seeds anywhere I see them (and I never remember what I've bought so I always have way too much lettuce and peas and none of something else.) I never start seeds because I don't have a good place to do it, but last year I read about winter sowing in milk jugs. Today, in honor of spring, I started my garden.
 

 I gathered the seed starter and the seeds and the saved milk jugs from the barn. Then I schlepped through the snow to the compost pile out back. Even as I grumbled about the snow, I noticed that the sun had come out and the air had a hint of softness to it. The snow was still a solid covering, but underfoot it was yielding. You slid ever so slightly in it instead of crunching. And, I had to admit, it was pretty, clean and sparkly instead of dingy and dull.

I dug into the compost pile, clearing away a layer of snow and a layer of leaves. Underneath, instead of frozen ground, the new soil was warm and rich and fragrant. I scooped two small buckets full and added them to my pile of supplies in the kitchen. 

I prepped the milk jugs by cutting them most of the way around and stabbing drain holes in the bottom. Kathleen helped me fill them and plant the seeds. I labeled them as we went along. We spritzed them with water, and I sealed them up with tape.

Then we put on boots and brought our mini greenhouses out to the sunny side of the house.

Now we wait—and hope. I didn't plant all the seeds. I'll stagger my plantings and use some to direct sow in the garden, whether or not our little winter (or spring) sowing experiment works.

We finished just in time to get Elizabeth up for her nap. We all took a walk around the block with hats but no mittens, boots but no snowpants. We ran into neighbors and stopped to say "Happy spring" and Kathleen and Elizabeth and their friend from around the corner ran in circles and giggled and shrieked. It was bright and almost warm and we stayed outside until we should have been done eating dinner.

Spring is coming. Today, even with a covering of fresh snow, I felt it.

From ashes

We're in a cold snap, which mainly means I fight Elizabeth about keeping a hat on, I find my fingers getting numb as she fights me about getting buckled in her car seat, I keep the fire roaring at home, and, sometimes, the pipes freeze.

Right now the fire isn't roaring because I'm letting the furnace do the work of heating our old house, since that's the best way to get the warmth to the far flung and poorly insulated kitchen, pantry and bathroom. I'd love to have the stove cranking out heat that would warm me in a cozier way than the furnace can do, but the timing isn't bad in that we needed to empty out some ash anyway.

I haven't put wood on since this morning. The flames and all chunks of wood disappeared in early afternoon. After I got the kids to bed, I opened the stove and was surprised how warm it was. I raked over the gray dead ash and was met with warm orange glow of still live coals. A bit of tinder, a puff of air and—poof—we'd have flame.

Hope is like that. Beaten down, trampled, extinguished again and again until you are certain you can hope no more. And then a word, a thought, a possibility and the glow begins. When Henry was in the hospital I was amazed by how tenacious hope really was. My own hope burnt down to ash many times, until I was afraid to hope again, until I wasn't sure I could hope again, and then the fever broke, he moved one notch closer to coming off the ventilator, doctors began murmuring about going home . . . And then he died. Could anything quench a fire more thoroughly? I remember not wanting to hope when I was pregnant with Kathleen, but being unable to stop.

My hope burns fairly steadily these days, but I remember when it was reduced to ash. And I remember how amazing it was to see it spring to life again. To warmth and hope.

In the Coming Darkness, A Light

I love the fall, this downshift season.

I love the colors and the crisp air and the delightful sunny, warm days. I love the gold of the light through yellow leaves and how it can seem bright on even a gray day.

I love layers and sweaters and pulling the covers up at night. I love soup simmering on the stove and hearty casseroles baking in the oven. I love squash and kale and apples. I love clearing the dead plants out of the garden—and still running out to snip some kale or broccoli or mustard greens or parsley.

And I don't really mind winter, but December is another story. I still dread it, still get anxious about how to make space for joy and grief, celebration and commemorating. I made some headway on it last year, but I don't trust it. Grief is not linear. I know this. I've forgotten and been reminded. December was better, but I'm wary.

But here is my light going forward:

I was talking to my aunt tonight and the day for grieving families that I go to at Children's came up. I talked about how it felt right for me to go back in late fall, in what was the middle of our time there. And, I said, It's right before . . .

Your dark time, she finished for me.

Yes.

It won't always be dark you know.

I started to cry. Maybe part of me knew that, but part of me needed to hear it, because sometimes it feels like it will always be dark, despite the light most days. I have come so far in these almost five years. I don't need to reread my journals or this blog to recognize that (though I like to do that). I have come so far in these four years ten months. There will be other milestones, but I think (hope) believe December is the last big hurdle. I pushed back last year to reclaim the month to take back some of the joy. I will keep doing that, but I suspect that there is something beyond my control that needs to happen through grief work, through time. Maybe it will take five years or six or eight or ten. I don't know. But it won't always be dark.

My cousin died 15 years ago. I don't know when the darkness lifted for my aunt. Perhaps it faded slowly so that she wouldn't have been able to tell me if I had asked. I didn't need to know when it happened for her. I know we all have our own timelines.

It won't always be dark you know.

It feels a little lighter already.

Love for today . . . and tomorrow

A few weeks back, the Dragon Mom article kept popping up on Facebook. I gave a heavy, knowing sigh when I read, "finally do the hardest thing of all, a thing most parents will thankfully never have to do: I will love him to the end of his life, and then I will let him go." I know what it is to do that, but I don't know what it is to live through my son's life knowing I'll have to do that. 

Instead, I had a really sick baby who was expected to live. There would be meds and follow-up appointments and perhaps more surgery or other procedures. There would be equipment to figure out and insurance and other programs to navigate. It would not be easy, but we worked under the assumption that Henry would make it. He'd get through the ups and downs and interminable hospital stay and be okay. The definition of okay kept shifting, as much as I tried to pin it down, but okay kept being the assumption. 

I loved him constantly, but I had to remind myself, more than once, to live in the day. Before Henry's surgery as we were struggling with the oxygen monitor's frequent beeping and trying to fatten him up, I kept looking ahead, counting down days, weeks, months til he could have his surgery and lose the oxygen and we could really start our life. Except the clock was already ticking. "I'm wishing away his life," I realized, long before I knew how short a life he would have. So I reset and focused on enjoying him as he was. I hated that oxygen monitor, but I loved my boy and our peaceful mornings. I focused on what he could do, not what his peers were doing, not what he couldn't do. And at the same time I set up Early Intervention to help him do all that he could do.

When Henry was in the hospital later, I at first refused to bring things from home—blankets, clothes, toys, music. Having stuff at the hospital felt like admitting we were going to be staying, and all I wanted to do was get my boy home. It took me a long time to realize that I was doing it again, wishing away his life in wanting to get out of a sucky situation. "This is his life," I reminded myself. As much as I hated living there, hated the anxiety and the separation from Brian and the machines and the lack of privacy, it was his life, and with that realization I changed. I read to him more and played music and set up routines and took pictures. I brought blankets and clothes and hung up the cards people sent us.

Even as I settled in, I told him about what we would do when we got out. I told him about the friends he would meet and the farm down the road. I told him about riding the school bus when he got bigger and working in our garden. I told him about where we lived and about the vastness of the ocean that he would finally see some day. I loved him for the day and believed the future for him. 

I had stripped down my dreams and expectations, but I believed he would come home. I believed he would one day go to school. I believed he would visit my family. I believed he would live and grow. 

We don't know how long we have with our children. We should love them right now, today. But, unless we know they have no future, parenting isn't just loving them here right now, part of parenting is believing they will grow up and helping them along the way. 

The idea of just loving them today, noble as it sounds, isn't possible long term. Or rather, loving my children today is possible, but acting solely on that isn't. I have to say no sometimes because things aren't safe or healthy. I have to say that I'm working sometimes, not because I'm attached to furthering my career, but because part of parenting is keeping a roof over my kids' heads and putting food in their bellies.

I try to find balance. I try to do my work and get food on the table and clothes clean and still say yes when Kathleen says, "Wanna play play dough?" or "Read a book" or "Let's put on crowns and take pictures." I love my kids today. It's why I set up a cozy corner under the dining room table and lay down with them to read story after story after story even as I felt my back seizing up with the sciatic problem that's plagued me since my first pregnancy. It's why we turn up the music and dance together as a family most nights before bedtime. It's why even when Kathleen doesn't get a story before bed because of all her stalling tactics in getting ready, I sing the "Kakeen" song to her, the song I made up that tells her how very loved and wanted she is. 

Yes, by all means love your child today. Take time to notice them as they are, as they grow, as they change. Take time to snuggle and sing and read stories and listen to them. But, unless you have a reason not to, believe that you will watch them grow and change. That belief is hope and love too. 

Notes from December 2007

I'm cleaning my office and in the file holder next to my desk, I got rid of folders for Christmas 2009, a prospective client that got bought out by another company, a project that I finished too long ago to remember. Then I got to a folder of a company I never worked for, though I accepted a project from them. Inside were two sheets of paper, one full page of my notes from a conversation on December 11, 2007. The other has no date. It has half a page of less detailed information about the project and a list:

BCBS form mail
get sympathy cards—Amy & her mom, Heather & Pat
TY notes—Henry's hand, list from mom
finish bears
finish elephant
make heart—Henry
penguin

During those last couple of weeks Henry was in the hospital, I was thinking about starting to work again, dealing with insurance, sending thoughts to others who had lost a loved one, thanking people for the many kindnesses they had done for us. I was making ornaments for Christmas gifts. The bears were for my nieces and nephews to go with the book Henry Hikes to Fitchburg, which I had already bought for them. I think the elephant was for my aunt (her version of my cardinal), the heart was for Henry. I think the penguin was for my friend Tricia's daughter, who was a penguin for Halloween. (That came to me just as I was writing that I had no idea who the penguin was for.)

I was not thinking that my son was going to die.

The list doesn't say how worried I was to bring him home, how terrified I was that he would get sick and we would end up in the hospital again, how anxious and exhausted I was.

On the other side of that paper there is a list of things for parents on one of the other floors—massage and reiki twice a month, yoga once a month, snacks, acupuncture, pizza, community art, coffee and Sunday papers . . . the bottom of the sheet is cut off. I remember how hard it was to start to find out about these things. You needed to be in the hospital a long time. You needed to hang out in the family center or the parent/patient resource rooms and talk about needing to get out or have a break or de-stress. There were times I felt like there was a secret language I didn't know that I needed to know in order to get help. Then coordinator of the parent coffee hours on our floors started offering me a slot for reiki whenever it was available. One day, I didn't make it to coffee hour and she left a cookie at the nurse's desk outside of Henry's room for me. It made me cry, that simple kindness. All of this rushed back with this not quite full page of events and times.

I  opened this folder expecting to find useless info about a project that never happened, pages I could easily recycle, but instead I found notes that showed where I was weeks, days, before Henry died, busy, hopeful, looking forward to Christmas, deciding I really should try to get back to work, and completely oblivious to where I would find myself on December 17.

I'll tuck these pages back into my file holder, and next time I clean out my office I'll look at them again. Maybe then I'll be ready to toss them or maybe I'll hold on to them, useless and mundane as they are. Sometimes a to do list is hope incarnate.

Easier, but . . .

Despite my meltdown of the last couple of days and the angst about scheduling my c-section, this pregnancy has been much easier than my last.

I can actually look ahead and think about having a baby.

Last time I couldn't order diapers or get clothes out of the attic or imagine bringing a baby home, certainly not right away. All I could do was fill up my freezer, easy meals would be good no matter what. When I packed my bag for the hospital, I wanted to bring a bunch of extra clothes in case we didn't come home right away. Brian had to convince me to just put a pile out on my chair for somebody to pick up if they needed to. When I went to the hospital, I made sure I had Carol's number. Just in case.

This time I have diapers back from the friend we borrow from, and the newborn clothes are in the closet. I'm trying to figure out where to fit the swing amid Kathleen's things. I've found coverage for my one on-going freelance gig. This time I'm not thinking about bring stacks of clothes for my self, but of packing my Henry book and the yellow blanket to get through the 17th. I'm thinking about having Kathleen come to the hospital to see her new brother or sister. "Bay-beee," she'll say. "Eyes! Noooose!" It is one of those bittersweet moments, and I fully expect it to happen.

I am better able to believe that this baby will be born alive and healthy, that we will stay in the hospital only the normal number of days post–c-section. So the anxiety sneaks up on me sometimes. Of course it is still there, but so is hope, a calmer, brighter hope than last time, a less desperate hope.

I actually had that OB visit today. Everything looks good, sounds good. Baby is moving, moving, moving. "Everything is okay." It's what you want to say when come through the door after an OB appointment, whether you're crying or not.

Today, everything was okay. The baby seems fine. I baked cookies. Kathleen pointed to the stool next to her and told me "Seat," so I sat with her while she colored. The sun shone. Today I held it together and it wasn't so hard.

99%

If I weren't pregnant, I'd be relaxing with a glass of wine right now and then going to bed early. But I am, and dinner is running late, so no wine and probably not an early bedtime. 

I had my first ultrasound today. Everything looks good, but I'm exhausted. 

I was anxious when we went in. Kathleen cried because I couldn't hold her, so they sent Brian out of the room with her before we even started. As he was walking out of the room, I burst into tears. He was able to come back in when she settled down, and I pulled it together. Still, I was wiped out when we were done. 

At the end of my ultrasound when I was pregnant with Kathleen, the doctor told me that I had a 1% chance of having a baby with Down syndrome because I had had one. Then he patted me on the leg condescendingly and says, "That means 99% chance everything will be fine." Thanks for the math lesson jackass. I think it was the same doctor today. He said the same thing minus the leg pat. 

I did breathe a little easier after we saw a heart with four chambers, normal flow between them. I was relieved to see no cleft palate, no spina bifida. The baby is measuring right, brain, kidneys, diaphragm all looked fine. . . 

I take this as good news, knowing the limitations of this technology. But 99% doesn't mean a whole lot to me. I've been the 1%, the less than 1%. Odds are meaningless. 

I am relieved that things look good right now. 

I am hopeful that this baby will be born healthy, happy, alive, and whole come December.

And I wait, day by day, week by week, until we get there and see for sure. 

Hope in bloom

I had been thinking about Henry's tree, the peach tree I planted for his first birthday, before I knew that peach trees are hard to grow. Vicki was talking about the Japanese magnolia that she got as a gift when her son Evan died, and I thought of Henry's two trees, the hawthorne that's thriving and the peach tree that has struggled. 


The danger, of course, of planting a living thing as a memorial is that it will die. And in some ways this is not so terrible. What's a tree compared to your baby? But really it seems awful, one more bit of death, one more failure, one more thing that didn't work out. 


Henry's tree is planted in our backyard, a companion to the peach tree we got as a wedding gift. Our wedding tree got off to a good start. Then two summers ago, leaves yellowed and began to fall in early summer. Exploring, we found the lower trunk being liquified. We thought the culprit was a peach tree borer, though further research suggests more likely a rust of some sort. Last year, our wedding tree lost its fruit and then its leaves and then stood there starkly, naked, dead. This is no metaphor, no symbol, despite the statistics. Brian and I are doing fine, though there was a period last spring when all of our communication felt like  a challenge or a debate. 


As our tree slowly failed, I watched Henry's tree, wondering if it would succumb to the same fate. The leaves yellowed some, and I found a soft spot on the trunk. I sighed and waited for the inevitable. 


The other day, I noticed the faint pink buds swelling on Henry's tree the other day. Now they have burst wide open. 


Hope in bloom. 

It brings me back

It seemed like the memories of being at Children's had faded some. I could remember but not be immersed. I could see what had happened without being thrust back onto the floor. This seemed like a good development.

Then last week, somebody asked me if I had any advice about support for her friend whose son is being treated at Children's. As I tried to think of what had helped, I found myself back there walking those halls, lost and floundering, exhausted and anxious. My chest was squeezed tight and I could barely breathe.

Yesterday, my friend Tricia posted that she had spent several hours in the ER at Children's with her daughter, Riley. She lived at Children's for months and months with her baby too. I read her comment on Facebook and hoped Riley was okay, but at the same time, my heart jumped up and choked me. I remembered bringing Henry to the pediatrician and ending up in the ER. I remember bringing him into the ER after finally being released from the hospital. And I remember how stressful it was to simply approach the hospital again, without a sick baby. I thought of her arriving at the hospital and all of what I had been through there flooded back, and I imagined her struggling through her own morass of memories weighed down by the fear of the current situation. I send her hugs and hope.
***

I am still haunted by the three months I spent there with Henry. I don't look back and think that was nothing compared to losing him. It was a different kind of unbearable, that I had no choice but to bear.

When Henry was getting close to discharge, I got more and more agitated. As much as I wanted, no needed, to get out of the hospital and get him home, I was terrified. How could I keep him well? Could we see family at Christmas or did we have to isolate ourselves that much? Would I miss signs of withdrawal?  Would he ever come off oxygen? What, really, could we expect for him? What if he got sick again? Would I miss symptoms of his condition worsening? What if he had a low-grade fever (DANGER, DANGER) in my mind that doctors who didn't know him brushed off? I had been away for so long, could I bear to barricade myself in the house with him all winter?

And the answer were: I couldn't keep him well. Even before we left the hospital, he had a little bug brewing in him. We did see family at Christmas—by that time he was gone. We weren't home long enough to have problems with withdrawal or try to wean him back on oxygen or figure out what he could do. He did of course get sick again, and I was paralyzed, to scared to bring him to the hospital, and he got worse rapidly. And he had a fever, and still, I was unable to bring him to the ER. I ended up in for most of the winter without him, lost in the blur of missing him.

I'm sitting here now, taking deep breaths, shaking off the grip of hospital fear that grabbed tight onto me, but every now and then I find myself smiling a little half smile as tangled up in that anxiety find the little glimmers of hope and kindness that sustained me through those three months that feel like a lifetime.

It does often now feel like a different lifetime, and yet, it seems I am not as far removed from it as I'd like to think I am.

Two candles

We had a small party for Kathleen today, and two candles were lit:

the one on the cake that remained lit for only a moment or two,

to mark the life that has lasted a year and is still going strong,

and the one on the table that stayed lit all day,

that still flickers in the next room

to mark the life that didn't make it a full year, the one I still miss.

One birthday, two candles.

Two babies, much love.

And I continue to teeter between this awe and wonder and amazement

that she is here and strong and laughing and moving and learning

and the despair that he is not.

Among family and friends, I was able to smile much today,

to feel the joy,

but in the letdown of people leaving and a quiet house almost put back in order,

I find the ache growing.

So aware of and thankful for what I have.

So aware of and missing what I don't.

I am holding onto the belief that this will get easier again,

that this dark month will pass and heaviness will lessen.

The sadness will still be there.

I will still miss my boy,

but in the day to day I will get by.

I will see the light again;

tears will not be a daily event.

For this I am holding onto hope,

because I need to believe it.