'tis the season

For every adult in the kitchen there appeared to be two or three children running between rooms, blitzed on sugar from the chocolate fountain and marshmallows they were using for dipping. Wrinkled party dresses and cheeks smeared with sweetness, they were enjoying the freedom granted by their parents’ own distraction – mainly champagne and a recently restored vintage jukebox. A head collided with the stem of my glass and kept moving, unfazed, back to his friends all up way past their bedtimes.

.::.

'Cardiomyopathy is a chronic and sometimes progressive disease in which the heart muscle (myocardium) is abnormally enlarged, thickened and/or stiffened. The condition typically begins in the walls of the heart's lower chambers (ventricles), and in more severe cases also affects the walls of the upper chambers (atria). The actual muscle cells as well as the surrounding tissues of the heart become damaged. Eventually, the weakened heart loses the ability to pump blood effectively and heart failure or irregular heartbeats (arrhythmias or dysrhythmia) may occur.'

.::.

One of the younger boys came in, crying over some rough play happening in the next room. He’d been wearing a toque the whole time and now pulled it off as he found his mother. He was soothed with some kisses to his cheeks and bald head before running back to the action.

“Yes he’s bald. He’s got leukaemia, he’s been in remission since March. We’ve got two more years of treatment.”

She went on to tells us about how she worries for his future; as a teen and adult will he lead an incredibly healthy lifestyle, or will he feel invincible having beaten cancer, and abuse his perceived strength?

The hostess, the wife of a friend, went on at length about how scary it must be – the thought of losing a child. How utterly terrible it would be to lose an only child.

It was right around the time the walls began to close in on me.

.::.

'Cardiomyopathy is nondiscriminatory in that it can affect any adult or child at any stage of their life. It is not gender, geographic, race or age specific. It is a particularly rare disease when diagnosed in infants and young children.'

.::.

He found me on the front porch, trying to regain control of myself, tears streaming down my face. I was as embarrassed as I was upset and wanted to scream when he asked me what was wrong. I stared through the picture window at the enormous twinkling tree he and their two kids had decorated that morning. I forced some deep breaths and pulled out my mobile to call a taxi.

.::.

We finally received Sadie’s post mortem report a few weeks ago. Any hope I had been holding on to that it would reveal some extraordinary insight about her condition was dashed. Waiting had given me a reason to tuck that part away; I could put off thinking about future children because I didn’t yet have all of the information I needed. There had to be something else, some tiny scrap of information resembling an explanation for it all. Going through the document with her doctor made me face what I have been refusing to believe since he told me so on the day I met him. We would likely never find out the cause.

With nothing left to wait for I know I should be thinking about what I expect from the future. Our genetic counsellor told us that based on what information they do have, the odds of us having another child with cardiomyopathy are 1 in 10. She chose to pitch it as a 90% chance that any future children will be perfectly healthy.

My husband asked me afterward whether I’d buy a lottery ticket given those odds. My answer was simple. Of course I would. Because I know I would survive losing.

We’ve all become much too aware of the fragility of life, regardless of what took our children from this world. I would like to hear how other babylost mamas who went on to have more children came to the decision to try again. How long did it take for hope to outweigh your fear?

darkness, and light

Within light there is darkness, but
do not try to understand that darkness.
Within darkness there is light, but
do not look for that light.

~ zen quote ~

Settling in for a wait at the chiro's office, I grabbed a copy of the National Geographic and sat back to read the feature article: "Our Vanishing Night" It explores how man's desire and need for light had affected our lives, our reproduction, and that effect is spilling into the animal world, affecting migration, predatory patterns, and our relationship to darkness.

"Light is a powerful biological force", it said, birds get drawn to it and that resulted in heads-on collision onto buildings. Nocturnal animals are at higher risk of being preyed upon because man's urge to have light had resulted in them being more easily exposed to predators.

The presence of artificial light is affecting animals' breeding and migratory patterns, and not to their advantage. Turtle hatchlings are lost by the hundreds of thousands each year because they are confused by the artifical light source and lose their orientation, and thus lose sight of the ocean, where they need to go home to.

In humans, rates of breast cancer has been linked to nightime brightness of neighborhoods.

The article ended on a grave note- with our power to create light, we have forgotten the scale of our being; we have become blind to our place in the Universe... we think we have control, but in fact we may be wreaking havoc, upon our very own world.

++

I closed the magazine and thought of how light is so often over-rated. Overly esteemed. Overly yearned for. I pondered my evolving relationship with light and darkness...

When I was young, I was scared of the dark. I had to sleep with the light on. Then an adult will come and turn off the light after I have fallen asleep. My grandma had to come with me to use the toilet during the middle of the night, otherwise I would leave a whole trail of lights through the house.

Then, at some point, I finally awakened to the wisdom of my body and of Nature and I realized that my body needs the dark. It needed the dark to be fully rested. It needed the dark to repair itself. It needed the dark to regulate my biological rhythms. Light resembled noise to me at night. They were intrusive, talkative and annoying. At night, I needed the dark. Now I like to sleep under a thick blanket of darkness. It feels safe, and neccesary. And not just me. The plants too, and the animals. Everything needs the dark.

And then of course, once, I saw an entire sea of stars in a black sky. Enveloped by darkness, with no light trying to assert its presence, I felt I saw through and through galaxies and universes and witnessed every single star in my eyes, every single twinkle of light traveled from light years beyond to meet with my mundane being and I was bowed over. Totally humbled. Without the dark, no beauty; no gasping in the face of the power of what just is.

++

From the moment we learned that Ferdinand had died, it was darkness for me. The nurse dimmed the lights to give us privacy after the horrible news was announced. But I guess symbolically it was a pronouncement of our baby's fate, and a gesture of acknowledgment of how our lives had become from that moment forth- dark, gloomy, sad, oppressively sorrowful.

So often and so many times I have written of sitting in the dark, being in the dark. Strangled by the dark. Suffocated. Blinded. Trapped.

But I also found comfort in it.

The light was too piercing. The light, it represented blatant joy and insensitivy of the other. Like the friend who wrote me about her glorious day with her children, gallivanting with horses and singing to rainbows. That was a blinding light she sent me, piercing into my darkness, saying "Boo!" to me in the throes of my woes. It seemed to me she said, Look! I am in the light. Life is beautiful and gorgeous, can't you see?

And I pulled my blanket closer around me, shut my eyes to the glaring bright, and turned my face to the wall.

++

The thing is, I need both. Darkness, and light. They are inseparable, and essential.

Darkness is not forever, it will turn around and show its other face, the light.

But, to have darkness turn on its own time is different from me flicking on a light myself. Or someone swaying a kerosene lamp right in my face.

I have seen the light, I have.

It comes from the depths of darkness. It comes from the other pools of darkness. The light comes from fellow bereaved.

And therefore it was welcomed. That light is not glaring, loud or self-righteous. It had nothing to prove. That light, from fellow bereaved, is just the right glow. Like a warm, kind nod to me, acknowledging my grief journey and sometimes, just that, and it flickers off again. But I know then that I am not alone in the dark, and darkness cannot be forever.

++

To know that light will come again is important. Darkness is vital- for healing, for rest, for solitude and contemplation. For dreams and for beauty. Light provides something different. Like an exhale after a long holding in of the breath. A change in pace and rhythm. An opportunity to evaluate things in a different light.

We celebrate the Winter Solstice. We watch, as the days grow shorter and shorter, and the nights, longer and colder. We hold out till Winter Solstice, then, we turn off the artifical lights and throw a match into the fireplace, welcoming the light back, enjoying the blaze of warmth and glow while darkness still surrounds us. We go out in the cold dark night, bundled up but still feeling the nippy cold. We raised our heads and look to the dark sky, and over the horizon, wondering about the next new day.

This year, I want to sit and wait and watch the first sunrise after the longest night of the year. I want to see the first light come through; I want to witness that promise, for centuries, that the light shall return, even after the longest night. I need to see that the promise will be kept. I will watch the first light crack through the dark, and watch the embracing dance between dark and light as the long night gives way to the new day. I wish to see that intimate connection.

++

I need both: darkness, and light. They are essential to my being, important to my grief journey. In between are subtle nuances, but I shall not explain.

Photo by Nicholas Hughes, From Verse 1 of the series In Darkness Visible

I loved this photo, the works by this photographer. He seems to have found that transient time and place where darkness and light fuse seamlessly. They need to strike just the right balance as he releases the shutter... so we can see that darkness and light indeed do need each other, and with passion too.

Whatever you need this season, whether it is winter or summer for you now, I wish for you whatever you yearn for and whatever you need, to nourish yourself from the very depth. Be it light, be it darkness.

back and forth, back and forth

Three days after we’d arrived at the hospital I was standing over her, staring in amazement. Her legs and arms were cycling away, occasionally bumping herself in the head, not used to the weight of a heavily bandaged arm. How could this beauty possibly be sick? My little Munckin. She smiled at me, a real smile, for the first time. My heart came close to exploding with something a thousand times stronger than love.

“Oh, Munchie! What are we going to do with you?!?”

In spite of our surroundings, I was ecstatic to see that perfect miniature grin.

.::.

“I thought you would be rolling on the floor, screaming and inconsolable.”

“You’re so strong.”

“Do you know how many women would have ended up in a mental ward?”

“I don’t know where you find the strength.”

“My God Jen, you’re just so strong.”

.::.

When they told me she was gone I didn’t understand at first. A woman, who remains faceless in my memory to this day, appeared at my side. She knelt down next to me and I think she took my hand. We had been pushed to the side to give way to the chaos.

“But... but... they’re still working...?”

Things still seemed to be happening. I was waiting for the miracle I just knew would happen. I was confused.

“I’m so sorry. No. Sadie’s gone.”

Four NICU doctors and nurses who had minutes before raced into the room still stood around her tiny bed, doing what they do. The yelling had stopped, but they were still moving. Machines continued to beep. It wasn’t until we walked to her side that they all stopped and looked up. When I saw how reluctant they were to look me in the eye, I knew. Two stayed with us, unhooking her as they asked if I wanted to hold her.

.::.

There are days that are darker than others. I want to call the office and be free to say, “Sorry, but I just can’t do it. It’s all meaningless don’t you see, because today I’ll be useless to anyone but her. She’s dead and I can’t bear to wash my hair and I really just need to stay at home to be with her.” I start to cry in the shower and hate the world for expecting me to stop and get on with it. The only her left for me to be with is not one anyone else understands.

Yet it’s exactly what I do: stop and get on with it. I smile and charm and make plans for the weekend. I maintain what others have built for me and wonder what parts, if any, I can actually lay claim to.

.::.

It was my husband who told me he’d expected me to be inconsolable. It was meant to be a testament to my strength. Like every other grief related ‘compliment’ I’ve had since. My dear partner, who on the darkest of days when I can’t bring myself to utter a single word, hugs me tight through my fragile silence. Having learned it’s easier to not make me vocalize, he simply holds my hand, finds me a tissue.

“It’s ok honey, cry.”

I am silent. I turn away. No words, inside or out, seem able to do what I feel justice. I wipe my tears and will myself to regain control. I want to tell him how bad it still is, but can’t help but feel guilty for forcing it all to his surface when he seems to have found a safe and quiet place to keep it. I know he hurts. I love him to my core and don’t want to magnify his pain with my own unyielding grief.

.::.

I prop myself up. I make my most valiant effort to be what everyone sees. I hope for balance at best. I wonder if the continuous memories playing like home movies in my mind make me a little too broken still.

What I can’t tell people, the fear I barely allow myself to acknowledge, is that I am terrified of what would happen if I did let go. What if my so-called strength is really just a farce? What if I did give in, outside of my own head, and found I couldn’t make it stop? It feels entirely possible. I can’t bear the thought of being so exposed. Like a fish in a bowl, examined from every angle, unable to escape the waiting eyes of those who used to call me strong. The jig would be up.

In the list of adjectives I’d use to describe myself, strong doesn’t even register.

.:.

I’m still so utterly raw; seven and a half months later, but most days feel I’m now left to navigate this journey independently, even with a supportive and loving partner. I wonder if other Babylost Mamas feel an obligation to keep up an appearance of togetherness after a certain amount of time has passed?

glimpses

Today's post is the first from a new contributor to the Glow in the Woods family: Jen of There's a New Monarchy in Town.

Jen is a transplanted Canadian living in London, England, and a first-time mama in the first raw months of life without her daughter Sadie. She came on board as the 7th full-time medusa after writing to us to say 'thanks for being here', and 'I've completely lost my writing mojo' ...at which point we ambushed her to join our motley crew.

Please join us in giving Jen a glowing welcome--we're grateful to have her voice in our midst, and we hope you are, too.

I look back at photos from our four days in Vienna last month. Austria is damn nice, yes. And who knew it was so good at wine making? I loved the cathedral concert at dusk: Mozart and More. The end note of each song hanging in the air like it was up for grabs.

I like the tucked-away bar we stumble onto. The music is good here. The ceilings low, arched, stone. Peanut shells on the floor, wine savvy staff. We decide to sample the local stuff only.

Let’s have another.

.::.

We sit in a tiny room on tiny pastel sofas surrounded by four tiny white walls. Three, if you consider the one behind me is all windows. The view is the Thames and Big Ben. If you were in a restaurant you’d be pleased. Here, it’s nothing short of stifling. If you were me, across from the specialist who took care of her in those last hours, you’d want to scream back. He takes off his glasses to look at me squarely, Australian accent thick, and I wonder if he barely remembers. His words are clinical. I’ll bet the farm his own babies are alive and well.

“I don’t care if you believe it would have happened anyway. I would have taken however many more hours or days or weeks we’d have had with her if that nurse hadn’t moved her.”

It’s what I want to say.

Instead, I rock, shuddering through my sobs, conscious of the three sets of eyes fixed on me as I struggle to recover. I yank two, three more tissues from the box beside me angrily. I stay silent. I feel weak and my voice has forgotten how to work.

.::.

I am comfortable enough now that my confidence has grown as steadily as my indignation. I am here to work. Why are you looking at Facebook? Why are you complaining about someone else before you’ve even proven yourself? Why can’t someone give me the answer?

I smile. I put in 11 hour days on occasion. I think about the possibilities. I dream of what I was meant to be doing.

.::.

She would have been six months old on August 20th. I tried in vain to not imagine what she’d look like, what milestones she would have reached. I am okay, then I’m not, and then I am again. Okay being a different, different place these days. Grief, like an unwanted tagalong, saunters alongside me daily. She is vindictive in the way she chooses the most inopportune times to surface. I thought Sorrow was only a word used in love poems that include, ‘hither’ and ‘unrequited’.

Not so much.

If you have ever wanted to see what damaged goods look like, look no further.

.::.

We have been sitting in the garden for five hours or more, and the table is now a sea of glass, empty and full. I look from my brother to my friends and back to my husband. I laugh heartily and often, and realize in the back of my mind that this is where hope lies: among family and friends, new and old. I am grateful and then in the next breath I am homesick.

I am the luckiest unlucky girl.

.::.

While I took the four hour round trip to Luton and back to reclaim my passport, he went to our favourite place. Waited for me, had a beer in the pub that was once a jail. He is proud and a bit secretive of the contents of his shopping bag. I am always in awe at how much this process pleases him.

Later, he serves a stunning plate of monkfish wrapped in bacon. I fold my pajama’d legs under me and tuck in. Tastes like lobster. Baby squash, peppers, asparagus sauteed next to the sweetest new baby potatoes I’ve ever tasted. I wonder if there are two people in the room who have missed their calling. He raises his glass.

‘Cheers. To the future, whatever it may hold.'

.::.

Fleeting moments of "happiness" continue to catch me off guard. Do you remember the first time you laughed, or felt hope for the future, after your child's death? Did you feel guilty for allowing yourself to do so?