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Ten long months of trying…
The 28th of every month hits me like a truck of bricks. I somehow keep it together for a month and then the floodgates open.
I haven’t been writing about my feelings publicly, because I don’t know what I’m feeling. I compared our life to a quilt, but we have been randomly patching pieces of the fabric of our life together, too distracted to finish any blocks. We both have been struggling with joy and sadness mixed into unrecognizable jumble. When majority of people happily hang baby clothes in the closet I had to take every piece of Sara’s clothing off the hangers to make room for her brother’s stuff. The pack of diapers to take with us to the hospital are sitting next to the urn with her ashes…
I know there are other people in the world in similar situation, but that doesn’t change the anguish I feel.
I still feel very fortunate, having the most amazing life partner and the wonderful community I can live in. But I find it harder and harder to be in the spotlight. I’m a shy person and I feel uncomfortable with public displays of emotions. I had to become the open and approachable person, because I felt it’s my job to help other people around me to express their feelings of loss. Being helpful is my way of “making it better” and I found a temporary purpose, in suddenly purposeless life. But now people have moved on and in their personal universes Sara is just a distant memory. For us the feeling of distance of those memories is the most frightening place to be. We are clutching onto her clothes trying to smell her sweet smell, but it’s gone now. And we are loosing her all over again. Intense grief gives you amazing clarity of your life, but as you learn to live on the brim of the black hole of despair, things get very hazy and more distorted than ever. It gets harder to talk about your feelings, because you know how painful they are. You felt so much pain that you start to hide away, trying to escape the pain, because you don’t know how much more you can take. You braved it so far, but what if the next bout of pain will be the proverbial straw that broke the camel’s back?
We have been self healing with baking and cycling, but as the birth of our boy approaches we know the floodgates are about to burst open on a whole new level.
J questions how can he love his son when all his love has been devoted to his daughter. I don’t feel that love is a pie that can only be divided into a finite number of pieces. We will grow our love for him, just like we grew it with Sara. Our love for him will forever be burdened and enhanced by our love for her. Her departure gave him an existence, but also burdened him with forever grieving parents.
Well Tomas, if there is some kind of cosmic purpose I can only say, you picked this yourself and we never claimed to be a normal family 😉

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Our “Plan B” life

This morning I heard a wonderful podcast and the speaker declared that life is all about second chances. That you are rarely the number one pick, but sometimes you can make it big from being picked as number two.
I absolutely agree and it feels like my whole life is the “second chance” version.
When I went to NYC my plan was to save up to pay for a year of university in Australia. I’m fascinated by this continent and their immigration rules made it possible for someone like me to be legally employed to support myself through the school. But just one month into my adventure of a lifetime my mother’s house burned down and my university fees payment became a new roof above my family’s head. So Canada became my Plan B.
I met my amazing husband, built a life and a family. Our Plan A was not without its difficulties, but we had it and we were happy. Until the day Sara shook in my arms and closed her eyes forever.
And here we are, scrambling to make Plan B.
People tell us we are an inspiration, that we are brave… I don’t understand why thou? What makes me brave? The fact that I haven’t killed myself? I would never do it, because I can’t stand the fact that I would hurt my loved ones by doing so, plus I’m too afraid of pain to actually execute it. So I’m stuck with Plan B, continuing on, somehow.
I never intended to be pregnant again, because my body took a huge toll during my previous pregnancy and during the two very dark years of depression that followed. Yet here we are again, expecting our new bundle of joy. We are living the Plan B life we never wanted or wished for, but I have to remind myself that four children and their families somewhere in North America get to live their Plan B life too. And I wish that they will make it big, even thou it was not their first choice.

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Fall

My favourite season, maybe because of the orange color everywhere. It also feels like the season for closure. All the growing is done, it’s time to reap the fruits of our labor and prepare for the quiet, dark and cold days when one feels like fuzzy pajamas should be the only attire allowed.
Our summer has passed in a haze of tears. With fall the answers to why should have come, but the coroner’s report simply stated; “natural cause-pneumococcal meningitis”.
But when we looked up description of this disease we know that Sara did not exhibit typical symptoms that would have given us early warning about what was to come. The statistics also state that this is by all accounts very rare disease. Only one to two cases per 100,000 people a year…that is only 350-700 people each year in the entire country. Out of those affected only one in ten dies, so each year only 35 to 70 people in our country die from pneumococcal meningitis. All these have preexisting conditions that leaves their immune system compromised. They might be under two years of age with weak immune system or elderly. Sara was perfectly healthy eight year old…
What was supposed to be the answer brought in more questions. Three months of life without Sara seems like an eternity. Each day starts with tears and end with them as well, we still take turns in crying, most of the time. In my mind the feeling of her forehead under my fingers, the softness of her hair that I would feel when laying down before she fell asleep, is disappearing and I’m scared one day it will be gone. It feels so long since we hugged for the very last time.
It’s almost comical how the state of our house so closely resembles our lives now. Sara’s room is full of stuff from our living room, building materials and mementos from the past months. We can’t reach her bed and lay in it. We subconsciously don’t allow ourselves to be there, because laying in that bed alone is the ultimate proof that Sara doesn’t exist anymore. Walking around our house we can pretend she is upstairs, but when her room is empty at night all the pretense is gone and tears fill our eyes.
We have been renovating for almost three months now. Building new life for ourselves, our new, different, family. So far so many things were finished only to be undone, replaced, improved. In our everyday life we are finding ways to cope with the reality of our situation. We walk forward only to sidestep or walk backward the next day. They say grief is not linear, it doesn’t get better progressively. We are expected to move on, but how do you move on from loosing your second grader in just one day? No one moves on, we only learn to move forward. We teach our bodies how to function with a big hole in our hearts. This hole makes everything so much harder and we frequently gasp for air when tears unexpectedly fill our eyes.
Just like today. I went for a little road ride, for a moment I felt “normal” my grief was hidden somewhere deep in my brain only to resurface with a sight of fuzzy teddy caterpillar on the road. Sara loved those creatures, she collected so many last fall, put them in a jar and marveled each morning how much they pooped at night.
So I went on, continued my ride at my own pace, bursting into tears every 100m or so with each new caterpillar appearing on the road surface. That is my life nowadays, I can’t move on, but I try to move forward.

Three months of sunny darkness

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We have been struggling hard this week, but nothing was bringing relief. I looked at the date today and it suddenly dawned on me. Three months ago we were awoken after ninety minutes of sleep and given the news. Dr Marthy was factual, he even suggested cutting the top of Sara’s skull off to reduce the pressure of the swelling, I remember asking him why when even the deepest part of her brain is showing signs of extensive damage. Jason was silently staring into the the black hole that had just opened in this room, suspended in time and space. Right now we know know that this cosmic event had changed us, our perception of time and space, reality itself. The black hole opened again on Thursday that week when Sara was pronounced clinically brain dead. That day is written on her death certificate. But she “lived” for another sixty hours or so. It was a gift of time to say goodbye, we received this time in a trade for her organs. I was upset that her lungs will be wasted, but the wonderful counselor from the BC Transplant agency simply replied; “they are not wasted, they couldn’t be used, there is no eight year old child with this blood type on this continent that needs those lungs. Be glad that nobody needs them…”
She was right, I needed that reminder, because being too close to the black hole distorts our vision for sure.
We have to remind ourselves her organs are still alive. Her heart is beating in someone else’s chest, their parents get to hug that warm soft body of their precious child. I’m happy for their happy ending. That feeling makes hugging empty space little easier, usually, but not today.

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The case of Mondays
Few people like Monday, I think I used to be OK with them, not any more.
Every Monday we wake up to our own version of the “Groundhog Day” movie. The alarm goes off, you open your eyes and hope normality has returned, there is our girl sleeping in her bed. I would try to sneak downstairs and have my morning coffee to get myself ready for the everyday struggle with her clothes bothering her skin, her OCD monster tormenting her in yet another way…
It only takes couple seconds to see the clues though. My side table has books about parents and their dead children, the empty heart pendant is hanging on my lamp and Jason is hugging Sara’s monkey in his sleep.
I know we are about to repeat yet another week of this bizarre altered reality. I’m getting used to the empty feeling, it’s becoming somewhat manageable, but that’s on good days. On Monday morning we cry a lot. People cry about the present or the past. When you loose a loved one you start to cry about the future. All the experiences that will never be.
Last night Bob’s Burgers TV show started again, we watched new episode for the first time without Sara, she loved this show, she was our Louise for sure. In this episode Louise got sick, for the first time in six seasons, she had a fever, but she got better…She even sung about not dying, but getting better instead.
We couldn’t even look at each other after the closing credits, combining our pain was way too much this time.
Then we watched brand new Simpsons, yet another of Sara’s frequently watched cartoons. The opening sequence of Bart rolling through Springfield starts changing and J suddenly gasps for air, tears bursting out of his eyes…“Its Adventure Time!” No! WTF? Universe, are you playing some freaking sick joke, or secret tribute or god knows what!? First her little hero doesn’t die from fever and then you morph Bart into Finn!!!
We are just holding each other tight and crying into each other’s t-shirts, one thought in our heads…“Sara would have loved this so much”
But she will not see this episode, and these two episodes will become secretly banned in our house. If they start playing through the auto play feature in the Plex app I will quickly rush to skip to another show. This censorship might last weeks, but right now it feels I should expect months instead.
So it’s Monday morning, beautiful fall day is unfolding outside, but the sun can’t reach inside my heart today, I’m in way too deep, because it’s Monday, The Groundhog Day again…

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The quilt of life
I do believe only in few things, and serendipity is one of them. The moment you aimlessly wonder through the library isles and a book catches your eye, without a thought you open it and there, on the page you discover the sought after answer to question burning in your mind. I believe in that kind of serendipity.
When aimlessly wondering through the virtual library at my fingertips I came across a quilt by Penny Schine Gold.
I have never met this lady, but in an instant I felt connected to her. She lost her son in a car accident just before he left for college.
In the healing years that followed she returned to quilting and made some amazing pieces telling the story of her loss.
If you google the quilt pictured above you might also find a photo taken at a quilting fare…
You can see people walking by, some stopping and staring at the writing. You see people’s expressions. I now recognize those looks, the sudden, terrified, embarrassed , struggling to be a nice person, but at the same time to somehow escape this unpleasant situation, look on their faces. You only get those when your child dies or your loved one commits a suicide.
I love Penny’s guts for bringing this piece out there.
It’s so simple, just bold, sharp edged letters sewn onto a fabric. But that’s what loosing your child is. It’s that simple, no frills, one moment you have your child and the next day her bedroom is empty. The clarity of the letters is the pain of loosing her, it cuts through your heart and brain with relentless repetition. Some days you feel that the razor blade might be getting a tiny bit dull, but then Monday morning comes and you realize that Reality had broken into your house again and spent a whole night sharpening it yet again.
Your whole life gets covered by this layer of fabric, all colours disappear and life becomes temporarily just black and white.
But I can’t live without colour. And I can’t live without sewing either.
I’m not an experienced quilter by any means, but I I’m finding the almost mind numbing repetitiveness of piecing bits of fabric together soothing. Quilting so accurately mimics my life now.
You take little scraps, carefully or just randomly lay them next to each other until they make what quilters call “the block”. Which is really just a square or rectangle that can be easily attached to another block. Then you sew it all together and hope the finished piece doesn’t make you barf :).
I take little bits that I find each day, put them together and hope for the best. So far I have a pile of bits, mostly.
I started on some blocks, like the house renovation one and I’m very happy to see this block emerging.
With other blocks it’s still only pile of random pieces. I don’t have the mental strength to sort through them just yet, I’m too attached to these piles, I’m still in the hoarder’s state of mind.
I’m waiting for the day when my heart and mind can agree and I can sort through my piles of mementos and can truly evaluate them. I know my quilt will have some bits that are not pretty, some will be pure mistakes, but that makes the quilt authentic. And if you are into the “everything is perfect in my life” feel free to use photoshop, because it only alters your image, the original is still the same, not so perfect.

The anchor

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When the unspeakable happens we are given an anchor, it’s so big and heavy we can’t move, our body aches and we just wonder how can we even move ever again. We sit still, immobilized, but there are many dear friends around us helping us to lift that enormous anchor. We try everyday to lift it, we get stronger every time we try. Some days we are like the top athletes training for the olympics, some days we just sit there and stare at the anchor fantasizing about its sudden disappearance. We remember how it felt, but we never felt the joy as intensely as we fell the pain.
To people around us we look so ripped these days, but to tell you the secret, we found this great web site, the body suits are custom made and you can request some pretty weird shit, it’s the internet after all. Like who would want Madonna’s arms these days, like seriously…
So everyday we put on our suits, inflate the specific parts with air and we look perfectly ready to carry our anchors. Beneath the suit our wimpy muscles hurt like hell and our heart is ready for the heart attack from the enormous strain.
To our surrounding we appear fine, our social norm dictates that the only acceptable answer to the “How are you?” question is FINE, THANK YOU. But we are not fine, the anchor so awkwardly placed around our necks is really starting to distort our spine, we can no longer stand up strait with chin raised high. I tried to lift my chin three weeks ago, but that jerk Reality showed up and really yanked on the anchor chain, I almost felt like I will be paralyzed from neck down for the rest of my life.
When we come home each night we carefully undress, exposing our bruised bodies, we look at each other, hug and cry. We try to help each other to carry the anchor, we’ve tried putting them together, they do appear lighter that way, but the problem comes with synchronizing our steps, so fry we trip too frequently to make this efficient, but hey Rome wasn’t built in a day.
So to all our wonderful friends, we love you guys, we can’t make it without you. We also feel like we are an added burden to your already packed lives and we feel extremely awkward about that.
But we need you, because the fall is coming, it will be quarter of a year without our Sara and Halloween and Christmas are coming. We are trying to figure out our new holiday traditions. But even as I just sit here and type this I feel the anchor doubling in size.
Ok, I will go and put on my strong suit, because my brain is pretty willing to accept the deception of perceived strength, I bet it’s some self preservation technique I haven’t read about yet.
At least it’s a beautiful sunny day outside.

Back to…

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The school year starts, Sara would be starting grade three.

But she is not. Her ashes are in her closet, her school backpack right next to them. J searched for the memory box from the hospital to day so he could touch and smell her hair…

I can’t bring myself to touch them. I loved to play with her hair in the evening, we would read a book and then she would ask me to stay until she fell asleep. I would rub her forehead or play with her hair, it was so soft and delicate…

I’m feeling a bit detached from the pain of remembering her. I’m trying to heal, to cheat my brain into happy because only then we can conceive. I feel we might struggle to start a new life. I so desperately wish to make J happy again. The two of us are not enough for him, but I believe we can be a whole family again one day soon.

Please…

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I feel drifting apart from everything and everyone, I’m searching for healing, but the book from the library has been on the shelves for three years and no one have ever opened it…
Nobody needed to know what to do when their child just vanishes…
Some days are better, some are worse, some just feel like a deep well, the light barely shines in. I try to do the things I put on my to do list, but my desire to finish these tasks is just inhibited by the feeling of pointlessness. It’s strange to feel this way, to know it’s ok to feel this way, to know it might be just temporary…
The picture of my beautiful girl in my mind is now fuzzy, I stare at photographs and the life pictured on them is so distant, I start to doubt it ever existed at all. But all around me are the silent proofs of that life, Sara’s bedroom, her toys, her artwork around the house.
The deep helplessness is illuminated by glimpses of hope, but yet I feel like the fool building the sand castle on the beach. With every wave of life the foundations of my castle are being eroded, taken away by the merciless force of the water while I frantically add, repair, improve, not noticing the tide is coming in…
The fear of my failure is clenching my heart and I’m scared what I would do if I fail to be a mother again. Can I accept it? Can I live with this broken dream forever? I know I will, but right now the future seams like mountains covered by very dark clouds and I don’t like rain…

New life

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When your life changes and your child becomes only distant memory what do you do?
I know we are not alone,but we feel very lonely. Few people can truly feel this deep emptiness that follows you every second of your day.
I wonder how to cover this void, because I already know I can never fill it up. Many people have hopes to be a family, to have children. We had our family, we planned it, lived through the ugly times, but also experienced joy that only your child can give you.
Now we are yet again at the beginning of our journey, this time we know what to expect, but my body is carrying the burden of time. The fear of not knowing if we can ever be a family again is more than I can carry.
Many people call us amazing and an inspiration, I don’t know about any of that. We all fight our battles, big and small.
I catch myself many times a day in the same situation; “How are you?” I know that you don’t actually care how I’m doing but I wish to have a monitor on my chest that will show you my true thoughts at that moment. “I’m fine and what about you?” While my brain screams ;“ my kid died, well, where do I begin, it fucking sucks, it hurts on so many levels, I’m trying to hold this pile of shit together but my hands stink and remind me constantly that this right now is just a pile of shit I was given. Since I don’t believe in God, I have no one to blame and have no faith to convince myself that the pile of stink are actually wonderful gifts.”
So today again, same as yesterday I have smelly hands, but I try to keep those hands busy and hope the stink will not linger on the creations.