My Sister, My Stella (BY: Auntie Heather)

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My Sister, My Stella

By:  Auntie Heather (Methven)

Mishi (Michelle) is my only sister.  We are a year and a half apart in age and we have always lived in very close proximity to each other. This,along with many other factors, has created a rock solid bond between us. We have always looked after each other and leaned on each other through thick and thin.

 

My sister has always put others needs ahead of her own. An example of her selflessness was on our first day of university. Michelle has always been brilliant and had the opportunity to go to any university she wanted too (with full scholarships). I was accepted to York but had extreme anxiety over going.  Because she fast-tracked, we had the opportunity to start University the same year.  Michelle decided to go to York as well (years later I found out it was to help her big sister). Michelle was extremely late for her very first day of classes because she was comforting me during a severe anxiety attack. I was throwing up on one of the bathroom floors of the university, Michelle stayed with me the whole time, talked me out of my anxiety attack and then made sure I arrived safely to class. This is only one example of many where Michelle has helped me. It might sound cliché but I would not be the person I am today without my sister. Michelle is not only my sister but also my best friend.

 

The very special bond I have with my sister has trickled down to Stella. Even before her diagnosis, I would try to see her on a daily basis. I loved to go over to the house before work and eat blueberries with Stella while Michelle and Aimee got ready. I loved it when I was able to pick up Stella from daycare, as soon as she saw me should would get a huge grin on her face and yell “AUNTIE” and come running over to me. I will always cherish memories like these.

 

Since finding out about Stella’s diagnosis I have been desperately trying to spend as much time as possible with her. I see her on a daily basis, whether for 20 minutes or a couple of hours. I enjoy and treasure the time we spend together and I am grateful for each word, smile, kiss and hug she gives me. I love it when she says, “I am Aunties bubbas” or “Hold me please”. I need to see her, when I don’t see her I feel like something is missing and I start to get anxious and upset. I am thinking of her constantly and I cannot even begin to fathom what life would be like without her. Sometimes when I wake up in the morning, I think I am having a surreal nightmare. Then the devastating reality sets in.

 

At the beginning of this journey I had such high hopes. All the doctors said that there is 0% cure for DIPG but I didn’t believe them. I spent hours looking for articles and cases of other children with DIPG and the results were always the same with the children eventually earning their “angel wings”. I continued to be hopeful even after looking at all the statistics, but reality has finally started to sink in. I see her being robbed of her abilities and I wonder why so many have to endure this devastating diagnosis. I don’t understand why DIPG exists in our world and I don’t think I ever will. I just know it is one of the most catastrophic thing that can happen to a family.

 

My sister has helped me through many difficult situations including our DIPG journey. Stella is her child and I should be

the one to shelter and protect her from the destruction DIPG has created; however, Michelle is actually the one who has protected and helped me through all of this.

 

We are currently going through the most devastating journey of our lives. It has brought our family, Aimee’s family and us closer together than ever before. It has also taught me that life is extremely precious, enjoy every second and don’t take anything for granted.

 

I am so blessed and honored to have Michelle, Aimee, Stella and Sam in my life. Nobody and nothing can ever destroy the amazing bond I share with all of them.

Mish and I in the bathtub (ages 2 & 3)…I think Mish looks ALOT like Stella!


Me and Mish at our childhood cottage (ages 5 & 4)

Mish and I were best friends, even as teenagers

 Stella , “my Bubbies’, and I

 

 

 

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A Rollercoaster Ride

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A Rollercoaster Ride

I was watching the old Steve Martin movie, “Parenthood” a few weeks ago and near the end, an elderly Grand-Ma tells the story of how some people who go to amusement parks prefer to ride the Merry-Go-Round.  But “it just goes round and round”.  The Grand-Ma said she loves the Roller Coaster because it has the highest highs and lowest lows.

 

The last week with Stella has definitely been a rollercoaster, and I’m still feeling a bit nauseous from the ride.

 

Wednesday she started to look a little bit ill, and we suspected maybe a UTI or bladder infection.  By Thursday, we had a prescription for antibiotics but we could not get Stella to wake up to take her medicine.  She was sleeping all day and all night, feverish and whimpering.  We finally forced her to take the thick banana syrup while she cried and fought us the best she could—weakly, unfortunately.  Just as we got the final bit of medicine in her she threw up so violently it came out her nose and covered us both in sticky, flemmy vomit.  In despair we washed her off and Aimee and I looked into each other’s eyes intensely.  There was no room for anything in our hearts than raw fear.  How were we going to get the fever down, get rid of the infection, get her pain medications into her if she refused to take anything and wouldn’t wake up?  We finally came up with the idea to put the amoxicillan into her bottle of milk and convinced her to drink it.  By Friday she started to come around a bit, and by Friday evening she was able to enjoy a great evening playing with Gracie.  Saturday she seemed fairly normal and then Sunday, BOOM, she was again sleeping all day and night and unresponsive.  Late last night we tried to give her liquid morphine (which tastes awful), and it woke her up.  She was grimacing and we were trying to give her milk to wash away the taste, but for some reason it was as though her teeth and jaw were sewn shut and try as she might, she couldn’t pry them open.  Her eyes got wide, her arms shook, she made guttural sounds in her throat as she desperately struggled to open her mouth.  Aimee and I panicked, we both cried and tried to force her mouth open first with force and then massaging her cheeks.  It was awful and I felt completely out of control, like being on a roller coaster that is whirling through a dark tunnel where you see no light and feel no thrill, only heart-stopping fear.

 

Finally, somehow, her teeth widened enough to shove a bottle between them.  We lay on the bed and held each other while Sam slept peacefully a few feet away from us.  It was the first time in a long time I felt true despair.  Aimee and I can handle the agony of watching our daughter die slowly.  We can find the strength to continue to live.  We can convince ourselves that Stella has lived a good life, albeit short life.  We can use a combination of therapy, pills and tenacity to rebuild our lives after the greatest tragedy we could imagine.  BUT we cannot tolerate the idea of her suffering, even a small amount.  None of this seems fair, but it especially feels cruel for our innocent daughter to feel any kind of pain, discomfort or fear.  This moment made me feel like I desperately wanted off the ride.

 

At 6:30 Monday morning, Stella woke up— in every sense of the word.  She was bright again, she was singing and telling jokes.  She asked me to take her to buy avocados and smiled at me as we selected the best ones to add to our growing pile at home.  Even the Doctor was shaking his head.  Stella defies traditional explanations of DIPG tumours.  Each morning as I kiss her curls and breathe in the smell of her sweaty skin, I whisper how grateful I am to have one more day with her.  Then I kiss Sam and wish with all my heart that he becomes a healthy and happy adult someday.  This has become my morning routine, almost like a daily prayer or meditation.  A brief moment each and everyday where my feet feel firmly planted on the ground and the roller coaster has not yet begun it’s climb or descent.

 

I always liked roller coasters better than the carousel— carousels made me feel dizzy and disoriented.  But now I long for the predictability of the carousel. The worst part is that I know we haven’t even fallen off the cliff yet.  I know that no matter how many times I have cried for, raged against and dreaded this journey…the worst is yet to come.

 

I already often feel like a kid with her face pressed up against the candy shop window, watching all the other “kids” run around, carefree grabbing whatever they want and smiling and laughing while I’m stuck outside.  It’s not jealousy exactly, more like a longing for that same sense of entitlement and innocence I had just seven short months ago.  I’ve lost the security that you get when you get on an amusement park ride.  Even though it looks dangerous, you just trust and assume that you won’t be dumped onto the concrete when the coaster does a loop-de-loop.  Millions of other people have ridden the same ride for years and years and get to enjoy the ride, laughing and screaming and then get off at the end completely unscathed with rich stories to tell.

 

But Aimee and I got on the ride and the safety bar broke.  I’m beginning to think that I’m not just on a roller coaster, it’s more like a free fall.  And the only thing between me and the concrete is a pillow of hope for the future—but it’s still such a long way down.

 

Feeling Sick—but still beautiful

Faux Birthday Party for Stella on Saturday

Fun with Cousin Gracie on Friday Night

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A Day In Time

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A Day In Time

 

The days continue to pass by, a blur of television shows, cuddles, eating and hanging out with the people we love most in the world.  There are no “special” days where we do amazing and incredible things, because everyday is special simply because we are together.

 

For the most part I can’t tell the days apart, other than therapy on Tuesday’s and our standing dinner-date with friends on Thursday.  Sometimes the minutes and hours pass by so slowly that I wonder if they’re moving at all, and sometimes I can’t believe that so many minutes have melted into hours, days, weeks, months.  Everything has changed but our days have felt very much the same since summer ended.  It’s not necessarily a bad thing. I find great comfort in routine and we have settled in to one quite nicely.

 

At 7am like clockwork, my dad comes over and makes tea for me followed by two pieces of white toast cut into quarters, one with honey and one with jam.  Aimee feeds Sam and Stella sits in my lap glaring at the world.  She has never been a morning person, which I’ve always found strange since she is the one who dictates when we get up.  Before all the medications, her wake-up time was 5:15am for over a year.  Bleary-eyed Aimee and I would take turns taking Stella out to the living room to play and feed her until it was time to leave for daycare/work at 7:30am.  Stella would yell, tantrum, throw food and generally be the biggest grump you could imagine and I would just look at her and think, “Kid…why do you insist on getting up when you obviously don’t want to be here!??”.  I never got an answer, just scowls.

 

At about 9am after we’ve eaten and watched the morning news with Stella perched on one of our laps, my sister will come across the street with Xavier.  We sit around chatting, sharing stories and planning our day…which is usually no plan at all.  We give all the kids bottles, swapping off whichever one needs something.

 

At around 10am one of us will get up to get dressed and start getting the kids dressed, diapers changed and sometimes (on special occasions!) we even shower.  We take our time, we chat with one another, we cuddle and coo and tickle the boys.

 

Lunch is often early and then we try to get out of the house for a family walk.  Destinations vary…Sobey’s…Library…Starbucks…Shoppers Drug Mart.  Piling Sam and Stella into our new double stroller, a heap of mittens, hats and blankets we never have anywhere specific to go.  We walk the streets where Stella once rode her bike, pass the parks where Stella once swung and screeched, visit the places we used to dream she would go.  But, most of the time, we aren’t sad.  We are happy to be together, happy to be outside, happy to have our family of four.  We know it’s temporary but we try to just breathe in the crispness of winter and watch our children carefully for any signs of a smile.  We collect these smiles like precious jewels tucked into our hearts, hoping we can take them out again someday and roll them around in our hands when we are searching for a warmth that we cannot find.

 

In the afternoon Stella usually curls up in someone’s lap and sleeps for anywhere between 2 and 4 hours.  Whoever doesn’t have sleeping Stella in their lap tries to tidy the kitchen and start laundry while simultaneously feeding and playing with Sam.  We read the paper and visit with anyone who stops by with kind words, food, hugs.  We kibbitz over what to have for dinner and when Stella wakes up in the late afternoon she is usually ready to have a tea party, paint her nails or dance.  So we play until she is exhausted and Sam is screaming in the swing we plopped him in.  We eat dinner and watch episodes of Dora until Stella drifts off to sleep and Sam is sound asleep in his crib.

 

These are simple days.  A far cry from the old life where we would rush out the door for work, dropping Stella off in a run at the daycare, work all day, rush home from work to pick up Stella, clang around in the kitchen furiously trying to cook while also trying to keep Stella from killing the dog, or us.  Rush through dinner, get Stella ready for bed, do dishes, pack lunches, squeeze in homework and school classes iron clothes for the next day, bed.  Begin again.

 

Life nowadays is not what we expected it to be.  It is not what we wanted and it is not what we planned or dreamed.  There is a lot of fear and there are a lot of tears.  But, it is also not without surprise moments of joy and laughter and happiness and gratefulness.

 

Tomorrow is not guaranteed for any of us.  But right now Stella is sleeping peacefully on Aimee’s lap curled in a ball, Sam is lying on the couch laughing at the ceiling and I am wishing I could freeze this moment forever.

 

 

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On Children

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On Children

 

Khalil Gibran in his beautiful piece called “On Children”, starts off by saying,

 

Your children are not your children.
They are the sons and daughters of Life’s longing for itself.
They come through you but not from you,
And though they are with you yet they belong not to you.

I have read this stanza often over the past several months.  It is helpful to think of Stella and Sam as part of the universe as opposed to belonging to us.  In this way, I try to think of them as a gift that Aimee and I have been lucky enough to be charged with looking after until the world decides it is time for them to return to the universe where their spirits will spread joy and comfort to the world.  Sometimes I can think like that, but other times I feel desperate to hold onto my children.  To scream that they DO belong to me.  But they don’t.  I realized that the day the Doctor told us that Stella would die and there was nothing we could do.  No amount of money, love, treatments or prayers would save her  And though she is still here with us, we have watched helplessly as she has begun to return to a newborn-like state.  Ashes to ashes, dust to dust, life to death.

Stella grew inside of me.  From something the size of a poppy seed to a plump, porcelain-skinned baby with a head full of red hair and the spirit to match.  In the last months as Stella’s faculties have started to fail her I feel as though she has started to melt back into my body, where she once grew.  I have become Stella’s legs, her arms, her voice and upon occasion, her eyes.  We move as one.  Wherever I go, Stella goes.  Whatever Stella needs, I get for her.  We are in sync and just as Aimee and I have learned to anticipate her needs and translate her incomprehensible mumbling as her lips struggle to form the words to tell us what she needs.

Living like this is exhausting.  Exhaustion is not the same as being tired.  Exhaustion is something that no amount of sleep or rest can fix.  Exhaustion comes from doing the same thing day after day and buckling under the physical and emotional weight of it.  It’s waking up every few hours at night to give Stella medications, to feed her a bottle, to help her with a bowel movement she doesn’t have the strength to push out on her own. On alternate nights, it’s getting up with Sam in the middle of the night and feeding him a bottle while cars whiz by in the distance, a reminder of other people living busy lives.  It’s waking up and carrying her in your arms to the couch, her stiff arms and legs straight as boards, her head flopped against your shoulder.  It’s feeding her yogurt or avocados and trying to pry her teeth open with words of encouragement and smiles.  It’s sitting for hours on the couch watching Dora, painting Stella’s nails, having tea parties.  Not allowing your mind to wander anywhere because you are afraid to miss a smile, a word or a moment.  It’s eating with either Stella or Sam on your lap, trying to balance a plate of food while arms and legs swing uncontrollably at you.  It’s taking turns feeding, changing and playing with your 11 week old and your 2 1/2 year old (who needs just as much care as your newborn).  It’s walking to Sobey’s everyday and having 35 avocados in your house (at $2 each), because that is the only thing Stella wants to do.  It’s a mix of deep appreciation, sadness, hope and dread that circles your soul like a group of buzzards.

Stella is still happy.  She still smiles and plays and eats and drinks, but Aimee and I see differences in her from two weeks ago, and are scared for what lies ahead.  She is starting to have more difficulty holding her head up and starting to show signs that swallowing is getting more difficult.  We don’t know how long it will be until it becomes a real issue, but we’ve started throwing around words like, “morphine pump”…”feeding tube”…”quality of life”.  As long as we are able to focus on being in the moment, life feels happy but when we allow our minds to drift to the past or the future it feels almost unbearable.

I had a dream last night that Stella and I were out for a walk.  In my dream, she was walking beside me like she used to…never holding my hand, because she wanted to be free to run ahead…but then she fell into quicksand and started to sink.  I was desperately holding her by the arms trying to pull her out, but the weight was too great for me and she started to slip.  The strange thing was that she didn’t appear scared or sad, she was laughing gleefully as the quicksand buried more and more of her body.  When I woke up, instead of feeling anxious and scared, I felt at peace.  Our job as parents is simply to give our children the best life possible, and there was no guarantee of how long that time would be.  Stella and Sam are both well cared for.  They are not scared, they trust Aimee and I completely to meet their needs and keep them safe and happy to the best of our abilities.

Stella and Sam are both happy right now.  They are surrounded by love and parents who would do anything for them.  For now, that’s all they need.  Aimee and I have given them everything we have and we must find courage in her strength and energy in Sam and Stella’s smiles.

 

On Children
 Kahlil Gibran

Your children are not your children.
They are the sons and daughters of Life’s longing for itself.
They come through you but not from you,
And though they are with you yet they belong not to you.

You may give them your love but not your thoughts,
For they have their own thoughts.
You may house their bodies but not their souls,
For their souls dwell in the house of tomorrow,
which you cannot visit, not even in your dreams.
You may strive to be like them,
but seek not to make them like you.
For life goes not backward nor tarries with yesterday.

You are the bows from which your children
as living arrows are sent forth.
The archer sees the mark upon the path of the infinite,
and He bends you with His might
that His arrows may go swift and far.
Let your bending in the archer’s hand be for gladness;
For even as He loves the arrow that flies,
so He loves also the bow that is stable.


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Stella’s Soundtrack (BY: Auntie Juju)

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Stella’s Soundtrack

I started making Stella’s funeral soundtrack back in June when we found out she was dying. I wanted this task. Music is a language I understand, and Stella is not a hard personality to translate. Every time I get on iTunes or Youtube to look up songs my field of vision- and my search field- is full of light and stars, rainbows and sunshine- but not unicorns- oh and driving for a bit because she was obsessed with cars last summer. They are all typical images around the loss of a child (except for the cars) but they apply to Stella in ways that make them uniquely hers.

I’ll start near the end, because it seems my relationship with Stella has been working that way too.

Not unicorns: Stella is a very real kid. She doesn’t hide what she likes and what she doesn’t like. She asks for what she wants and doesn’t wait to be offered. Nana became that way near the end of her life, which happened to coincide with the time that I knew her, but I’m told she wasn’t always that way. Stella was always that way. She used to intimidate me a bit, the way forward children can intimidate adults when we don’t know what they’re going to say and our insecurities assure us that they will out something bad about us that nobody knows. With Stella what you see is what you get, which is true of all kids to an extent but with her it’s really true. I absolutely revere this about Stella now, and I am building this capacity in myself at a good pace thanks to her.

Driving in cars: Stella and I have been on missions for coffee, tomatoes, bubbas, bagels, ice caps and a host of other staples in paddle boats, a battery operated land rover, cars at chuck-e-cheese. Sometimes I drive, sometimes she does. Sometimes Gracie does. Sometimes we forget our bathing suits and have to turn around. Sometimes one of us has to pee. We don’t usually go anywhere, but time with Stella is always travelling forward now- at a clip or a snail’s pace- travelling closer to navigating our lives without her physically here. A lot of this journey for me (maybe just for me) has been full of gratitude for the Stella-shaped puzzle piece I now have carved out in me- solid, vivid and permanent memories of each minute she has sat on my lap, relaxed in my arms, whispered in my ear and the series of smiles I have been lucky to see.  but that isn’t about driving anymore.

Sunshine: Stella can appear gloomy, and expressionless given what she’s going through. The high contrast of her delight can be startling, like an intense ray shining right in your eyes when you are staring intensely at a cloud trying to explain to someone how it looks like the virgin mary and you don’t expect it. Her hair is a sunny colour. She is always warm.

Rainbows: Rare, and memorable, and an amazing gift of nature that I have only seen a dozen times that I can remember in my thirty-two years. The day after my Nonna died I saw the biggest one I have ever seen anywhere but over Niagara Falls, in a schoolyard at Harbord and Euclid, back when Andrea and I were just hooking up and Joey was smaller and much less annoying. It was like a rainbow that kids draw in preschool, stretched in an arc across the entire sky. Stella is one of those things that you see and you bask in, and just want to share, and call other people over to see, and want to stop time just to stay in it, and you try to photograph it but the photo doesn’t capture it- if you’re lucky the photo will trigger your memory instead.

Stars: There are a bazillion stars in the sky. My sister is one of them. My Nonna is one of them. Looking up helps me remember that we have all lost people, a bazillion people, to other worlds. Stella feels halfway there already in a comforting rather than in a scary way. I think of her when I look up with Gracie at night. Gracie and I have a special affection for the sky and we talk about clouds and sunsets and sunrises and stars more often than you would expect of a three year old and her parent. I have thought about the stars as linked to death probably weekly since I was nine years old, because her name was Celestine and it is nice to think of her up there. Stella has become a pivotal part of the universe for those of us that love her, she is and will be a daily thought for a long, long time and the constant nature of the stars makes them a good concrete place to put my memories of her too.

I will post our playlist for her once it’s done. Burn it and listen to it, and smile for having been lucky enough to know her or even know of her.

I saw Stella yesterday. She says my name in a way that is a-mazing. It raises a surge of gratitude in me every single time she says it. She can stretch it out to be a whole minute long sometimes. Juuuuuuulaaaaaaaa. It’s amazing.

Little Stellie you have changed me so much.

Celebrating Mommy Aimee’s Birthday

(Juju, Gracie, Aimee, Stella)


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