Happy Birthday Dear Stella

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Happy Birthday Dear Stella

This time two years ago,  Mish and I were running around, trapped in the madness of planning our child’s first birthday party.  A party that, let’s face it, really was for us given that a one year old has no idea what’s going on at their first birthday party, nor do they ever remember it.  It was a day that we had hoped for and dreamed of long before Stella was born.  Mish and I would often find ourselves sitting and wondering together.  Wondering whether we’d have a son or a daughter, what he/she would look like, sound like, be like and wondering what flavour icing would be all over their face when they turned one.  We all remember those embarrassing photos of ourselves at our first birthday party – cake all over the face, smock dress that was only cute in 1978, wall paper in the back ground with some variation of orange and brown stripes.  These are the photos that our parents covet.  These are the photos that Mish and I set out to get of Stella.  And we did.  65 people attended that party – a number that greatly outweighs any guest list of my birthday parties over the last 35 years.  The party was a hit.  It was fully programmed from start to finish with activities, games, arts and crafts and a song circle.  The food was catered and the icing that ended up on Stella’s face was butter cream.  It took Mish and I a few days to recover from the pure exhaustion of it all.

Today is Stella’s third birthday – a day that much to our pain, horror and disbelief, we never thought she’d live to see.  On Sunday, our family and friends came together to give Stella a birthday party fit for a Queen.  Mish and I woke up that morning with heavy hearts and tired eyes.  Both of us wondering how exactly we were going to get through the next 12 hours.  This day that once seemed so exciting and joyous to us was now held tightly in a vice grip of polarizing and confusing emotions.  Mishi and Stella share a birthday.  Stella wrestled her way onto the planet on Mishi’s 30th birthday and she’s joked about how her daughter had stolen her birthday ever since.  On  the days leading up to the party, Stella was having what we call a “tired” days.  She was drifting in and out of sleep all day and most of her speech was incoherent.  Swallowing was tough which caused frequent spit ups.  They were so frequent that we had to resort to putting a bib on our three year old daughter to protect her perfect skin from getting a rash from her soaked shirt.  The day of the party looked equally as bleak.  She was lethargic all morning and when the time came for her to leave for the party she started to cry.  There’s something about her cry now that breaks our hearts in two with every whimper.  It’s a tearless cry, and the noises that come out of her throat are almost seal-like.

I arrived at Variety Village, which is where we had the party, to help our family and friends set up early.  Variety Village is an incredible and accessible community centre that Stella has frequented her whole life.  Auntie Heather has been taking her clients and students there for years, and it was thanks to her connections that we were able to pull the party together there on such short notice.  As I feverishly ran around getting the party room decorated, Mish, Stella and her dad stayed at home to get ready.

It wasn’t easy for her, but my incredible wife mustered up all the strength she could find within her to take a deep breath and get Stella dressed for the party.  Strapping her contorted body into the car seat in Poppa’s van, Mish pulled herself together and climbed in to sit beside her girl.  Stella cried on and off throughout the 15 minute drive.  I was at the other end waiting for her.  I was nervous – wanting, hoping, needing everything to go well for Stella, Mishi – for everyone.  When the blue van pulled up I could see Stella’s little white teeth through the tinted glass window.  I swung the door open yelling “Stella, it’s your party!”  And there she was.  She was perfect.  Sitting there dressed in pink from head to toe, wearing her favourite hair band that she used to says was for “big girls”, and a shirt with an ice cream cone and her name on it that was a gift from two moms in Texas.  She had a big pink ribbon over her heart that said “Birthday Girl”.  She looked at me grinning from ear to ear and my heart fluttered.  With her eyes like saucers she let out a big “YAY!”  I carried her in and asked her if she was excited to go to her party.  She said “ya ya ya” and wiggled her little body as we walked down the hall.  As she entered into a room filled with balloons, family, friends and the world’s most spectacular birthday cake – she laughed out loud and at that moment, the world stood still.  Her friends arrived one by one and each time a new person entered the room, Stella pushed her chest out and tried to sit forward as if to say “look at me, it’s my party!”

We all piled into the change room to get our bathing suits on.  A change room that I used to dread going into before Stella was diagnosed as it was always a real challenge to get her ready for swimming.  Last year, my biggest problem was trying to get dressed while Stella took her bathing suit off, looked me in the eye and peed all over the bench and the floor, and now it was trying to find a change stall with a bed in it so that I could lie my precious girl down in order to get her dressed.  Oh how times have changed.  She giggled at us as we got her into her bathing suit and smiled all the way to the pool.  When we entered the pool area, Stella smiled as if she was the Queen of the pool.  The staff at Variety Village had pulled out all the stops for Stella.  The pool was a sea of hundreds of brightly coloured plastic balls that danced around with the swirls from the bubble jets.  All of her friends were there and she was happy.  My heart was full – broken, but full.  We got into the pool and her face was beaming as Mish floated her on her back.  She cackled as she tried to blink the water droplets off her eyelashes.  We took turns swimming with Stella and holding her as her little body, that is usually jammed, bent and stuck in positions that she has no control over, was for a moment, weightless and free.  The next hour was filled with laughter, splashing and playing in a big orange kayak that somehow found it’s way into the pool.  Stella took turns with her friends going down the slide into the pool.

After drying off everyone poured into the party room.  Stella sat in her mamma’s arms as the party unfolded.  Balloon’s were getting dragged all over the room, kids were running around and Stella was smiling.  Much to her surprise and total excitement, Stella’s “Uncle” Brad serenaded her with a stomping rendition of “oh Susanna” which he changed to “oh Stella” of course.  Seeing the kind of pure and utter joy that ignites in Stella when Brad sings to her stops my heart every time as my eyes quickly overflow with tears.  Brad’s concert was a hit with everyone and Stella bounced her way through each song.  Then it was time for the cake.  The moment that seemed impossible to me.  It was time for me to light candles on my child’s cake for the last time.  I recruited Stella’s beloved Uncle Tristan to help me carry the cake.  I needed someone to share the burden with me (even if they didn’t know I needed them to).  Biting down on the insides of my cheek was my poor attempt to stop my trembling chin from wobbling off my face while Tristan and I carried the cake, trying desperately not to drop it – as it was a total work of art.  It was a cake in the shape of a cup cake – Stella’s favourite and it was phenomenal just like Stella.  Stella and her big cousin blew out the candles and it was time to cut the cake.  “I did it” I thought to myself as I looked up only to find a sea of swollen eyes.  Poppa Noel bravely played “happy birthday” on his trumpet – a family tradition.

We did it.  We all did it.  Our family and friends came together to help Mish and I give Stella a birthday party fit only for her and I’m proud of us.  When the day was almost over and Stella was getting ready for bed she said “happy birthday” in a faint whisper as she grinned from ear to ear.

Happy birthday, dear Stella.  We are glad you were born.

Stella First Birthday:

Stella’s Second Birthday (playing with some of her new toys):

Stella’s Third Birthday.  A pool full of friends:

Brad serenades our girl:

Stella’s Birthday Cake (thanks Christine!  www.mollycake.ca)

Happy Third Birthday to our most precious girl! 

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A House Full of Love (By: Aimee Bruner)

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A House Full of Love (By: Aimee Bruner)

We live in a tiny East York bungalow.  Over the past few years, Mishi and I have found a certain comfort and satisfaction with keeping our small space neat and clutter free.  Mishi’s focus has always been on keeping the house tidy and mine has always been on keeping it clean.  We’re good match that way.  As I look around my living room from the corner seat on the couch (Stella’s out for a walk right now which is why I’m allowed to sit in her spot),   my sightline is filled with lollipops, toy pumpkins, towers of Dora books, a cast of puppets, and array of baby blankets, gift bags, half empty bottles, a bassinet and a double mattress in the middle of the room.

The mattress is for the team of incredible people that take turns sleeping over at our house to help care for Sam.  I haven’t been able to totally care for Sam or Stella on my own yet due to my ridiculous delivery injury.  In the beginning, I couldn’t even hold them – a feeling way worse than the physical pain I was enduring at the time.  I feel a lot better now and things are getting easier but we still need help  at times managing both kids because Mishi’s time needs to be focused on Stella for the most part and I’m still healing.  Our once clean and stark kitchen now houses a bottle sterilizer, drying rack, loose change, piles of home made baked goods, charging cords for the various cell phones and blackberries visiting our house, stacks of “Thinking of you” cards, bottles of morphine, anti-siezure and anti-nausea medication and an hand written schedule.  The schedule is written out on lined paper with sticky drops of morphine scattered throughout the page.  This is the schedule that our family and friends have created to keep track of all of the people that come in and out of the house to care for us.  Mishi and I rarely see the schedule but we often hear our family and friends competing to get their name on the list.  Various shifts, duties and chores are assigned and taken care of for us on a daily basis.  Tea and toast for breakfast with Poppa and Auntie Heather, laundry, cleaning, cooking, taking the garbage out, bottle sterilizing, organizing, scheduling visitors, making Stella laugh, holding Sam and bringing us lattes – you name it and they do it.

This is love.

The fireplace mantel in our living room is now buried under a display of drawings that Stella has created with her Auntie Juju over the past few weeks.  There is a collection of books beside the couch that continues to overflow onto the floor more and more each day and a hospital bedside table hovers beside the corner seat of the couch.  This is where we keep the essential supplies to get whoever is sitting on the couch through the day.  It’s littered with half filled cans of Pepsi, books on grief, trashy magazines, the Toronto Star, Dora figurines, a magic wand, a bag of half licked lollipops, pencils, nail polish, Kleenex and Stella’s collection of treats that she’s saved up from the past few weeks.

For a long time, the cluttered and cramped state of our house pushed down on me like a weight.  A weight that gets heavier as crumbs stick to the bottom of my feet each time I attempt to walk across the floor without tripping on one of the hundreds of items currently inhabiting floor space in our house.  Lately however, as I look around our house, I’m overwhelmed by the incredible sense of love that all of this represents and the word “clutter” quickly exits my vocabulary.  The “stuff” that pours over every surface in our house is not clutter.

This is love.

Our house has been completely infused with love by our friends, family and the community of complete strangers that have come together to take care of our us.  For that, our family of four will be forever grateful.

 

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Hope and Heartache

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Hi everyone,

 

Thanks so much for all your caring and offers to help.  I thought I’d post a quick update to let you all know what’s been going on in the Bruner-Methven household.

 

It’s hectic.  It’s loud.  It’s fun.  It’s overwhelming. It’s full of love. It’s full of tears.

 

First of all, Stella ended up to be a stellar big sister/big cousin.  She is obsessed with holding Sam as well as Xavier and the four of us have spent many happy hours on the couch snuggling under blankets, just a pile of warm bodies and love, while wind and rain pelt the windows behind us.

 

Aimee is recovering pretty well.  We’ve been lucky enough to have a steady stream of family and friends volunteering to come over 24/7 and help us out.  We have one person designated to take Sam for the night, feed and snuggle him, and a second person designated to help me with Stella’s night time medication and assist with transporting Aimee and getting her meeds as well.  It’s been a delicate balance trying to ensure we have enough help, but also enough quiet time as a family to create some nice memories.  Any worries I might have had about Sam being born into a sad household have been obliterated by the huge outpouring of love and affection he has been surrounded with since the moment of his birth.  I was terrified that having a newborn in the house would be triggering to me and that I wouldn’t be able to hold him or bond with him.  I think Sam and I have a long way to go before we get as close as Stella and I are, but that will come in time.  The important thing is that I am able to appreciate him for being himself, and don’t find myself comparing Sam to Stella as I feared, or looking to him to fill the hole that Stella’s illness has created into my heart.  Sam is different.  He is a new beginning and comes free of the baggage I have with Stella, a tiny bundle of innocence and hope for our future.

 

It turns out my sister also injured her pelvis during delivery as well (I would say, what are the odds, but I am throwing my hands up regarding the universe at the moment), so she’s also been bed-bound for the last five days.  It’s been hard on Stella because she’s used to seeing Auntie Heather everyday, and has been missing her terribly.  A few days ago Stella asked to go over to visit and it was so successful she has been splitting her time between Auntie’s house with Xavier, and our house with Sam.  With both babies she is extremely affectionate, giving them lots of hugs and kisses.  It’s pretty incredible to see her immediate connection with the boys and her want and need to smother them with love.  She says, “I love you very much” to both of them—something we repeat to her often, but that she doesn’t usually say back to anyone.

 

Emotionally, it has been a very difficult time for me.  Having two births so close to an imminent death feels unnatural and has thrown me off balance.  Aimee, as always, seems to be faring much better than me despite her physical difficulties.  For me, it feels like a huge sigh just got let out of my body, and now I’m not sure which way to go anymore.  We were hoping for so long and so strongly that Stella would get to meet Sam, that now it’s happened there is a bit of a “down” feeling—like after the buildup of Christmas, there is this feeling of, “now what do we have to aim for or look forward to”??  As much as I’ve been working at living in the moment, more and more I find myself dreading the future and feeling “ripped off” that this moment, when we became a family of four, was supposed to be the culmination of our dreams to have two children and instead it is a reminder of all we have to lose.  I have found myself feeling depressed much of the time.  Depression for me is like carrying around a fifty pound weight on my chest all the time.  It makes me feel tired and grumpy.  I have moments of pure happiness, but they are tarnished by the tears that come all too easily nowadays.

 

The only time I really feel safe is when Stella is seated on my lap and her warm weight grounds me while Dora The Explorer drones on endlessly in the background. It often feels like I’m watching my life from someone else’s body.  When people remark how strong we are being, I want to laugh wildly and crazily at them.  I don’t feel strong.  I barely feel human.  I can’t even predict the next hour for our family, let alone the next week.  It’s a terrifying feeling, like falling out of a plane with no parachute and just hurtling through the air with your eyes closed, no idea when you will hit the ground.

 

But today, against the odds, here we are.  A family of four for the time being.  Laughing, loving, crying, mourning, waiting, watching, LIVING.

 

Couch Snuggles


 

Sam…hope

 

Uncle Tristan takes Sam for his first walk

 

Sam and Xavier

 

 

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My Bubbas (by Auntie Heather)

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My Bubbas (By Auntie Heather Methven)

Dear Friends,

The last three and a half months have been an emotional roller coaster for my family and I. It started on June 24th, 2011 (a day I will never forget) and it still continues to this day.

I was heartbroken when finding out that my curly red headed angelic angel was diagnosed with a terminal cancer and the doctors said she had around 3 months to live.

I was horrified and shocked when looking through hours and hours of websites and research, trying to find a cure for my Stella. I was constantly on different DIPG support groups and this horrendous DIPG has taken the lives of too many innocent children. There has hardly been any progress in the last 35 years with finding a cure for DIPG. The sense of helplessness and hopelessness is too much too bear.

I was devastated to see my sister fall apart with depression and anxiety. I am Michelle’s big sister, yet I cannot protect her and guard her from this atrocious situation her and Aimee are both forced to deal with. I feel powerless because there is nothing I can say or do to take away the DIPG or pain she is constantly going through.

I was depressed to see Mishi and Aimee’s close family members and friends falling apart. We are all coping with Stella’s diagnosis in different ways. Everyone has been very determined to keep strong in front of Stella but when Stella is not around the courageous front disappears, exhaustion takes over and the despair sets in.

I feel that my way of coping in this unfair tragedy is denial. I see her losing her abilities one at a time and I see her medication constantly increasing, yet I am always hoping and praying for a miracle. I haven’t truly accepted that she might not be with us one day. I am fearful to think about how I am going to handle the rest of her deterioration.

I have only broken down in front of Stella twice since the diagnosis. Stella does not like it when people cry and both times she said, “Don’t cry Auntie it’s o.k. I will fix your boo boo with a band-aid”. If only I could fix the DIPG. Stella and I were watching television and there was a bunch of children riding on horses. Stella looked at me and said “Auntie when I’m big I ride the horsie”. This was one of the times that I broke down in front of her. I looked at her with tears overflowing in my eyes and said “Of course”. I am grief-stricken that there will be things she wants to do that she will never have the opportunity to do.

Although there have been a lot of negative emotions on this horrific journey, there have also been some positive.

As a family we have never been closer and more supportive of each other. I have spent more time with my family then I ever have before, it is time that I will treasure and reflect back on with many cherished memories.

Aimee and Mishi have made sure that the last couple of months have been spectacular for Stella. She has been to various cottages, Sesame Street Land, play dates with her best friends, monthly Stella birthday parties and Christmas in September. They are making sure that Stella is a constant wonderland full of happiness and bliss.

Stella is only 2 and a half years old, yet she has touched more lives than most adults. Our families are blessed to have so much love and support from the community. Family, friends and even complete strangers have been inspirational and willing to help throughout this difficult time. There have been numerous successful benefits and fundraisers that have ensured Mishi and Aimee can stay home from work and be with Stella.

Children usually aren’t diagnosed with DIPG until the age of 5. I think that it is a blessing Stella is only 2 and a half because she does not know what is happening to her. She is unable to walk anymore, her speech and eyesight are getting worse daily, she sleeps most of the day, yet she still manages to have her infectious laugh that makes my heart melt like butter. Her high-spirits are a testament to us all.

I am grateful, I was blessed with the opportunity to have Stella in my life. Being Stella’s auntie is truly a gift!! You will always have a place in my heart and soul!!

Love, Auntie Heather

Photo by Silke Fischer

 

 

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Gratitude (By Aimee)

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 Gratitude- by Aimee Bruner

 

I’m a big sister.  For the first decade of my life, I spent most of my time carting my little sister, Andrea, around as if she was my doll.  She came everywhere with me – like my shadow.  We were the best of friends who fought like only two sisters could.  When we were teenagers I became the protective older sister (I may have also been a bit bossy from time to time).  I spent our entire teenage years worrying and looking out for her.  As we entered university, I did everything in my power to protect and take care of her.  She didn’t need me to do it but I needed to do it for myself.  When I was 32, I became a mother for the first time.  My sister, who always tried everything first, already had an exquisite little girl named Gracie.  Like all new parents, Mishi and I were like overtired deer caught in headlights for the first few weeks (who are we kidding, months) of Stella’s life.  I remember on day 3, looking a Mishi and saying “how the hell are we supposed to function on such little sleep and remember to do all of the things parents are supposed to do at the same time when we can’t even find time to take a shower?!”  Just then, my front door swung open and my sister blew through it like she owned the place.  She unloaded a new, deluxe, bottle sterilizer and a case of formula that you didn’t need to add any water to.  She set it up and said “here, start using this.”  It occurred to me right then and there, that my little sister was now taking care of me.

 

She is my hero.  I’ve looked up to her for as long as I can remember and she’s taught me more about strength, determination and humanity than I could have ever learned on my own.  From the moment Stella entered the hospital, back when we thought we might be dealing with an ear infection or some other trivial thing, Andrea was there.  Not realizing the fate that lay ahead of us on that June 24th afternoon, I tried to convince Andrea not to come all the way to Sick Kids because we’d likely be out in an hour or so.  She said “Aim, I’m coming.  I just want to give Stella a kiss.”  She arrived 45 minutes later and she never left.  It’s been about 6 weeks since that day my entire world fell apart and she’s been at my side ever since.  She’s created a specific care plan in her head for Stella, Mishi and for me and she works away at it every day.  The first and last phone calls I get each day are from her.  She shows up at our house and always asks us what we need.  I often find her emptying the dishwasher, organizing the recycling or tidying the house.  All she has to do is look in my eyes or read the energy in the room and she knows what to do.  Sometimes it’s taking Stella out so that Mishi and I can sleep or have a good cry or sometimes it’s reading the tone of my voice over the phone and then calling one of our friends who lives close by to come over to make sure we’re ok.  She gives me back rubs, buys groceries and brings us dinner.  After suffering through a horrible migraine and a really bad back this weekend, Andrea still came up to the cottage when she should have been in bed.  I know why she came.  She wanted to be there to wake up at 6:00am so that she could help out with Stella in the mornings, she wanted to be there to make sure that Mishi and I were ok and she wanted to be there to hold Stella – and she did.  Those of you who know my sister, know that her tough exterior is no match for her huge heart and her innate nurturing ability.  She is my best friend and I would never get through life or this horrible reality without her.

 

Mishi is lucky enough to have an older sister, Heather, who is equally as nurturing and who’s incredible strength and courage is undeniable.  Every morning sometime between 5:00am – 5:45am, Stella wakes up and calls for her mommies.  Mishi and I take turns getting up with her while the other one sleeps in.  Without fail, every single day of the week, one of us will stumble into the kitchen to turn on the light and get Stella’s bottle ready only to find Stella’s Auntie Heather sitting on our couch.  She comes over before we wake up so that she can keep whoever is up with Stella company or to take Stella so that we can go back to bed.  Heather hasn’t slept past 5:00am for over 6 weeks.  As the apple of Stella’s eye, Heather never fails to bring a smile to her face.  She comes over to visit multiple times a day and ignites sheer joy in Stella as she walks up our front steps while Stella shrieks at her through the window.  Heather is always there right when we need her.  Just when we couldn’t imagine how to get through the next minute, Heather calls and says I’ll be there in 10 minutes to take Stella swimming.  Without her, running our household, taking showers, eating, making dinner and sleeping would not always be possible.  Heather also has the incredible ability of knowing just how to take care of Mishi.  She can make her laugh at the drop of a hat and she works so hard to make it possible for Mishi to take time for herself.  I can call her in an instant and she’ll be there to hold Mishi’s hand, cry with her or hug her while she’s sleeping.  The worry that I have for both my wife and my daughter sometimes consumes me but when Heather is around, it’s like a weight has been lifted off my chest.

 

The friendship that Mishi and Heather share is like no other.  They’ve always been there for each other and their bond couldn’t be stronger.  I’ve always admired Heather for the human being that she is but now, through all of this, I’ve never felt more lucky to have her in my life.  The incredible toll that Stella’s diagnosis has taken on both of our sisters is immeasurable but each day, they put on their armour and go to war for us.  Mishi and I will never have the words to express how eternally grateful we are for the love and support of our sisters but I can assure you, we would not be the people we are without them.

 

Thank you Andrea and Heather for holding us up and helping us get through each day.

Our sisters, Andrea and Heather with Stella:

 

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