The Strength of Stella

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The Strength of Stella 

Thank-you so very, very much to everyone who has been keeping vigil with us and Stella these last five days, both from near and far.

 

Thank-you for your prayers, your candle lighting, your faith, your food, your company, your love, your cards and your caring.

 

I wrote a blog several months ago about religion and faith and trying to figure it all out.  I’m still in the midst of my spiritual discoveries and journey, but I have to share with you that I am convinced Stella can feel the great powerful energy that has been generated on her behalf because, once again, she is defying what the Doctors told us.

 

Last Tuesday we were told that Stella was fading quickly, that we were down to days with her (the fourth time we have been told this in the last 14 months).  She was sleeping almost constantly and eating only small amounts of ice chips.  Not able to reliably swallow her medications any longer, we moved her to a morphine pump to control her pain.  We spent three days monitoring her every breath.  We carefully recorded the last time we had seen her laugh, or smile.  We watched her struggle to open her mouth even a little bit.  We carefully swabbed her eyes which were crusted over, staring at nothingness. We stroked her hair, told her stories, gave her kisses.  We put a sign on the door indicating we were not longer accepting visitors.  Our families took time off work and school and came to us.  The Doctor contacted the funeral home to confirm everything was ready.  The person doing Stella’s service contacted us with final details.  Aimee and I held each other and kept repeating that we were going to get through this.  Our hearts broke, our stomachs churned, our racing minds kept us awake at night.

 

And then…incredibly…since yesterday…Stella has come back.  Out of nowhere her eyes are suddenly open and clear.  Her colour has turned from ashen to pink.  She is able to drink fluids again.  She is able to eat again.  She has even smiled a few times.

 

We don’t know what to make of it.  The Doctor doesn’t know what to make of it.  We are still cautious about what all this means.  We have not exhaled completely yet, but we were almost giddy with excitement today when Stella seemed up for playing again.  Trying to cram everything in that we could, we took her to the backyard to play in the sand and baby pool.  We gave her a bath. We pulled out her electric car and took her for a drive.  We read books.  We sang songs.  We laughed.

 

We don’t know what tomorrow will bring, but today gave us a hundred more memories and 133 more photographs of another day with our girl.  And I can’t figure out any reason that this could have happened, other than that the universe was so full of love and light for our girl that she decided to give us a little bit more herself.

 

Also below are two blog entries from Stella’s Aunties (Heather and Juju).  They are different. They were written on different days, in different styles.  They are about different things, but they both pay homage to how our girl continues to amaze and teach us about life…and ourselves.

Today our family made some memories!

Another day with my girl:


 

Humour Is A Funny Thing

By: Auntie Juju (Julia Gonsalves)

Humour is a funny thing. Sometimes its about words, sometimes its about the placement of a pause, a facial expression, purely a context. Stellie you have brought out the most basic humour in all of us- makeshift costumes, the animation of inanimate objects, mock stealing, the “I got your nose” kind of humour that delights kids your age, and adults our age in times of crisis especially. It is humour we don’t need to think about, or plan, or even be funny to pull off well. And there are some jokes that really never get old- the ones that end up in a smile, a laugh or a smirk from you. And often the ones that don’t make you smile, make us smile amongst ourselves because we are making fools of ourselves and we suspect that you know it. Maybe we even embarrass you sometimes, because you give us that plain look of a teenager that says do you have any idea how ridiculous you look? Humour has been here ever since your diagnosis- lucky for you kid your family was pretty damn funny to begin with (mostly intentionally). We make jokes about the most untouchable topics now, and we stand on our heads for your sake Stellie, but also for our sake. Because of you we’ve discovered that your Auntie Angie does a spirited british accent and has some intense puppetry skills she would never have revealed, didn’t even know she had, before this. Stellie because of you we have cried much less than we expected to, and laughed much more. We have been training our bodies with your help since last June to retain the practice of laughter as a tool for support, connection with each other, barrier from severe mental health symptoms, and a creator of energy when any of us finds those reserves completely depleted. Stellie thank you for appreciating our humour, from the most basic to the occasionally more advanced, for encouraging it by random flashes of the most brilliant smile. Thank you too for allowing me to feel confident that even when you are physically unable to smile, that you still value our attempts, and translate them, for you and for us, in languages of love, and security, and mutual benefit.

Anything for the promise of a smile: 


Our Extraordinary Girl

By: Auntie Heather (Heather Methven)

The journey with Stella is comparable to the opening tornado scene in The Wizard of Oz. Our families have been swept away and we are constantly churning in a state of fear, uncertainty and unpredictability. I thrive on routine, facts, order and predictability. The unknown drags me down into a pit of anxiety and panic. This whole journey has taken me out of my comfort zone and forced me to confront my biggest fears as well as, fears that I didn’t even know existed. This journey has also taught me valuable lessons and has changed my view, as well as my thinking on a lot of areas in my life. It has made me weaker and it has made me stronger. This year has been the most devastating, yet extraordinary year of my life…if that makes sense.

 

The devastating piece that we have known from the start of this journey is that Stella will die. I still cannot even phantom how we are all going to cope when our girl is gone.

 

The extraordinary piece is that we grew closer than ever as a family. We laugh, cry, vent, support and enjoy each other. I have realized

how precious time with family is and I will always ensure it comes first before anything else.

“The only rock I know that stays steady, the only institution I know that works is the family.” – Lee Iacocca.

 

The extraordinary piece is that Stella was only given approximately three months to live but she amazed us all and is still with us after fourteen months. Fourteen glorious months of special memories and time spent together.

 

The extraordinary piece is how adaptable Stella has been through this all. We were fiercely distressed wondering how Stella would cope when she lost her abilities one by one. We all eventually realized that our

distress was our distress. Our girl would provide us with valuable lessons on endurance and perseverance. As Mishi reminds us “Just because you can’t walk, doesn’t mean you can’t dance.”.

 

The extraordinary piece is how many people have “stepped up” to help us and hold us up through this journey. Mishi and Aimee have always had the most exceptional friends (which is actually a testimonial to them). Family, friends and strangers have joined us, comforted us and assisted us throughout the entire journey and we will forever be grateful.

 

The extraordinary piece is learning from two of the most remarkable mothers in the world. They have shared their journey with all and opened their minds, hearts and feelings knowing that it would put them in a vulnerable position.

 

The extraordinary piece is that Stella has changed the lives of many and has accomplished more in her three short years of life than most adults ever will. We have all learned exceptional lessons from our girl that will stay with us forever. She is the best teacher I have ever known.

The extraordinary part is that Stella is a living treasure of gold, she left her mark on the world and the world is a better place because of it.

 

We have all been blessed with support from others. There have been so many people that have personally helped me navigate through this. It would be unfair if I did not mention two very special ladies that have kept me from enduring a nervous breakdown during this turbulent time. Andrea (my therapist) and Wendy (Daniel’s mom).

 

As soon as I found out Stella had DIPG I spent hours and hours looking for anything and everything I could possibly find about this monster. I joined every on-line DIPG group. I followed blogs of parents who have had or have a child with DIPG. I have read obituaries from thirty-two children who have passed away from this atrocious disease since Stella’s diagnosis.

This is a reoccurring poem that I have seen on many of the DIPG websites; I would like to share it with others:

 

After the death of a child

Please, don’t ask me if I’m over it yet.

I’ll never be over it.

Please, don’t tell me she’s in a better place.

She isn’t here with me.

Please, don’t say “at least she isn’t suffering”.

I have yet to come to terms with why she had to suffer at all.

Please, don’t tell me you know how I feel-

unless you’ve lost a child yourself.

Please, don’t ask me if I feel better.

Bereavement isn’t a condition that clears up.

Please, don’t tell me “at least you had her so many years.”

What year would you choose for your child to die?

Please, don’t tell me that “God never gives us more than we can bear.”

Please, just say you are sorry.

Please, just say you remember my child.

Please, just let me talk about my child.

Please, mention my child’s name.

Please, just let me cry.

And, if you are brave enough, you will share the story of our extraordinary girl.

Auntie Heather sings Stella her favourite songs:

 

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Hi Stellie (By: Auntie Juju)

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 Today is June 24th…exactly one year since we took Stella into Sick Kids Hospital at 6:30am, thinking we would be out in an hour with some medicine and a pat on the back.  19 hours later we received the devastating news of a fatal brain tumor.  Stella was given 3-4 months to live, but one year later she is still bringing joy and light into our lives, albeit in a much different way.

Aimee, Stella, Sam and I have spent today as a family. Gracie, Auntie Angie and Auntie Juju played with Stella in the backyard all morning while Auntie Heather and I took the boys to a beautiful outdoor Church ceremony today where our friends Omo and Arin were also there for hugs.  Then, everyone left and just the Bruner-Methven’s sat together in a heap on our couch.  Stella napped on my lap, Sam napped on Aimee’s lap and Aimee and I held hands and watched the Euro Cup.  It was quiet, just as we hoped and we just focused on being together and feeling lucky to have so much love surrounding us at all times.

Today we have an entry written by Auntie Juju, which we think captures the essence of where we are with our journey at this point.  Enjoy your weekend everyone…and remember, everyone dies at some point, but not everyone lives, so make sure today counts.

 

Hi Stellie

Hey stella,

I want to talk to you instead of about you, over you, around you. How are you? Doctor Kevin says that you aren’t looking back and remembering what you used to be able to do, that you are beautifully present for every change, that you are just here, here, here. Thank you for pushing me to do the same when I see you, to let the world around us, sounds and voices and insecurities and fears, my physical body, my brain, all fade away and just be with you when I’m with you. I get you in doses because I don’t live with you, and because I am your jula and not your mom, and I am grateful for that too in a way because it adds to the odds that I can be here, here, here when we’re together. It’s like seeing a rainbow, it’s so easy to drink it in with all your senses and resist distractions when you know you aren’t going to see that rainbow very often, and that it changes by the second.

I want to tell you that my ocd has been a thousand times worse since your diagnosis, and since you sometimes take hilariously enormous pleasure in other people’s pain, you’d probably find that funny. I find humour in some odd places too, let me tell you. I have never checked the stove so many times.

I want to tell you that I love your smirk more than I can explain, but that a lot of the time I don’t try to make you laugh, just want to lock my eyes on yours and just be there without trying to do anything to change how either of us is feeling. I want to tell you that I can absolutely tell when you’re really looking at me, and I am so grateful everytime you are, that I get to be in your field of vision now and again, and I want to tell you that the air between us is far from dead, that I can feel the space between your nose and mine as soft and vibrant and sweet and full of love. I want to tell you that my time with you while your brother was born was one of my happiest times in the past year, because we bonded over being the only ones not in the hospital, because we were both happier to be sitting on the couch in some ways, and because we’d both rather walk than drive. I want to tell you that you are a really funny kid, and I enjoy your quirkiness and how I never feel anything but normal around you, and how rare that is for me.

I talk to you all the time when we’re looking at each other, and I know you tell me things in those moments that are so much more real than verbal lines that are so littered with consciousness and expectations and rules we were taught. Stella as I watch everyone get sad around you I struggle to accept the present as if I had invited it. I am taking a mindfulness course and the timing couldn’t be better. Thank you for talking to me with your eyes.

Stella I collected the music that will play at your ceremony, and I thought about you the whole time I did that, and tried to interpret the picture of you I have in my head into something people will want to listen to when they are all so acutely missing you. you are really hard to interpret, do you know that? i have never spent more time trying to wrap my conceptual arms around what someone’s spirit feels like. It makes my brain hurt, makes my hands move in funny ways over my keyboard. Speaking of hands I have developed a tremor in them since your diagnosis too. Ha.

stellie I love you so very much. See you Saturday.


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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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Stella a Week Ago (By Auntie Juju)

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Stella a Week Ago (By Auntie Jula)

Stella now isn’t always visibly happy to see me, or even notices I’m there. Sometimes I am standing in her peripheral vision and she calls her version of my name like she has no idea I’m there. Stella has trouble seeing now, some days her pupils are so big there is just a ring of blue, and sometimes they are just tiny dots in a big blue puddle. Stella’s smile is still explosive and arrives when you least expect it, when I am at my most tired and least funny, when the entertainer in me is packing up and putting everything away. Stella now asks for food she doesn’t want, wants to grip sticky lollipops that carry pieces of lucy and the couch and cheetos cheese popcorn. Stella now asks for a present each time someone leaves her house (and it truly is stella’s house), 5 and 1 presents to be precise. I never commit, say I’ll try but I don’t have any money, I’m in overdraft. She says ok but maybe its why she will sit on my lap with much less frequency than a few weeks ago. The only gifts I pack are gentleness and patient attention for her, leftovers from how I was before her diagnosis. I think our nearly 2 days alone during the births of sam and gunga mark the pinnacle of our closeness and I am rolling down a hill now on a long string firmly fixed to her curled up little toes, connected forever but never to be so close again. Stella now will take walks in the ergo sometimes. I took her last weekend, talked about how beautiful the sunset was until I realised she’d fallen asleep. I saw the little blue veins in her face behind her pale thin skin in the context of fading daylight and it was peaceful that time, the feeling in me. I wanted to walk with her for days, her special blanket wrapped around us both like a housecoat. I wanted to keep her head under my chin.
Stella now goes in waves. She wanted to crawl yesterday and didn’t care that she couldn’t really. She still wants to have Tea parties with fred but can’t sustain a storyline beyond drinking and pouring. She wants a thousand things at arms reach and can’t balance them all, she refuses to acknowledge the limits of mish’s lap and the sloppy couch cushions.
Stella now was stella a week ago, and she changes daily, arrives and leaves our lives in steps both forward and backward, morning and night, and we measure in smiles, measure in silence, measure in wait.

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Her…Here (by Auntie Juju)

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Her…Here by: Auntie Juju

I have been avoiding this website like a cancer-infested plague since I heard it went up months ago. I have always been so affected by written words, maybe because I am so much better at expressing myself on paper, so much more (or just basically) confident. This feels like a memorial sometimes for someone who is still here, most of the time really still here. Not because of what anyone is writing, just because. It takes me out of the present and into the projected, anticipated past and I don’t like that.

 

Sometimes I think stella is just messing with me. She’ll be sitting in the car and she’ll randomly say I want the camera. The camera is not within reach, and definitely not within sight but that is what she wants, so I twist and shove things around and find it but it isn’t the camera she wants its the little orange bag that holds the camera. But she wants it zipped up. Without the camera in it. Clipped onto gracie’s backpack. With 3 goldfish crackers in it. Not her crackers- gracie’s. Then she wants to choose a new band-aid, and get a new pony tail, and put on aim’s deodorant by herself, and put the cap back on by herself, and put it back on a different shelf facing southwest. I honestly think that sometimes she’s messing with me. Just to see if I can keep up, and solve the present puzzle with just my two hands and one brain and one heart that is ever expanding for this beautiful, quirky little kid I am getting to know so much better since we found out she is dying.

 

I am really getting to know the tiny curves of stella’s personality, and loving her in her own right, not as my niece or as my daughter’s cousin but as an independent entity, as someone I love who happens to be family rather than a family member I feel a certain kind of love for automatically because I saw her the day she was born and watched her learn to walk and talk and baby bounced her to sleep sometimes on those small occasions when she let her mothers go for a second to suss out the arms of someone else. My niece isn’t dying anymore, stella is. Unconnected now in terms of my grief I will grieve her solely now for who she is that the world is losing as a separate thing to what that losing will mean for her mothers and her grandparents and all the rest of us.

 

It can take a long time for her to answer questions right now, and get her own questions out, and when I’m with her I am determined to allow her as much time she needs to do that because I don’t want her to choose from one of my options, I want to know what she really wants. I want her to climb a staircase if she wants to even if she can’t really climb the staircase.

 

Sometimes her often unfocused eyes zero in on me and it feels just like that saying of a window to your soul. I feel sunshine and lightness and none of the weight we all have around her. I know she can feel my fear and I know something in her is patting it on the head and reminding me to be lighter. Like gracie does, like only a child can, she keeps me here, here, here. As long as I stay open to that invitation. As long as I let them do that. For me, for both of us.

 

All the tears I’ve been saving up over the past month are coming out this week.

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