Obituary

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BRUNER-METHVEN, Stella Joy

 

 Stella Joy left this world on October 22, 2012 in exactly the same way as she entered it—completely surrounded by a circle of love created by the people who meant the most to her.

 

Stella will be forever missed and forever remembered by her parents, Aimee Bruner and Michelle Methven, as well as her brothers Samson (born October 2011) and Hugo (born August 2012).

 

Stella’s family feels so lucky to have had her for the last three years; she touched the hearts of her best friend and cousin, Gracie Bruner-Gonsalves as well as her Auntie Angie (Andrea Bruner), Auntie Juju (Julia Gonsalves), Auntie Heather (Heather Methven), Uncle Daniel (Daniel Pellett), cousin Xavier Methven-Pellett, Auntie Nicole (Nicole Young) and Uncle Tristan (Tristan Mohr).

 

Stella was blessed to have wonderful grandparents who spoiled her with love each day of her life; Poppa (Noel Methven), DeeDee (Margaret Mohr), Grand-Pa (John Bruner), Nanny (Sandra Young) and Tutu (Marilyn Emery).

 

Other special people in Stella’s life were Frank & Arlene Steger, Jen Caldwell & Brad Needham, Grace James, Natasha Watt, the wonderful staff at Childspace 3 / Metamorphosis Daycares, DPT’s of Fall 2007 and her #3191 donor siblings (Holden, Olivia and Rosie).  A special message of thanks to Stella’s care team including her palliative care doctors Dr. Kevin Bezanson and Dr. Parween Brar, who are not only superb Doctors, but also incredible human beings, our palliative “dream-team” of An Warnick and Em Hopkins and Stella’s nurse Chris Velem, who brought much appreciated humour and warmth to our home.

 

Stella will be missed terribly by all her special friends (and their parents), especially her best friends Arin Akintan-Carter and Flora HayDraude, as well as her other buddies: Tobin, Aurora, Cedar, Ava, Declan, Lark, Nate, William, Eamon, Alice, Evie, Ayokari, Sky, Violet, Winter, Hugh, Zev and Maya.  As these children grow up, it is our fondest wish that Stella’s spirit stays alive in their smiles.

 

Stella’s love, light, infectious laugh and huge heart will continue to guide and inspire all those whose lives she touched.  Her time on this Earth was short, but her impact was huge and we will be forever thankful to have been blessed with our redheaded “force to be reckoned with”.  She is forever woven into the lives of so many people, and we know she will continue to inspire us from afar.  To learn more about Stella and her journey, visit www.stellabrunermethven.com

 

In lieu of flowers, please consider making a donation to the Max and Beatrice Wolfe Children’s Centre (Choose Max and Beatrice Wolfe Children’s Centre from the dropdown box) or Camp Oochigeas for Children with Cancer.

 

A private funeral for family and friends will be held next week, followed by a public Celebration of Stella’s Life which will take place November 10th at 6:00pm outdoors in Riverdale Park West (just outside the gates of Riverdale Farm), rain or shine. You are invited to bring yourselves and your children, and come remember this special girl with us.  BYOT (Bring Your Own Timbits)!

 

The light of a distant star continues to reach the Earth long after the star itself is gone.


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Twinkle Twinkle Little Star

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Twinkle Twinkle Little Star

 

If you look into the sky tonight, you will see one extra star shining down on you.

 

Stella Joy Bruner-Methven died in her mommies arms today at 5:10pm.

 

She was peaceful, it was beautiful.  She was surrounded by her family and was loved from her first breath to her last.

We are broken but we know we will always hold her in our hearts, and can find her in the sky.

 

Love,

Mishi, Aimee, Sam, Hugo…and Stella

 

Twinkle twinkle little star, 
How I wonder what you are, 
Up above the world so high, 
Like a diamond in the sky, 
Star light, 
Star bright, 
The first star I see tonight, 
I wish I may, I wish I might, 
Have the wish I wish tonight, 

Twinkle twinkle little star, 
How I wonder what you are, 
I have so many wishes to make, 
But most of all is what I state, 
So just wonder, 
That I’ve been dreaming of, 
I wish that I can owe her enough, 
I wish I may, I wish I might, 
Have the dream I dream tonight.


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Stella’s Last Stand

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Note: for daily updates on Stella, remember to check the forum: 


Stella’s Last Stand 

Stella is still alive.  She is clinging to life just as she always has, not content to go gently and lightly into the next world.  Over a week ago the Doctors and Nurses told us we had anywhere from hours to “a couple of days” with our girl.  We were told that the longest they had every seen anyone go with no food or water was 11 days.  Aimee and I joked that just because they had said that, Stella would go longer.  And she seems up for the challenge.  Today is day 11 for Stella and though she is surely dying, her heart continues to beat strongly and her breathing remains slow and steady.   We have been told that every breath could be Stella’s last, but that no one really knows how much longer she will hang on.

 

Aimee and I consider this to be Stella’s last stand.  Stella’s last F-U to anyone daring to tell her what she should do and how.  She has everyone on edge, circling her, watching and waiting for her next move.  She is in total control and we have no choice but to sit and wait.  

 

So…what do you do when you’re waiting for your daughter to take her last breath?  If you’re us you do all kinds of things, from the mundane to the meaningful.

 

You open up the door everyday to find a wonderful meal that some neighbor, friend or family member has provided that nourishes both your body and your soul.

 

You go to the tacky salon around the corner that has a gold frame light up Jesus 3-D picture that is not tongue-in-cheek, and ask the ladies there to paint your toenails the most vibrant shade of green they have, in honour of your daughter.

 

You pick out the outfit you’d like your daughter to be cremated in and gently fold it in your cupboard until you need it.  You and your spouse ask each other, “should we do the Dora pants, or the leggings?  Green you are my sunshine shirt, or pink smile, dance, love shirt?”

 

You ask Rev. Sarah from your Church to come over and do a beautiful little blessing for Stella.  Your family is somewhat torn between what they believe, but… “just in case”…you want to make sure Stella is covered.

 

You send your sister to Value Village and have her bring back white sheets that you rip into strips and decorate to wrap around Stella as “hugs”, so she won’t be alone in her casket.

 

You read every single comment on your blog and forums.  Some make you laugh, some make you cry, all make you think about what a powerful presence your little girl has been.

 

You sit around the living room until late at night and watch the TV show “Impractical Jokers” on DVD, and howl with soul-cleansing laughter at the antics of four friends trying to out-embarrass one another.

 

You get six cupcakes from a local bakery, and on October 18th you celebrate Stella’s 3 ½ year birthday with a rousing rendition of “Happy Birthday” sung on the King Size bed where Stella sleeps.

 

You take turns 24/7 sitting with Stella as she lay sleeping in bed.  You read her stories, sing her favourite songs, stroke her hair and are joined by various people throughout the day, all of them lounging on your bed.

 

You gently dab your daughter’s eyes to get the crusties out, wipe her mouth and apply Vaseline to her lips.  You change her diaper, give her extra doses of morphine from the pump in her thigh and pray to whatever God is out there that she feels nothing.

 

You watch her chest rise and fall, holding your own breath as you stare at her ribcage wondering if it will move again.

 

You carefully paint her fingernails green and her toenails purple so that she looks her best.

 

You ask your self and each other, “how can this be happening?” but there is no answer, so only silence follows.

 

You look out the window once in awhile but are afraid to leave the house.  The sun shines, it rains, frost appears on the window of your car, a rainbow stretches over the city, the moon comes out. But you never really know what day it is, or what time it is because you live 90% of the time in a dark bedroom lit only by two flickering candles in the corner.

 

You answer a dozen text messages everyday from your friends asking, “How is she?  How are you?”

 

You carefully and gently drag the baby bath into your bed and wash your daughter’s hair so the curls spring to life…just so you can carefully select some to cut off  and place them in a dusty old box by the bed.

 

You celebrate Stella’s brother Sam’s first birthday by inviting your whole family over for pasta and then letting him sit on the bed next where his sister lay dying , and blow out his birthday candles.

 

You bite the inside of your lip to keep from crying when you see how cancer has destroyed your child’s body, turning her into a pale, sunken eyed, translucent waif who is so thin you can see her heart beating steadily in her chest with you naked eye.

 

You forget to shower, forget to eat, forget to check your phone for messages.

 

You cuddle with Gracie in the bed next to Stella and watch Disney movies on the laptop, while Gracie continues to “play” with her sleeping cousin, inventing what she thinks Stella would do or say, decorating her still body with toys, bringing her gifts like rocks and flowers that she proudly displays on the pillow next to where Stella lays.

 

You whisper “I love you” in Stella’s ear 100 times a day.

 

You allow your heart to break over and over again, and just sit with the pain because there is nothing else you can do.

 

You laugh, cry, remember .

 

You live

 

as she dies.

 

 

 

Aimee and I wash Stella’s hair

Poppa and our boys:

Poppa and Auntie Heather snuggle Stella:

Naptime for Hugo and Stella:

Happy Birthday Sam!


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Almost Ready to Fly…

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Almost Ready to Fly

Note: for daily updates on Stella, remember to check the forum: 

 

You never know for sure, but all current signs are pointing to the fact that Stella is getting ready to fly to another place, far away from this one.

The last three days she has slipped into a deep sleep that we cannot rouse her from.  She hasn’t had a drop of food or drink in two days.  She doesn’t respond to our voices or touch, and her eyes are covered in a yellowish film.  She has been struggling off and on with fevers, but is resting so comfortably right now.  Her little body is so tiny and weak and small, but her spirit continues to fill the room from floor to ceiling and the love that is surrounding her is truly beautiful in its purity.

The Doctor, who has freely admitted to being wrong before, has indicated that she feels Stella is a couple of days away from dying.  Yesterday, when things were looking especially grim, Aimee and I spent the entire day lying with her in the bed, talking to her, reading to her.  We were joined at various points throughout the day by our family members, all piling into the King size bed.  The cutest part was when Gracie came to spend time with her special cousin.  Although Stella was completely unresponsive, Gracie played with her and invented her own responses to what she was saying.  They watched Cinderella in bed together on the laptop, and Gracie brought her little presents and kissed her goodnight.

As we enter these next few days, please also keep our neighbour and his family in your thoughts.  The 17-year old neighbour who I wrote about a couple of weeks ago died last night.  We are overwhelmed with grief for those who love him, but somehow feel that he and Stella had a special plan to bring their parents together so that we can help hold each other up as we each navigate our own journeys of grief.

I will let you all know when Stella finally flies…here’s to hoping it’s as beautiful as her life has been.

FLY (Celine Dion— I know she’s a bit over the top, but this song is beautiful…)

Fly, fly little wing
Fly beyond imagining
The softest cloud, the whitest dove
Upon the wind of heaven’s love
Past the planets and the stars
Leave this lonely world of ours
Escape the sorrow and the pain
And fly again

Fly, fly precious one
Your endless journey has begun
Take your gentle happiness
Far too beautiful for this
Cross over to the other shore
There is peace forevermore
But hold this mem’ry bittersweet
Until we meet

Fly, fly do not fear
Don’t waste a breath, don’t shed a tear
Your heart is pure, your soul is free
Be on your way, don’t wait for me
Above the universe you’ll climb
On beyond the hands of time
The moon will rise, the sun will set
But I won’t forget

Fly, fly little wing
Fly where only angels sing
Fly away, the time is right
Go now, find the light

 

Even in times of extreme sadness, our children bring us smiles.  This is Sam playing with Hugo yesterday.  He kept putting the tiara on Hugo and laughing his head off!

 

The last day Stella was awake, she did some drawing with Aimee on the couch:

Spending time with Gracie reading in the bed:

Cuddling with Auntie Heather and DeeDee:

Watching movies in bed with Uncle Tristan and Gracie and Mama:

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A Cage of Metal and Tears

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A Cage of Metal and Tears

 

Stella is nearing the 16-month mark of being diagnosed with DIPG.  She continues to decline physically, but also continues to live, sticking her tongue out everyday to let us know what it is she’s up for.  We’ve been to Riverdale Farm, out for dinner, out for ice cream, to the Farmer’s Market and to Kimbourne Drop-In Centre this month.  If Stella sticks her tongue out, we go.  If she asks for it, she gets it. We sense that we have been given a second chance with Stella since her “near death” in late August, and we are running with it.

 

We have seen changes in the last few weeks with our girl.  Stella is physically a rag doll now.  She is the physical nightmare I imagined months ago when I realized what this tumor was capable of.  She has no independent control of her body left whatsoever…essentially she is a quadripalegic. Some days she can’t even open her mouth to eat.  Her left eye now rolls to the side.  She can’t hold any part of her body up or move anything at all.  It’s hard to help her do and see things.  When we go to the farm, one person has to hold her body up and the other has to hold her head up and try to move it in a way that her eyes (which naturally look down and left), can see the animals.  When she paints, I have to drape her limp body over my lap and then hold her head up with one hand and use the other one to do hand-over-hand with the paintbrush.  It’s physically exhausting, but worth every second of the struggle.  It is almost impossible for her to smile anymore—the effort is too much, but her eyes tell us how she is feeling.  We don’t know how much longer we will be able to have her physically with us, but we’ve decided to plan for the longer term and take each day as it goes.

 

A couple of weeks ago, as part of our longer-term plan, Aimee and I began mulling over the idea of getting a wheelchair for Stella to help her sit more upright.  Our rationale was that with the proper support and ability to sit, she might be able to participate more in activities like dinner at the table, or playing at Kimbourne.  So, last week, we had a salesman come a couple of options for us to test out with Stella.  I think the salespeople try to make the idea of a wheelchair seem less frightening by referring to it as a “special needs stroller”, but when you see her in it, a bunch of padded bars holding up her head and a bib under her chest, it becomes apparent that this is a wheelchair in every sense of the word.

 

I was caught completely off-guard by the way I felt when I first saw her sitting there.  The shock was almost too much for me, and though I feigned excitement and happiness at seeing Stella sitting upright again after nearly a year of having to lay down, inside my heart was breaking into a million sharp little pieces, scarring the inside of my chest.  She looks so…so…so sick in her wheelchair.  So frail.  So helpless.  I hate it.  I hate the metal cage with wheels on it that holds her body in an unnatural position, trapping her in a web of buckles and straps,  a veritable scarlet letter that screams “different” with a capital “D” at the top of its lungs.

 

The truth is, we can’t afford the “Special Needs Stroller”.  It’s $10,000 and although the Ontario Government will give up to 75% to families towards the cost of a wheelchair, Stella doesn’t qualify for the grant from the Government because she is palliative.  That’s right.  If you’re dying, the Government won’t pay for your wheelchair.  Why should they?  The person using it is just going to die anyway, what a waste of money, right?  Hearing that news from the salesman was a slap in the face, but I was also secretly relieved. I don’t want to see her in a wheelchair.  It’s too hard for me.  I will do anything for Stella, even torture myself further by putting her in that damn chair, but if I don’t have to, I’m thankful.

 

Over the last few months, I’ve often gotten frustrated with people who make comments about Stella out in public.  The whispers I’ve heard about how she’s asleep, when she’s not. The questions about, “what’s wrong with her?” The comments and tongue clicking that occurs when people mutter that she’s too big to be in a stroller, and too old to be drinking from a bottle.  For the most part, I try not to let it bother me.  These people are strangers, they mean nothing to me, and I owe them no explanation (although once in a while when I’m feeling particularly irritated I look them in the eye and say with calmness, “actually she has a brain tumor”, in the hopes of making them feel badly about their judgments).  So, before we got it, I was partially excited about the wheelchair because I felt like it would draw a clear picture for people of the fact that Stella is not tired, or lazy, or spoiled, but that she is sick and needs a little extra help.

 

The salesman who came agreed to let Aimee and I trial a wheelchair for a week so we could decide if we liked it or not—though we have no intention of actually buying it.  Aimee understands that I am having trouble with the wheelchair, but she reminded me that if it was the best thing for Stella, we need to give her the opportunity to use it.  So, we agreed to try it out and I loaded it into the back of our minivan chattering excitedly to Stella about her special new chair.

 

I was so upset the first time I took her out in public with it.  We went to a big Fall Festival in a local park where there was face painting, horseback riding, food, music, etc.  I gathered all my courage, placed her into the wheelchair, did up all the straps and tightened the headrest, then began to push Stella around the park, amidst huge groups of children running around, adults standing in groups talking and laughing, and the swirl of autumn leaves raining down on us.

 

Already feeling conspicuous, I soon learned that far from being something that cut down on looks, stares and whispers, the wheelchair invited even more of them.  I felt every eye on me when I pushed her around.  I lost count of the amount of pitying looks I got from other parents as I tried to manouever Stella’s wheelchair around.  I can stand a lot, but not pity.  People who feel sorry for me underestimate how much joy and purpose Stella brings to our lives.

Not quite sure what to do, I decided to take Stella to the craft counter where we could paint pumpkins together.  It was packed with kids and parents painting pumpkins, and I was surprised to notice that other than a whole slew of stares, no one paid any attention to us at all.  As in— no one moved aside to let us near the crafts, or offered to help gather supplies for us.  We were effectively shut out of the craft table.  I ended up having to push Stella away from the main craft table and brought some art supplies over to her.  But she didn’t get to sit at the table with the other kids, and she didn’t get to pick from all the paint colours like the other kids, and she didn’t get the people running the table complimenting her on her pumpkin and offering suggestions and assistance.  Luckily she didn’t notice, but I sure did.  Similarly, over at the face painting table a group of volunteers was busy giving children faces full of beautifully coloured butterflies with sparkles that spread from their cheeks to foreheads, to chins.  I stood in line with Stella but when it was our turn, the volunteer took one look at Stella in her chair and said to me, “I’ll just put a tiny butterfly on her cheek for you” and took a plain green paint stick and did a tiny outline of a butterfly on one cheek.  I felt embarrassed.  I should have gotten angry and stood up for Stella, demanding she get a big, sparkly butterfly like the other kids, but I felt like I’d been punched in the gut and slinked away. I pushed Stella over to the pony rides and we watched the other kids ride ponies.  Then we wandered over to the bouncy castle.  I asked the people at the castle if I could bring Stella in if I held her and just sat in a corner and let the other kids bounce us around.  They said no, it was too dangerous.

 

It was then that I came to the heartbreaking realization that my daughter and her wheelchair were being treated like a disabled person— and disabled people in this community were treated as lesser human beings.

 

How sad and sickening.

 

The more I stared at Stella sitting there in her wheelchair, the more I couldn’t hold back the tears.  As she sat watching the Bluegrass Band, I began to cry.  My dad rubbed my back and I just turned to him with tears running down my cheeks and said simply, “I’m sad”.  He nodded.  He knew.  He understood.  He told me to go for a little walk to regroup, so I did but I didn’t feel any better when I got back.

 

I have tried my hardest to live every part of this journey with as much strength and dignity as I possibly can, but that wheelchair very nearly broke me. The stark contrast of the girl Stella once was to the one she now is, is too much to have staring at me in the face so blatantly day after day.  When Stella is laying in my arms on the couch, or sleeping in her stroller, I can still see my daughter and can find a way to keep going, to keep smiling, to keep helping her live the best life ever day after day.  But for some reason, that wheelchair cuts too deep.  I’ve asked Stella if she likes her new stroller, and she sticks her tongue out yes, but I don’t think it’s made our life any better or more bearable.  In fact, I can’t wait for it to go away. At least Aimee and I agree that she doesn’t look overly comfortable in it.  Maybe sitting upright increases the pressure in her head due to the hydrocephelus. Maybe it puts too much pressure on her tailbone.  Maybe it makes it harder to see us because she faces away.  Or maybe we just can’t tell if it is good for her or not because she has been so tired the last few days.  Personally, I think that the girl who once would never sit still for a moment, hates the restraints that criss cross her body because she knows they act as a barrier to her bursting free.

 

I think wheelchairs are wonderful for many people.  I know that they offer independence and mobility and empowerment.  A few months ago, it probably would have been amazing for her.  But not now.  Not at this point.

 

As we near the end of our journey with Stella, I have decided that she doesn’t belong in a cage of metal and restraints that brings sadness and pain to me, and whispers and separation to her. Stella belongs in a place I can kiss her and whisper “I love you” whenever I want.  Stella deserves to be free.  Instead of a canvas seat strung on two metal bars, I want her to sit on a cushion made of my warm legs. Instead of buckles and belts, I want her to be held in place by my strong arms.  Instead of a seat that forces her to face away from me, I want her to see me looking at her with love and pride.  Instead of a contraption that keeps her further away with its focus on cold, grey distance, I want her close by and surrounded with nothing but love and warmth. From now until forever I want to be her chair. Holding her close, supporting her in everything she needs, and keeping her safe.

 

Stella and her new wheels:


 

Painting at Kimbourne:

Riverdale Farm:

Ice cream trip:


Fall Vision:


 

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