The Long and Winding Road

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The Long and Winding Road

Lyrics: The Hollies

The road is long
With many a winding turn
That leads us to who knows where
Who knows when
But I’m strong
Strong enough to carry him
He ain’t heavy, he’s my brother

So on we go
His welfare is of my concern
No burden is he to bear
We’ll get there
For I know
He would not encumber me
He ain’t heavy, he’s my brother

If I’m laden at all
I’m laden with sadness
That everyone’s heart
Isn’t filled with the gladness
Of love for one another

It’s a long, long road
From which there is no return
While we’re on the way to there
Why not share
And the load
Doesn’t weigh me down at all
He ain’t heavy, he’s my brother

He’s my brother
He ain’t heavy, he’s my brother…

 

I’m scared.

 

There has been a change in Stella over the last two weeks, and it’s making my heart squeeze.  Aimee and I continue to get up each day and greet our kids with enthusiastic smiles and energy, but it is forced.  We are living with 100lb weights on our souls.

 

Stella is tired.  Her body is tired, I can see it with my eyes.  Eyes that have carefully watched this child grow, flourish, and now fade.  Eyes that have been looking, waiting, watching for the changes– no matter how subtle–her entire life.  I remember watching for her first tooth, for signs she would start crawling, for her first word, her the first time she said “up” and wanted a hug.  But I never thought I would be looking for signs of her body shutting down when she was still just an adorable little girl that should have her whole life ahead of her.

 

Of course, we don’t really know 100% if Stella is just resting for a couple of weeks and then will bounce back for some more adventures, but I feel an uneasiness about it all.  Every time a month or season changes, I become more aware of where we are and as spring fades into summer and the flowers start to bloom and the sun beats down on our bare arms, I sense that Stella is not present a lot of the time.  Her body is here, but she doesn’t have the energy to share her spirited personality with us much anymore.  A couple of smiles a day and then her head falls back in exhaustion.  A couple of bites of food and then her mouth slams shut and she refuses to eat anymore.  A couple of attempts to focus, but then a fogginess overcomes her beautiful blue eyes, the left one which is now permanently droopy.

 

As Stella’s cancer has progressed, more and more often I get people telling me that they don’t or can’t come onto this blog because, “it’s too sad”.  At first when people said this to me it made me so angry…I felt like saying, “It’s too sad for YOU!!!!?  This is my LIFE, and believe me it’s too sad for me too.  Unfortunately, I don’t get a choice”.  But now I’ve realized that I’m not really mad when people say that to me, I’m actually jealous.  I wish I could just not have to think about it, could just choose not to come on here, could forget about what’s happening for just a little while.  It takes a certain amount of bravery to come to this blog— to care about Stella, even knowing that she is only here for a short time.  To tell your children about her and show her pictures.  To keep showing up and calling and being our friends, even though we often can’t reciprocate very much, and flake out all the time.  To let the tears fall down your cheeks for a little girl who should have gotten to live.  Who should be running around the living room right this second, loudly torturing her little brother and demanding to go to the park after dinner.  But instead, she sits on the couch in heap of blankets and red hair with her eyes closed to the world, using every bit of energy she has to just stick her tongue out for “yes” when I ask if she is thirsty.

 

I am so grateful for the parents of other children who have died that have reached out to us, shared their stories and their children.  It gives me comfort to know that others have walked this path of burning stones that sear your soul from head to toe, and have survived.  I know that Aimee and I and our friends and family will get through this immense heartache and slowly learn to laugh again.  We have no choice.  But I also know this part of the long, winding road we about to travel is fraught with tears and will take a lifetime to truly understand.

 

For now, our focus has shifted.  We are no longer trying to decide whether to take Stella swimming or to the farm, whether to bake chocolate or vanilla cupcakes.  Our sole purpose now is to make sure Stella is pain-free, surrounded by our love and getting whatever she wants that gives her comfort.  The focus now is on making sure she gets a few bites of food when she feels like it, a few sips of liquid, and a whole lotta kisses.

 

Aimee and I have spent three days straight on the couch in a tangle of arms, legs, curls and dreams.  No one is complaining, we are just breathing in deeply the sights and smells of our daughter, taking pictures with our eyes and hearts of the freckle on her left hand, the long strawberry-blonde curls that frame her face, the nails painted bright purple, the cupids bow mouth turned up slightly at the sides, the soft rise and fall of her chest as she sleeps, her tiny hand resting lightly on my pregnant belly, her long eyelashes kissing the tops of her cheeks.

 

How long do we have left? No one knows…no one has really known all along…but there is a certain knowledge we all have that her time here on earth will now be measured in weeks, not months.  That she will not ever bounce back to the girl who a month ago was horseback riding and painting with her mouth.  Maybe it’s four weeks…maybe eight…maybe more…maybe less.

 

Aimee and I are not okay, but we have both acknowledged that we are okay with not being okay.  How could we be anything but hurting right now?  All of us are aching silently in our own ways… our families, friends, anyone who has been moved by Stella’s story.  Together, we survive on love alone for now.  Love is the only reality that wipes out all sense of time, overcoming all memory of a beginning, and all fear of an end.

 

We love you, Stella and whatever is coming, whenever it is coming, we will love you forever.

Stella and Sam play on the front lawn this afternoon:

Our Kids

Gracie and Stella sit under the tree together:

Our girl on her throne!

 

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Map

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Map

 

This journey with Stella has been so much longer and more complicated than Aimee and I could ever have imagined almost a year ago.  I remember a few days after she was diagnosed, I finally got up the courage to look up “DIPG” on the computer.  I was horrified at what I found, reading the descriptions of the way that the tumour would take away my child’s motor skills one by one but leave her cognition, brain and knowledge of what was happening to her completely untouched.  I wanted to throw up.  I turned off the computer and began walking.  I had no destination, no idea where I was going, I just wanted to escape this horrific reality that Aimee and I were being faced with.  I called Aimee’s sister Andrea and told her that I didn’t think I could do this— didn’t think I could watch my child die in this horrific way.  I was walking towards the Bloor Bridge.  I didn’t want to jump— I just wanted to imagine that I was going to…imagine that I had a way to make the pain in my heart stop because it hurt too much to live.  I think I freaked Andrea up thought, because soon, our friends An and Em picked me up and brought me back home.  They sat with me on the swing in my Dad’s backyard and I told them that I wasn’t strong enough to spend the next 9 months watching my child slowly die.  (9 months is what they say the average child with DIPG will live for— if they receive treatment).  I remember An (a nurse and thanatology specialist), assuring me that Stella would not live that long.  Without treatment, it would be 3 or 4 months maximum.  6 would be a mini-miracle.  I remember feeling relief that it would all be over soon— before Christmas for sure.  I kept clinging to the pattern that the Doctors had told us she would follow.  It was difficult, but it would be mercifully fast and she wouldn’t even really understand what was happening to her because she was only 26 months old.  I would be back at work in January and by Stella’s birthday, maybe it wouldn’t hurt to open my eyes in the morning anymore.

 

Now here we are, 11 months later and Stella, without treatment, is still here.  She has shocked not only us, but the Doctors and other professionals as well.  They have no answers as to why she is still alive, why the tumour has been growing so slowly, how much longer she has.  She has seen so many things she was never supposed to see: Sam being born, Hallowe’en, Christmas, Easter, her third birthday.  And while we are grateful to have had so many months with her -months which she has taught us so much, and graced us with her love and laughter, I also feel completely lost.

 

When someone doesn’t follow the prescribed route, when you have no idea what direction you’re headed, how you will arrive there, how long it will take and what the conditions will be like… it’s absolutely terrifying.

 

There is a reason that we have called Stella’s cancer “A Journey” instead of a trip or some other term.  A journey is generally one long and connected piece of travel, especially pertaining to a destination that takes a long time to get to.  A journey insinuates that there is no prescribed route, no direct way, no map.  Sometimes a journey doesn’t even have a definite destination.

 

But I feel disoriented without a map.  At my core, I am a student.  I’ve always loved being given a problem, or analytical issue, or literary question and I research it to death until I’ve formulated an opinion about it, and I feel like I “know” the answer.  But with Stella, no one knows any of the answers to my questions.  Not even some of the leading DIPG experts in the world.  And while at times, this has been a very good thing—because we have gotten some unexpected beauty, stunning perspective and surprise moments because of it—as the journey wears on, I find myself getting more and more frustrated, feeling more and more lost and searching vainly for a map to give me some idea of where we are headed with this horrible disease.

 

Last weekend Stella was running a fever and slept for almost three days straight with very little interaction or signs that she was aware of what was going on around her.  Funnily enough, I wasn’t scared by this or worried or frightened.  It was familiar to me— we’ve been here before, probably half a dozen times.  The first several times, Aimee and I completely panicked and spent the days and nights crying thinking this was “it”, but this time we just waited patiently for her to come out of it.  The only sign I give that I may thinking the worst is that I become obsessed with going online and looking at other blogs that have been kept by DIPG parents.  I find myself reading and re-reading the blogs of beautiful children that were taken by this horrible disease, and try to find what “the sign” was that led the parents to finally understand death was at hand.  Joseph…Emma…Elena…Oliver…Rex…Max…Johnny…countless others. I read them all, and yet I haven’t found any signs that were common to all of the children who died of DIPG.  Everyone died after a different amount of time (2 months to 2 years), the tumour did different things to their body, their deaths were completely different.  Some children were alert  24 hours earlier shopping and swimming, some fell into a coma and hung on for days afterwards, some passed away peacefully, others suffered difficulty breathing and swallowing and their death was merciful for those that couldn’t watch them suffer any longer.

 

I try sometimes to make sense of where we’re headed, but it is hard to find sense in something that feels so utterly senseless.

 

I know that this journey will eventually end in the death of my beloved daughter.

I know this journey will end in my heart breaking and bleeding.

I know this journey will end with tears, screams and pain.

 

I want so desperately to get off this path that I’m on, but I have nowhere else to go.  The map I am so desperately searching for doesn’t exist and so Aimee and I flounder in the dark, coming across what seems like insurmountable obstacles, trying our best to navigate unknown elements and emotions, all the while knowing we are headed towards despair and agony.  It’s so hard.  And in the meantime, our incredible son Sam is getting older and we are needing to learn how to parent him as a 7-month old.  We watch him do things that Stella can’t do anymore— reach for what he wants, put something in his mouth, sit up unassisted, smile and laugh on cue, hug us, eat solid food.  We are on diverging paths.  One is headed to a future without Stella, a future with two sons instead.  The other is headed towards Stella’s decline and death.  We are now 9 weeks away from having our third child.  7 months ago there was no way we thought Stella would still be alive at this point.  And we still don’t really know if she will get to meet her next brother or not.  It is all a big unknown to us, hard to plan for anything, hard to predict anything, hard to picture what next week let alone what next month will look like.

 

Where is that damn map!??

 

i find myself looking for familiar things—touchstones to help me gain my footing in the absence of a map.  The 7-day a week morning breakfast routine with my family.  The medication alarm that goes off at 8am, 8pm, 12am and 3am.  Therapy on Tuesday’s.  Sleepover with Gracie on Saturday’s.  As the weeks pass, I cling to each of these things as though they were the buoy’s that will keep me from drowning.  The days are so unpredictable otherwise.  Will Stella have a good or bad day?  Will Stella be sick today?  Will Stella want to leave the house today?  Will Stella eat today?  Will Stella have a seizure or fever today?  Will Stella die today?

 

I think often of sitting on that swing with An 11 months ago, and telling her there was no way I could survive watching Stella waste away.  But we have.  Aimee and I and our friends and family have watched her lose her ability to walk first, then stand, then sit, then hold her head up.  We watched her lose her ability to use her arms, to feed herself, to eat solid food.  We watched her eyesight worsen, her headaches worsen, her ability to speak and communicate with us disappear.  We watch her drool and struggle to swallow.  We watch her sit quietly, her head drooping, her hands hanging uselessly like little claws at her side, her voice silenced, as other children her age run and shout circles around her.  And yet-unexpectedly- we also watch her laugh and smile and welcome new adventures.  We watch her live as much as we watch her die.  It’s both maddening and miraculous.

 

Without this illusive map to guide us on our journey, Aimee and I have no choice but to walk blindly through each day with the help of our family and friends and supporters.

 

And, once in awhile, we manage to find our way.

 

Last night we had Stella’s friend Arin and his family over to celebrate Victoria Day with us.  Stella was quiet for most of the evening, she has been more tired and lethargic recently, not wanting to leave the safety of the house and the couch at all.  But just as the sun was starting to fade, we lit some fireworks for Arin and Stella.  As they rained down multi-coloured sparks around our backyard, Stella and Arin sat side by side and laughed.  The louder, bigger, flashier the fireworks, the more Stella smiled.  At one point something called “The Big Bang” was lit by Daniel and it was exactly what it sounds like…a firework that lets off a massive “bang!” and one single shot of fire shoots up into the air.  It caught us all by surprise.  The adults gasped and jumped, the babies burst into tears, Arin backed away scared.  And Stella?  She laughed and laughed and laughed in delight at the noise and shock of it all.  This is when I don’t feel lost anymore.  When Stella reminds us that locked inside a body that has failed her in every way possible, her spirit is still there, as fearless and strong as ever.

 

The name Stella means “Star”.  Stars add light to the darkness, and you can follow them when you have nowhere else to go.  But I still wish I had a map.  Or at least a compass to point me in some kind of direction.  But all I have is my special star, so when I feel lost on this road to Hell, when it is dark and I am scared I can’t find my way, I need to remember to look to my star for help.  She is the only thing we have to follow right now.

 

I love the light for it shows me the way, yet I endure the darkness because it shows me the stars.  -Og Mandino

Aimee and her daughter:


Gracie pulling Stella around the backyard:

Stella and Sam in the backyard:

Stella and Daniel enjoying fireworks:

Victoria Day BBQ!

Stella watching the fireworks in our backyard:


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Mother’s Day

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Mother’s Day

This weekend is Mother’s Day.

Oh, Mother’s Day!  The words conjure up pictures of loving women, surrounded by children and adoring family members, receiving gifts and flowers and sentimental cards with poems in them, celebrating the sacrifices and joys of motherhood.

This Sunday scenes like this will take place all over the country.  It will be a beautiful and wonderful day for so many people to say, “Thank you Mom” for doing such a great job.  Mother’s will be filled with pride and hug their children, enjoying the one day a year when people unabashedly proclaim love and gratitude for all they do.

Like all the holiday’s we have celebrated (or not celebrated) since Stella’s diagnosis, it all feels so different this year.

Gone are the fantasies of a little red-headed girl of 7 or 8 destroying the kitchen and then bringing us a messy tray of burnt toast and soggy cheerios as Aimee and I giggle in bed, listening to the chaos of the kitchen.  Gone is the feeling of superiority I used to feel as the mother’s at Church got a free flower upon filing into their pews.  Gone is the expectation of brunch, flowers, gifts given simply because I expect to get them on a random day assigned by Hallmark.  Gone is the flush of pride you get when a cashier, neighbor or other innocuous person wishes you a Happy Mother’s Day and looks down at your little one(s) with a smile.  This time, it all feels so tainted.

This is Aimee and my fourth year as “mothers” celebrating Mother’s Day.  But this year, in place of a proud glow, I have only questions and frustration.  Why do some children get taken away from their parents through drugs, violence, disease, miscarriage/stillbirth?  Why do some deserving people never get to experience parenthood at all, no matter how much they wish it, no matter how much they deserve it?  Why do some children and adults have to live without their mothers? What is a mother anyway?  Just because you give birth or give a home to someone, doesn’t make you a mother does it?  Surely there has to be more to it than that.

As with every other facet of my life, Stella’s illness has forced me to look at my life and redefine my belief system.  My (new) personal opinion, is that motherhood is so much more than simply carrying, birthing or raising a child.  It’s a state of mind— a feeling of immense responsibility peppered with a healthy dose of uncertainty and guilt.  From the moment we know life is inside of us, or that life is on its way to us in another way, there is an immediate feeling of needing to protect, love, teach and honour the child(ren) “given” to us.  But, for many of us, it is impossible to keep the promises so easily made at the beginning to ensure a child is kept healthy and safe.  We are never told how ignorant we are to think these things— how bold and silly to believe that we truly have power over the Universe and can do much to stop bad things from happening to those we love most in the world.

One thing I know for certain that being a mother is not dependent on the immediate presence of a child.  If you’ve loved as a mother once, you are forever a Mom.

Even if you have other children, children whom you love and adore and would die for, even then there must be room to mourn for deceased children.  The heartbreak of losing a child is so much more acute on a day where motherhood is celebrated.  My child is alive this year, but I am still haunted by the knowledge that I couldn’t protect her from this monstrous disease.  I can’t save my child.  Does that mean I’m a failure as a mother?  Cognitively, I know I’m not, but it’s hard not to listen to the nagging voice inside you that taunts you by reminding you that you failed at your job of ensuring your child grew up to be a happy, healthy, independent adult.  As a parent you’re supposed to protect your baby, and Aimee and I couldn’t protect her from a cruel disease that is slowly and methodically destroying her.  It hurts to feel this way.  It hurts to look at her and know we need to let her go, need to let go of all our hopes, beliefs and dreams.  We are mothers, but we are mothers who are hurting.  And it saddens me to know that there are so many others there that also live a similar type of pain.

We are lucky because, this year, all our children are still with us.  Stella, Sam and little Flick are creating a nest of love for us, for this one last year.  But I am also acutely aware of that group of “other moms” this year.  Moms who may be smiling on the outside, but who are wrestling on the inside with the rage that comes from losing a child, or never having one to begin with.  I don’t wish that people feel guilty for their healthy children, for their day in which to bask in the glory of motherhood.  But I do wish that ,if you know someone who lost a child, at any age, you take a moment to acknowledge and remember them.  These children lived and were loved and are still alive in the thoughts and hearts of the Moms who held them, even for just a moment in time.

I personally know that there will be many mothers who, instead of eating bacon and eggs this weekend, will be participating in Meagan’s Walk through Sick Kids Hospital instead.  Mothers who should be at home hugging their children, but instead are walking through the streets of Toronto to raise awareness and funds for brain tumors that have invaded their lives and their ideals of motherhood.  Mothers whose arms are empty where their children used to be.  I posted more about it on the forum, but if you haven’t had time to look yet, please hit this link to learn more about three families that I know are walking in support of their children’s illnesses— Evie’s Team, Emma and Blankie and Wrestle for Johnny:

This brings me back to the issue of trying to redefine for myself what a Mother is.  The only words I can come up with are so simple it feels almost ridiculous.  But, simplicity is something I find myself craving and… well, this definition just makes sense to me.

The way I see it, a Mother is simply the one person who loves their child(ren) unconditionally, completely, and forever. No matter what.

Happy Mother’s Day to ALL the Moms out there, however you define yourselves.

Biology is the least of what makes someone a mother.  ~Oprah Winfrey

 

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Butterfly

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Butterfly

 

First of all, Aimee and I would like to thank everyone for their heartfelt wishes and for sharing our excitement and joy about the upcoming birth of our third child in a few months.  There were, as expected, some people who posted negative and/or derogatory comments that were meant to be hurtful, but luckily we have the best web team in town (we heart Jeremy and Karen), who immediately removed any negative comments in order to preserve this website as a place of friendship and positivity.

 

One of the interesting things for me with this pregnancy has been to experience the miracle of a baby growing inside me— getting bigger, and kicking and rolling to let me know how alive he is inside—at the exact same time that I watch the other baby who grew in my tummy struggle to do even the most basic things.  We never dreamed when we inseminated in the fall that Stella would still be alive 6 months later, and never imagined trying to cope with the realities of life and death each and every day.  But here we are balancing Stella’s morphine, zofran, atropine and phenobarb, Sam’s foray into solid foods, Aimee’s breastfeeding tea, and my anti-depressant and prenatal pills.  A mixture of life and death all living together in harmony with no concept of where either of them are at any given time.

 

Funny thing about death— I never thought about it much before, but now I think it, feel it, talk about it every single day.  Before this horrible cancer hit my family, death was something that happened to old and sick people.  My grand-parents have all died in the last 16 years of my life, but they ranged in ages 74-94 so…well, I always felt like they were supposed to die because they were old.  And I would read about other peoples children dying and I would feel sad for a minute or two but, you know how it is, you turn the page of the newspaper and get caught up in the newest Brangelina news, and it goes right out of your head.  How I long for those days of ignorant distractions.

 

But now death is on my radar permanently.  It’s in my head and my heart and my line of vision.

 

I still sometimes look at my beautiful daughter, he lips perfect and pink, her hair flowing around her head, her porcelain skin almost luminescent, her smile as bright as the noon sun… and I shake my head that she is dying.  How can I possibly prepare to say goodbye forever to this girl who owns a huge piece of my heart?  And I often wonder when people come to visit us, when they see her sitting on my lap and she’s all warm and so very ALIVE…I wonder if they leave and think about how one day soon she will be gone from us forever.  Gone from our lives, never to be seen, heard, touched ever again.  Ever.  These thoughts haunt my nights.

 

In 20 days it will be 11 months since Stella was diagnosed with a DIPG tumour.  In so many ways, we can’t believe it’s been that long, but in many ways it also feels like we’ve lived 25 lifetimes since then.

 

Aimee and I have spent the last several weeks trying to organize all the videos we have of Stella.  It’s completely bizarre to literally watch with your very own eyes the disintegration of your child from active, talkative, bright-eyed toddler to someone who sits on the couch for hours at a time, eyes unseeing, head unable to look up, voice silenced by cancer.  On the good days we can watch the videos and laugh at our daughter’s antics.  On the bad days we sit and cry, stunned into silence by how much Stella has endured these last months and how much our friends and family have suffered as we all try to continue smiling, even though we are all witness to something horrible happening to our beloved Stella.  She may not be suffering, which is our only hope, but those of us who love her sure are.

 

All these jumbled thoughts came to a head a few days ago when Aimee, Sam, Stella, Auntie Angie, Auntie Juju, Gracie and I went to the butterfly conservatory in Niagara Falls.  It was a great trip, and despite Stella being exhausted for much of it, she smiled lots and we know she had a great time.

 

At the butterfly conservatory, I thought about the well-known cultural myths associated with butterflies as a symbol of transformation.  The metamorphosis of a butterfly really is miraculous when you fully comprehend the massive amount of transition that it undergoes from egg to caterpillar to cocoon until it finally unfurls into a fluttering, glorious flash of colour and energy.  It made me think about how our lives—all of us— have changed in much the same way.  Life has changed to such an extreme that Stella, Aimee and I are completely unrecognizable.  The life of a caterpillar wrapped in its cocoon versus a butterfly.

 

In Niagara Falls, one special butterfly came to Stella and seemed to want to stay with her forever.  It occurred to me that this insect nuzzling Stella’s cheek illustrated perfectly the deepest symbolic lesson of the butterfly.  A butterfly has to learn to recognize the changes in its life and body casually and unquestioningly, just as Stella has done.  A butterfly must have an unwavering acceptance of its journey, although it may at times be scary and dip into the great realm of the unknown.  The butterfly surrenders itself to metamorphosis, it believes wholeheartedly that the transitions and changes in its life will all lead to the right place, and fighting against changes is useless.  The butterfly reminds us that we ALL need to have faith in the journey, just as Stella seems to.

 

Since being at the Butterfly Conservatory, I’ve started to see butterflies everywhere we go.  They seem to come out of nowhere and flit around our heads, then disappear into the sky or the bushes nearby.    Each time I see one, I remind myself that we are all in the middle of a great metamorphosis, and our greatest responsibility is to accept the changes that come our way and have faith that, in the end, we will emerge into the people we have the potential to be.  But until then, the journey is our only guarantee.

A special butterfly for a special girl:


Stella delighted at the butterfly that landed on her stroller (left side):


Gracie and Stella, cousins and besties!


Great Wolf Lodge!


Great Wolf Lodge Waterpark:


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Living Life Online

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Living Life Online

 

Recently another DIPG child, whose blog I had followed on and off, died.  Her name is Miette and she lived in Australia with her family.  While searching for something on her, I stumbled upon a You Tube video called “Miette Leaves Home”.  Thinking it was a video of Miette going away on a trip or something, I clicked on it to watch it.  A few seconds in, I realized it was a video of Miette’s father carrying his dead daughter’s body out of their home and handing her over to the funeral directors.  I wept openly watching the video, overcome by the emotions and memories of when Aimee and I and our families had to do something similar with our beloved girl.  What I thought was most interesting was the big warning and explanation her parents had put up on You Tube regarding the video (which I saw after as I scrolled down).  They warn people that it’s graphic, and then explain their reasoning for putting it up.  The reason, quite simply, is that DIPG is a horrific and shocking disease and it killed their vibrant, vivacious, beautiful daughter in the same way that it kills all its victims- one faculty at a time.  They wanted people to have a full understanding of how awful this disease is, and wanted to show the end result, which is a family carrying their dead daughter out of the house.  I think it makes a lot of sense and I found it very brave and touching of them to share this extremely emotional and intimate moment with whomever wants to see it.  As of now, it has over 100,000 You Tube views.  Surprisingly, there are many, many negative comments left by people upset by watching something so “horrible”.  I understand that people may find it hard to watch.  It makes you sick to your stomach, and may wrack your body with sobs of distress.  But this is more “reality” than anything you’ll ever see on TV.  This is what DIPG does to its young victims and being upset because “it’s too hard” for someone to watch feels like a slap in the face to me.  If it’s too hard for someone to watch, snug and cozy in their own home with their own daughter six feet away colouring in her book, imagine what it’s like for those parents who had to watch their daughter slowly rot before their eyes as they watched, powerless, helpless to stop the horror unfolding.  They couldn’t just click off the You Tube video, or close the browser window.  This was their reality day in and day out, just as it was ours.

 

Thinking about Miette and her video gave me a chance to reflect on our own “online” journey with DIPG.  This website, at first set up for friends and family to know what was happening with Stella, became more public and has been followed by strangers near and far as well as those who know us, or knew us in the past.  We have strived to be open and honest on this site, saying the things we needed to say even if it was controversial, or difficult, or private.  We’re extremely pleased to have gotten almost exclusively positive feedback from people via comments, emails, etc. but whenever you put your most private photos, thoughts and feelings in a public forum, you run the risk of getting insulted as well.  There were a few people who posted/emailed when I got pregnant with Hugo expressing their concern that I got pregnant while on anti-depressants, or concerned that I was pregnant at all. “How selfish” one reader wrote, “to bring another child into the world when the ones you have need you so badly right now”.  Um, okay person I don’t know.  That’s a bit judgmental, isn’t it?  There was also the memorable person who wrote that Aimee and I “deserved” to have Stella die in this way because we were a Lesbian couple and it was God’s will, or the one who said that maybe the Lord was testing our faith in Him and his will. There was even one person who wondered if the entire Stella story was some elaborate scheme we had cooked up to elicit sympathy for ourselves and steal money.  A valid point, but one that stung nonetheless.  We had many, many, many people email with their feelings that we should be pursuing some type of treatment for Stella and suggesting different things, all meaning well, all sure there was something we could do to save her life because “anything is better than nothing” and “fight for her, dammit, don’t you see how much she wants to live!?”. But these were really the exception to the rules, and for the most part, the people who wrote and followed us online are the kindest, most generous, lovely and loving people in the world.  Living life online has restored my faith in humanity.  While she was alive, Stella was sent many presents and well-wishes, and we were gifted with incredible artwork featuring our daughter, handmade blankets, jewellery and the generosity of friendship and support.  We’ve made a lot of friends online.  Some we’ve been lucky enough to meet, others we know only in cyberspace, but all in all, it’s been pretty awesome.  There are a lot of good people out there.  A LOT! For better or for worse, we put ourselves on public display because we believed- still believe- in our heart or hearts, that Stella has things to teach people, messages that need to be shared, and an online forum is an effective and fast way to reach a lot of people in a short amount of time.

 

I hadn’t realized how important my online community had become until that last two weeks that Stella lay dying in our bed.  I found myself spending hours online as I sat next to her, watching her chest rise and fall, reading all the comments from people, especially on the now defunct forums, reading about how people were thinking of Stella and the difference she had made in people’s lives.  Those “How Stella Changed Me” messages were printed out and used to decorate the room her funeral was held in.  There were almost 200 individualized comments about Stella and it was my absolutely favourite part of the experience, thinking and knowing, and seeing that even though she lived only 3 ½ years, she made a difference.  She lived.  She mattered.

 

The day after Stella died, my sister signed on to her Facebook account and showed me how almost everyone she knew had their Facebook status changed to honour Stella.  It was so nice to see.  A couple of days later, I asked my sister to sign on to her Facebook again so I could see the lovely things people had to say about my daughter.  Except it was two days later, and Facebook had moved on.  For the most part, people’s statuses had returned to their own lives and I read things like “Going to Barbra Streisand concert tonight, I have the best wife ever!!!” and “Can’t wait for Hallowe’en, Robbie is going to be SpongeBob” and “New flavor of coffee at Second Cup- Fall Festival, yummy!”.  I remember looking at all the information flowing on that page and thinking to myself, “Wait.  Stella’s still dead.  Don’t you care anymore?  She died and you’re talking about coffee when my life has just stopped.  How did this happen?.”  It was a stunning revelation.  People care, people love us and Stella, but they have their own lives and even though they will continue to think of us, it’s not the same process as what we have to go through in grieving and mourning.  In Facebook time, a day or two is enough to honour a life lost, but for me it will be a lifetime.  Stella was my baby.  My body grew her.  I held her and protected her inside me for nine months.  Then for another 9 months, I stayed home and cared for her.  I cradled her in my arms and cooed in her ears.  I bought her dresses to wear and sang Carly Simon songs to her as she drifted off to sleep.  I put her on waitlists for daycares two years before she needed to go there.  I dropped her off at daycare and picked her up and I watched her learn to walk and talk and become her own person.  I planned play dates and took her swimming and taught her to go down the slide by herself.  She sang her ABC’s and was obsessed with wearing her “froggy boots” and her sunglasses.  Stella was my whole life, and when she died part of me died to.   Facebook could never capture the complexities of those emotions.  Nothing can.

 

It was good that I had that first realization to not be hurt by the way the online world works, because not long after I noticed that the “hits” to this website had been cut in half since Stella was alive.  Instead of being upset, I am surprised we still have so many people coming to visit.  Stella is gone, so for many people, the story is over.  But it’s not like that for the people who loved her that were left behind when she died.  The story now is how we are continuing to live without her.  How we find ways to integrate her into our daily lives by lighting a Stella candle at night, telling Sam and Hugo about her and showing them her photo, talking about her everyday.  At night once the boys are in bed and the chores are done, Aimee and I flop exhausted into our bed, leaving the spot where she died between us empty.  ;/Aimee always grabs Stella’s “Pink Kitty” and hugs her close, sleeping curled up against the cat’s unblinking black marble eyes each and every night.  Often our eyes fill with tears and we say to each other, “I miss Stella”.  Aimee sometimes apologizes saying, “I’m sorry that happened”, as though she could have prevented it.  Then we stare at the wall where Stella’s photo beams at us from a white picture frame and we get lost in our own memories and grief at having lost the little girl we put all of our dreams and energy into for years.

 

May is brain tumor awareness month.  To commemorate it, a small group of family and friends will be participating in Meagan’s Walk this year (http://megswalk.squarespace.com/).  Meagan’s Walk raises awareness of childhood brain tumors, and was started by a mother who lost her 5-year old to a DIPG tumor in 2001.  We will walk for Stella, but we will also walk in memory of Meagan, Emma, Johnny, Miette, Oliver and all the other kids who have died. And for our cute and lovely friend Evie, who is battling a brain tumor now.  We put together a team called “Stella’s Stars” and we will, in solidarity with hundreds of other people, march through the streets of Toronto wearing our hearts on our sleeves and our hopes on our hearts.

 

In honour of Miette and others who have died, I would also like to share a photo that may be “too graphic” for some people, but I think really highlights what DIPG does.  It was taken 5 days before Stella died, when Aimee and I lovingly washed her curls one last time so we could clip some off to keep.  I think it shows what this tumor reduced our daughter to.  Once a lively, energetic little girl, at the end of our 16 months after diagnosis, we were left with a tiny waif unable to hold up her own head, talk or move.  Like Miette’s family reasoned, it may be hard to see, but if we don’t open up our eyes and our hearts to how devastating this disease is, we won’t be able to find enough money and interest to find a cure.  Photos of Stella are at the very bottom, so don’t scroll down if you feel you can’t.

 

To our “online” friends:  Thank-you for continuing to be here, for continuing to think about Stella and care about her.  And thank you to all those who requested Stella Stars (www.stellastars.ca) to keep her story out there.  You may only be “online”, but you’re important to us all.

 

Signing off now, as along with living online, I also like to live offline and spend lots of time with my boys!

Hugo and I took a short trip to the Carribean, thanks to Poppa!


Sam marches around in Stella’s “froggy” boots, which he is obsessed with:


Stella, exactly two years earlier, wearing the same boots:

This is what DIPG does.  It turns this:


Into this:

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