Map

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: