Thinking About Death

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Thinking about Death

 

One thing about being a student in Funeral Services is that I think about death.  A lot.

I’ve seen babies who died.  Old people.  Middle-aged people.  Rich people with rack of lamb served at the funeral, and people having the government funded “Social Services” funeral.  People who were sick, people who died suddenly, people with 1000 well-wishers at their funeral, and people with only 1 or 2.  In death, those details become completely unimportant.  What is important is that whoever the person is, they are gone from this Earth forever.  Doesn’t matter if they were rich or poor, popular or solitary, kind or cruel.  Death is the great equalizer.

 

It always surprises me a little bit when I see a deceased person because, usually, everything about them is fairly intact other than the fact they’re dead.  I look at gnarled knuckles that I know someone probably used to run their thumb over in an act of affection. I touch feathery-soft hair that still bears the smell of shampoo.  I see lips that once left butterfly kisses on someone’s brow, and legs that ran across a beach, tiny bits of sand squeezing between toes.  All the parts of the person are still there, but in death it all stops and becomes still.  The person is suspended in time, frozen forever in that moment they took their last breath.

 

I think that’s why sometimes it’s so hard to see children that I haven’t seen in awhile.  Because they have, undoubtedly, gotten bigger.  They are older and doing new things and changing rapidly.  But Stella is frozen forever as a 3 ½ year old.  Passages of time for anyone—birthdays and anniversaries especially, are a concrete reminder of the fact she is not getting any older and never will.  No more firsts for her.  When I see kids that two years ago were babies who are now walking and talking human beings, or toddlers from then that are now zipping around on ice skates, or teenagers that are going to College this year, I am overcome with the reality that time does not stop for anyone…unless they are dead.

 

Last weekend I worked the funeral of a gentleman who had been diagnosed with an aggressive cancer and given 3 months to live.  A week later, before his wife and child had the chance to adjust to this shocking diagnosis, he died suddenly of an (unrelated) massive heart attack.

 

It brought the oft-used term “live each day as if it were your last” new meaning in my mind because even when you think you know when you will die, you don’t.  No guarantees.

 

I think a lot about trying to live each day to its fullest and think a lot about the mortality of those I love.  Sometimes I try to picture someone telling me I had three months to live.  What would I do with the time I had left?  What would be most important to me?  And if I didn’t get advanced notice, if I just didn’t wake up tomorrow, would I be proud of the person I am and the things I’ve accomplished?  Is my life meaningful?  Am I making a difference at all?

 

One thing about my grief is that it complicates everything.  Nothing seems easy anymore.  An innocent, simple social invitation turns into a huge commitment from me because I need to be mentally and physically prepared for what it will bring up.  Uncomfortable feelings of jealousy, self-pity and sometimes anger that threaten my promise to  “find the joy” in everyday.  It’s a process, obviously.  And where you think you will be, or what you think you will want, is not always clear.

 

The trouble is, the answer depends on the day.  And to be honest, it’s a lot of pressure to put on yourself– to have extraordinary moments each day.  Sometimes I just barely scrape by, ending the day on my knees wiping up pee from the floor, my greasy hair flopping into half-closed eyes.  Days I didn’t even manage to shower, let alone “change the world”.  Some days I am invigorated and excited, bursting with love and gratitude.  But most often, what I feel is neither up nor down, just an irritating restlessness. I spring ideas and dreams about my life off Aimee and they jump around like bouncy balls, confusing her, confusing me.

 

I want to have another baby— maybe.  It’s so much work.  The timing isn’t right.  We don’t have any money.  My kids are what bring me the most happiness, why wouldn’t I want more happiness? My career would have to wait- again. Things are manageable now and with another child, it would tip the scales.  But imagine how lovely it would be to hold another precious life in my arms…back and forth we debate this question.

 

I want to move out of Toronto—some days.  I long for the small town, community feeling of Waterloo, Guelph or Lindsay.  I want to live in a place where I can shop locally and where people know your name at the library and where the community group makes a skating rink for all the neighbourhood kids and maintains it and hands out hot chocolate on a Sunday morning.  But I don’t want to be far away from my family.  I don’t want to have to commute to Toronto for a job.  I don’t want to miss out on all the activities of Toronto (events and festivals) and I don’t want to go into 30 years of debt on a new mortgage.

 

I want to travel to far-flung places.  Sort of.  I want to see the beauty of foreign lands with my own eyes, run my hands over history, experience the excitement of new foods and new cultures.  But new things also make me uncomfortable.  And I don’t like not having running water or flushing toilets.  Sometimes the unsanitary conditions of places I’ve visited stressed me out to the point of tears.  And I get nervous about trusting people in places I’m unfamiliar with.  Travelling to foreign places always seems like it’s fun and exciting, but sometimes the reality isn’t as wonderful.  And it’s so expensive to travel, especially with kids.  But the rewards can be immeasurable.

 

Back and forth, bounce, bounce, bounce.  I’m unsettled and jumpy.

 

I try to figure out what I really want, but the problem lies in the fact that the only thing I know 100% for sure, is that I want Stella back.  And that can never happen.  So I find myself searching for something else to fill the void. But there is nothing.

There is no child that can ever be born with her mischievous grin, warm hands and bouncy curls.

There is no house or community in the world that she will be waiting for me inside, eyes wide open, waiting for the next adventure.

There is no country that she will suddenly appear in to give me a hug and lead me around by the arm.

There is no job and no course that can fulfill me the way being her mother did.

 

 

I keep trying to find my footing, and failing.  It always feels like something is missing, like the answer to the question isn’t quite right and nothing really fits properly in my world.  It’s because she’s gone.  From the day she was born, she was the axis upon which my world turned.  After her diagnosis, the focus was even more on her.  Then she was gone and there are hundreds of directions to turn in, but none of them have her, so my world is off the axis and spinning wildly through the universe.

 

Sometimes I think that’s why it’s difficult to find my way — because I am frantically trying to escape from who I am, trying to be like everyone else.  What I should be doing instead is looking inward and honouring the fact that I am different because Stella lived and Stella died and that reality makes me experience things differently.

 

I think about and see death every single day.  I know both how ugly and beautiful it can be.  And remembering that we will all die someday is a very powerful tool for focusing on what matters most in life.  I don’t have to change the world to be important or to say I lived a good life, I just have to be myself.

 

“Your time is limited.  Don’t waste it living someone else’s life” – Steve Jobs

Boys paint together at Stella’s beloved Kimbourne Drop-In Centre:

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 Sweet Little Hugo:

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Sam, Gracie, Hugo and Auntie Juju make cupcakes:

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Joy:

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Parenting for Keeps

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Parenting Stella after her DIPG diagnosis was hard in the obvious way of being totally heartbreaking as we watched our child slowly die, but in another way it was extremely easy.  Fairly soon after her diagnosis, Aimee and I adopted the “Whatever Stella wants, Stella gets” mantra of parenting.  I’m sure it’s every 2-year olds dream to demand whatever they want like a mini-dictator and have every adult in hearing distance go running to make every dream come true.  I remember once morning at 6:45am, Stella requested cupcakes for breakfast and we were all out.  My dad (“Poppa”), heard her and hopped right into his car and drove to the 24-hour supermarket down the street, returning with cupcakes within minutes of her request.  That first fall after her diagnosis, we literally watched 13 hours of Dora the Explorer each day.  Sitting on the couch, bodies aching, eyes burning from watching the television, we dared not turn off Dora or suggest anything else because this was what Stella wanted.  DeeDee bought her every piece of clothing you can imagine that had Dora on it; pants, pyjamas, socks, shirts.  When she showed an interest in reading things you could see or feel, GrandPa and Nanny Sandy bought her every single children’s book Indigo carried that had any kind of pop-up, or textured page.  In winter when Starbucks came out with a “Holiday Sandwich” Stella liked with stuffing and cranberries in it, Tutu would go to multiple Starbucks in a day trying to find one that still had the seasonal sandwich in stock.

 “You want 16 chocolate Timbits, Stella? Sure”.

“You want to sleep in bed with your mommies every night? Absolutely!”

“You want to go to the zoo this morning and then the farm this afternoon?  Of course!”

“You don’t want to brush your teeth?  Fine”.

“You want to read 2 hours of bedtime stories?  Happy to”.

“Ice cream for breakfast?  Everyday, my love”.

We just did anything and everything she wanted.  Nobody worked.  Nobody needed to cook (our friends and family literally fed us for 18 months).  Nobody had anything else to do other than play with Stella and give her everything and anything she wanted.  She sat on that couch and gave orders like the Royalty she thought she was, and we just followed orders all the while doing funny voices and ridiculous dances.  With no need to think of the consequences of what doing everything your 2-year old tells you to do, Aimee and I just enjoyed watching her glow with light and joy.

But parenting Sam and Hugo is different.  Sam is older now than the age that Stella was when she was diagnosed (he’s 28 months), and Hugo is 18 months.  They test us.  They push us.  They demand things constantly.  And I’m having trouble figuring out how to parent for keeps— how to balance the need we all have to instill discipline and boundaries, while still giving enough to ensure Stella’s lessons of fun and love are our guiding principles.

After you lose a child, you know how quickly a small, beautiful little life can be ripped from your arms.  It makes sense to take nothing for granted and to waste no moment.  It’s a goal to try to speak calmly to the boys no matter what is going on and to create fun and beautiful memories with them. But at the same time, I can’t just parent with complete indulgence…with a total lack of discipline and no use of the word “no”…but I want to. I want to because parenting Stella became so much more fun and happy when I did that.  But we were only going to have her for a short while, so the long-term effects of this extremely permissive parenting, were not an issue.  So, I struggle.  I give in to the boys a lot.  And recently, I’ve noticed that, in some cases, my boys are becoming unruly.

When Sam calls to me at 4am and asks me to lie with him in the bed, I know I shouldn’t.  I know it’s better for him and better for my sleep if he learns to just put himself down.  But when he wraps his tiny toddler arms around my neck and pulls me in for a cuddle, I want to freeze time.  I think about how soon it will be that he’s saying, “Mo-om!” and rolling his eyes and doesn’t want me anywhere near him.

Sometimes my arms ache from carrying Hugo around all the time.  He wants to be held constantly.  It makes it hard to cook, eat, fold, clean, etc.  I should just put him down…I’m spoiling him.  But how much longer will he want to be holding on?  Soon enough, he’ll be pushing me away.

I want to give them everything they want…cookies…staying up past bedtime to read books in bed…sips of my ginger ale…hooky days from daycare.  But I know I shouldn’t, and can’t.

I watched Sam and Hugo this morning, both totally naked, leaping from the couch to the pillows they had thrown on the ground.  They were laughing and shouting and climbing.  They had never looked more like wild monkey’s to me.  I kept saying, “Samson…don’t stand on the couch”, “Hugo, no jumping on Sam”, “Sam and Hugo, please be careful!”.  If they heard me at all, they didn’t show it.  They threw toys and spilt milk and knocked over the side table and then Sam peed on the floor.  They were wild and I couldn’t control them.

I knew the lack of discipline I’ve been giving my boys was serious when I worked a funeral on the weekend (as part of my school program for becoming a licensed Funeral Director), and I was in constant awe of the fact that when I gave people directions at the funeral, they actually listened to me.  It had been so long since that happened!  I said, “please come to the visitation room if you haven’t paid your final respects” and an entire room full of people got up and went to see their loved one next door.  I was actually stunned for a moment that anyone paid attention, and then I felt completely elated.

I had spent 20 minutes that same morning chasing Sam around with a pair of socks, trying to get him to put them on.

Let me tell you…being elated that a group of people at a funeral followed the simple directions of their Funeral Director is not a good sign of my expectations of people.

 

So, how do you do this?  How do you parent a child as though you’re going to get to keep them and send them into adulthood?  What is the magic recipe for fun/freedom/self-expression vs. control/safety/discipline?

I have no idea.  I’m getting quite used to being clueless when it comes to parenting.  It doesn’t scare me too much anymore that I have no idea what I’m doing.  Some days it’s just about surviving.  Some days it’s about creating memories.  Some days it’s easy and some days I just want to pluck my eyebrows out one hair at a time because I think it would be less painful and tedious than parenting.  Mostly, I just work hard each day and do the best I can.  Some days I kick ass.  Some days I get my ass kicked.  But everyday, I make sure I tell my kids that I love them.  I hope that’s enough to get us all through the rough patches, and I hope they remember that when I have to do and say things that they don’t understand, and don’t like.

Tonight getting ready for bed, both boys sat happily in my lap and pressed their soft cheeks into my neck as I read stories.  I inhaled the smell of baby shampoo and watched their eyes dance and widen as the “tickle monster” made an appearance.  Tonight the boys didn’t seem to care if I was good or bad at parenting, they just cared that I wrapped them tightly in towels after bath so they didn’t get too cold, cared that I sang a song while they brushed their teeth and cared that I knew exactly where Spot was hiding during story time.

All three of my kids are totally different.  They grow, they change, and the way I parent them changes.  I change.  Stella, Sam and Hugo have all shown me new things to find joy in, and new ways to look at the world.

There is a saying that says, “Children learn what they live”.  If this is true, no matter what happens as we continue this great unknown parenting journey, Hugo and Sam will learn three things for sure: love, joy and chocolate timbits.

For today, that’s enough.

A picture perfect family…NOT!  (Photo by Heather Pollock):

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Even sitting still for a picture is impossible! 

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 Playtime! (Hugo is wearing Stella’s old pyjamas):

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Colouring on the paper is optional (Stella’s rule that Sam follows):

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Couch cuddles:

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Stella, June 2011:

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Beauty in an Endless Winter

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There is a stillness tonight that I haven’ t experienced in a long time.

Maybe it’s because Toronto is under the siege of (yet another) winter snowfall, which is muffling the noise of the city.  Maybe it is because Aimee is away on a trip with her dad and sister, so I am alone in the house with the boys.  Maybe it’s because it’s late, the kids are sleeping and the TV and lights are off.  I don’t mind quiet, but stillness makes me uneasy. Stillness allows the tears I hide and the sadness I swallow to shuffle to the surface, and gives space for memories of life “before” to try to make themselves known.  But I don’t want to go there.  I won’t.  I still can’t look at videos of Stella, or too many photos.  I can’t allow myself to remember the day she was diagnosed, or the day she died.  I consciously keep my thoughts and memories positive and as un-specific as possible.  It is how I am able to live right now.  Not denial about what happened and how it happened because that would negate the beautiful lessons she taught me, but more deliberate control over what I will think about in order to stop from sliding too far into the dark hole of depression and anxiety. I promised myself that when Stella died I would integrate her qualities into myself, so that I would never lose her.  That’s how I choose to honor her nowadays.  Not by remembering, but by forgetting.  Not forgetting her, but by forgetting all the parts of her diagnosis and illness that were horrible and sad and difficult.  I choose to focus on her laugh and her Spirit and remember her small, soft hands, nails painted all the colours of the rainbow, holding onto mine.

This month, as I brace myself before stepping outside into the winter storms, I’ve been feeling like grieving is one big, long season of freezing winds, snowdrifts and slippery patches of ice.

But sometimes, when you least expect it you can find beauty in the winter.  So, in the cold stillness and silence of tonight, I am also thinking about Baby Stephanie.  Thank-you to everyone who read Auntie Angie’s posting about this special little girl. (LIN HERE).  Sincere thanks to those who shared it, who gave what they could, who spread the word and who took the time to learn about this precious baby whose time on this Earth will be short, but meaningful and important.  Because of the generosity of strangers, Stephanie’s mom Cherry will be able to stay home with Stephanie for a little while longer.  When your life is lived in weeks, not decades, even two months is an amazing amount of time.  Like Stella, Stephanie is a precious gift who reminds us to take nothing for granted, to live one day at a time and to celebrate every single tiny moment in life.  I was so grateful for Auntie Angie’s posting about Stephanie; for the reminder during this endless winter of grieving that there is incredibly good people in this world who care about complete strangers, and for the reminder to tackle the problems of just one day and stop asking the “when-why-how” questions that were so prevalent when Stella was alive.  I’m grateful for Stephanie and her beautiful love story, because I was beginning to feel stale in this month of February.   Beginning to slip back into the dark place of not wanting to do anything anymore because it is too hard.  Because I miss Stella too much.

Because I just don’t belong any longer.

It’s the one thing that I still struggle with, even after all these months of being mother to a dying—and now dead—child.  I just don’t fit into the world.  This society that we live in is built completely on the idea of Justice.  Right from the time of Plato, Justice has been described as the first virtue of social institutions; the foundation on which society is built.  It is a universal concept built on the rudimentary law of physics that for every action, there is an equal and opposite reaction.  But what happened to Aimee and Stella and I was completely unjust.  So how am I supposed to live by the rules and societal norms of a world that betrayed me such in a horrible way?  As much as I am trying to be “normal”, I just can’t stand to hear people complain about things like traffic and coffee and the fact they can’t afford new jeans.  I try so hard to socialize at school and laugh as freely and openly as everyone else, but sometimes I just can’t do it.  Sometimes I actually feel sorry for the people who haven’t experienced a loss like I have, because they are living their lives in a cloud of ignorance about what really matters in life.  It’s so crazy to admit that— the fact that I pity the people who haven’t experienced difficulties in their life, but I do.  Even though it’s incredibly hard, I believe that my life is better for having loved- and lost- Stella.

Most of the people I am meeting nowadays are destined to be acquaintances and not friends.  I don’t think I’ve made one single “best” friend since Stella died, because I don’t know how to interact with someone who didn’t live through that with me.  I know that someday I will have to expand my Horizons, but it’s so damn exhausting to pretend sometimes and I know with the friends and family that traveled the pathway of DIPG with us, I don’t have to make excuses or pretend anything.  I have the best friends in the entire world.  Friends who instead of running away when Stella was diagnosed, ran towards us and enveloped us in love and support.  They never once turned their backs on us, and I am forever grateful.  But at the same time, these friendships come at an emotional cost to me.  There is nothing anyone can do about the fact that Stella’s friends lived, and she died. But each time there is a new milestone for her peers to celebrate, it is a painful reminder that my little girl is not here anymore.  I am still invited to social events, which I am grateful for, but I often can’t join.  A skating party would be okay if I had an almost 5-year old, but a 1 and 2 year old don’t work at an ice rink.  Discussions about French Immersion and learning to read and sleepovers and birthday parties make my heart hurt.  To the 4 and 5 year olds, my boys are still babies.  They just don’t have that much in common yet.  But there is truly nothing to be done about it.  My friends and their children cannot—and should not— stop sharing their lives with me, and I adore them all, so it is a matter of working through the pain when it comes, knowing that the ultimate result (incredible friendships), is worth it.

In so many ways, this long and hard winter is reminiscent of grief.  I’ve learned the trick is to let go and embrace the coldness.

The tree outside our window is full of naked branches…bare, dead-looking in the coldness of the night. But , in reality, the tree is not empty and devoid of life if you look closely enough.  It is actually covered with beautiful ice that sparkles and shines under the streetlights.

And maybe that’s what grief really is…finding beauty in the beast of a long, cold winter. IMG_5803

Xavier and Hugo splash in the winter slush at Riverdale Farm:

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Poppa and the boys have breakfast at McDonalds:

IMG_6199Looking at butterflies at the Butterfly Conservatory in Cambridge:

IMG_6246Hugo and Tutu’s dog, Buddy:

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IMG_6247Hugo and Sam have evening cuddles:

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Stella loved every day of her life…even the snow days! February 2012:

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