Definitions

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Stella Update

Before I launch into the myriad of thoughts rushing through my brain, I will give a brief update on Stella, since most people who read this blog are probably much more interested in that than my own muddled thoughts!

 

Last week, I really thought we were going to lose Stella.  For a span of five days she slept.  All night and all day with very, very brief periods of being awake.  She barely ate or drank anything.  Her colouring was grey, her skin clammy.  Aimee and I spent the days in silence and the nights crying in our bed, staring at Stella and hardly breathing because our chests were so tight with the realization that we would have to learn to live without her.  Our intuition told us this was “it”.  We were incredibly sad and scared.  But Stella, who continues to confound me even in her journey to death, had other plans.  On Tuesday she “woke up” and she has been awake ever since (except for the night…thankfully she leaves that part up to Sam).  We take daily walks to our local burger joint.  We visit Auntie.  We have tea parties on the couch.  We feed Sam.  We eat. We laugh. We read.  We visit.  We live.

 

So…there you go.  She is doing so well that we are starting to wonder if she might actually make it to Christmas.  It doesn’t seem like such an impossibility anymore.  Stella refuses to tell me what her plans are, but I promise to keep everyone updated if she ever does.

 

Now back to my muddled brain.  I was thinking today that one of the things I have gained from this experience thus far is a deeper understanding of some commonly used words, that somewhere along the line have been redefined for me.  They might not be dictionary definitions, but they are lived definitions.

 

Definitions

 

 

 

BRAVERY

 

Bravery is three teenagers (C, N & T) who, even though they know Stella is dying, choose to be with her and play with her and throw parties and give her gifts and shower her with love and affection.  It would be so much easier for anyone, but particularly teenagers, to stay away from us.  To not come over or call because it’s easier to put it out of your mind and create distance between our reality and other peoples lives.  It hurts less if you don’t see Stella and know how she is being slowly taken away from us.  I have adult friends who have abandoned us during this journey stating it is “too hard for them”, but these three incredibly youth continue to come.

 

 

 

Bravery is doing it because it is hard.

 

 

 

Bravery is all the people who push their own fears, anxieties and needs aside and just play with our daughter and son.

 

 

 

Sometimes, bravery is just showing up.

 

 

 

STRENGTH

 

Strength is finding out when you are five months pregnant that the centre of your life, your firstborn, is going to die and still having the ability and fortitude to look after yourself and your unborn child.  To push through the unimaginable pain and stress and continue to eat well, sleep as much as possible and remain upright without the crutch of alcohol, meds or physical and mental self-sacrifice.

 

 

 

Strength is smiling and laughing through your own pain.

 

 

 

Strength is carrying your friends and family when they can’t get out of bed.

 

 

 

It’s buying popcorn and Dora clothing and ice cream and Timbits because it makes Stella happy, even though she can’t swallow it or use her hands to pick it up anymore.

 

 

 

Strength is pushing through your own emotions and needs, giving all you have to give and wanting nothing more in return than to take home a pocket kiss from Stella.

 

 

 

FAMILY

 

Family are the people that you can be silent with.  Those who understand the spaces in which you are silent are just as important as those where you are speaking.

 

 

 

Family are the people that come when you call them but don’t get hurt when you don’t.

 

 

 

The ones who bring you food, who sleep at your house, who take your dog, who work hard to make you feel normal even though you don’t recognize who you are anymore.

 

 

 

Family are the people you cry in front of who ask nothing from you.

 

 

 

Family holds your hand when you are drifting into a dark hole.  They pull you out and hold you in their arms until you can see clearly again.

 

 

 

Family is warmth, hugs, babies, toast, nailpolish and red curls.

 

 

 

Family knows that you are all messed up inside and out, and love you anyway.

 

 

 

SADNESS

 

Sadness is a weight that pushes on your lungs and makes the air so thick you feel like choking on it.

 

 

 

Sadness is tears that are shed in silence.  They run down your cheeks and pool at the nape of your neck.  The tears taste like a mixture of fear and relief.

 

 

 

Sadness is helplessness.  It’s jealousy, confusion and loss.

 

 

 

Sadness is an ice cold wave that starts at your toes and moves up to the tips of your hair jumbling up your insides and numbing you completely.

 

 

 

Sadness is a glass that you thought was half full, but keeps leaking everytime you turn your back.

 

 

 

Sadness is a sharp blade that carves out pieces of your heart slowly and deliberately each time you hear about a party your dying child can’t go to, see a 2 1/2 year old running across the playground or walk past the community centre Stella used to swim at.

 

 

 

HONESTY

 

Honesty is looking in the mirror, looking at the people who surround you, and admitting that you’re not perfect.

 

 

 

It’s breaking down the walls that you spent your entire life building up and exposing your soul to criticism, judgment and pain.

 

 

 

Honesty is sometimes excruciating, sometimes humorous and sometimes it’s so foreign it actually feelsdishonest.

 

 

 

Honesty is hurting the people you love most in the world, but telling them it’s for their own good even if you’re not sure it is or not.

 

 

 

Living life honestly is strangely freeing, yet terrifying all at the same time.  It’s coming face-to-face with all the parts of yourself that you try to forget or push away.  It’s being scared and vulnerable.

 

 

 

Honesty is your heart breaking more and more each day, while at the same time increasing it’s capacity to love.

 

 

 

Honesty is a mixture of self-loathing and self-loving.

 

 

 

DEATH

 

Death is an action verb.  It’s confusing because what does it mean “to be dying”? Aren’t we all dying, from the very first moment we are born?

 

 

 

Death is box full of questions that are unanswerable.

 

 

 

It is giving up power, giving up knowledge, giving up the centre of your heart.

 

 

 

Death is a type of freedom for the one who dies, but a type of prison for those left behind.

 

 

 

Death for is a game of snakes and ladders.  We slide down, we climb back up, we slide down.  One day the game will be over, but no one knows when.  And you can’t cheat because the snakes will trip you up no matter what.

 

 

 

Death is not the opposite of life, but it’s partner.  They intertwine, they tango, they move in and out of one another with complete ease and beauty.  They are as co-dependent as the sun and the stars.  Samson means “sun”.  Stella means “star”.

 

 

 

Death is mostly looked upon about as something dark, yet people with near-death experiences constantly speak about “the light”, so death must come with extreme clarity.

 

 

 

Death is not an ending, but the beginning of something new and different.  I am unable to believe that with death there is no more, because that thought is unbearable to me.  I don’t know what comes after, but I know it has to be something.

 

 

 

LOVE

 

The definition of love could be extremely long and complex.  I’ve lost count of the amount of times I’ve told Stella and Sam that I love them.  I kiss Stella’s forehead over and over again in the day and say, “Stella…Mama loves you”.

 

 

 

Three weeks ago, out of curiosity I asked Stella, “Do you know what love is?”.  Stella nodded her head sagely.  She always says she knows everything you ask her.  Two year olds know everything.  But I was genuinely curious.  Love is one of those endlessly abstract things and I wondered what it meant to toddler who has heard it repeated constantly at various times and places by multiple people.

 

 

 

“What is love?”  I asked. She immediately looked directly at me (hard to do since her eyesight is waning), and without hesitation answered.. “‘Tella”

 

 

 

“Love is Stella?” I repeated.  She nodded and said with complete conviction, “Yes”.  Now each time I ask her that question, she gives me the exact same answer.

 

 

 

It turns out the definition of love is not that complicated after all.  Love is Stella.

 

Scrapbook Page by Heather Seyler

 

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Happy but Sad (By: Uncle Tristan)

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 Happy but Sad (By: Uncle Tristan)

 

 

Joy….a word to describe many things, especially feelings and the quote on the bottom right hand of the screen tells you about how the world describes Stella. To me the name seems like it was made to be her middle name. Stella is an amazing kid and so full of life and it saddens me that she may be gone soon. i will never forget when i first found out…. it was on the last day of school and when i got home i went upstairs to watch a movie and i saw Mish, Aimee and Stella’s house and I decided to pay them a vist to tell them about my last day of school. i walked right over and decited to watch my movie later cause i wanted to see Stella and give her a big hug and kiss and to tell her i will be home every day now. They weren’t home and i thought that they might be out so i decided to pay Noel and Heather a vist. Heather wasn’t home but Noel was and so he and i started talking and i asked where Mish, Aimee and Stella were. I was told that they took her to Sick Kids. instantly my heart dropped “oh my God, is she ok?” i asked. Noel responded by telling me, “they took her to Sick Kids ’cause she was walking funny but dont worry i bet its nothing she will be ok” but i was worried beyond belief. i went to bed that night very terrified, “will she be ok? will she get out of the hospital tomorrow and be fine?” these questions kept going in my mind until i fell asleep. The next morning i awoke to hear the phone ringing, i thought “is this good news? i hope so” i heard my mom gasp and i through “oh god that doesn’t sound good”.  I immedietly jumped out of bed and ran in to the bedroom worried, shaking and above all scared. She hung up the phone and right away i asked, “is Stella ok plese tell me she’s ok…” then she said the worlds that i throught i might never hear, the words that no one no parent, sister, brother, friend aunt or uncle wants to hear: “Trist, Stella has a brain tumor”.  Right after hearing that right away my heart completely dropped. I was beyond terrified, the most terrified I have ever been in my whole life. I immediately asked “can they remove it? Please tell me they can remove it.” My mom said “they don’t know but they are going to run some more tests. I started crying, I couldn’t believe it.

There was one thing that I was using to cope – about 3 years ago I attended a day camp at NFB (National Film Board of Ontario) and we were doing a thing where we walk around the room and we talk to people who we just met. But I noticed a little boy sitting down. I believe his name was Kai he looked about 11 or 12 years old he was just sitting there so I asked one of the counselors “is he ok?” one of them told me “When he was about 3 and a half he had a tumor removed from his brain and he can’t walk very well and every time he did walk someone would have to help”.  So, I kinda thought to myself I think this is gonna turn out ok and it got me thought the day but that night I slept not knowing what I would hear the next day. I woke up and I hoped for good news. My mom and I went to Sick Kids my heart was pounding like crazy and when I got to the floor where Stella was I saw some of our family and friends crying so much. I looked and I through “What’s going on? Why are you guys all crying?” Right after I saw Stella happy as ever, I ran over to her and picked her up in my arms and she gave me a big hug. I couldn’t take it any more I took Stella in to the play room and left her with one of the doctors and my Mom asked for a room that we could talk in. I couldn’t control my self I started to break down. They found us a room and thats when Mish told me the words that will burn in my soul forever. Mish looked at me and said in a very sad voice “Trist….she’s gonna die” I couldn’t take it I immediately started to cry more than I have cried in my whole life. I can’t recall the month of July very well. Maybe I used a lot of my energy to think about it. All I remember is that I saw a movie everyday to help take my mind of of the whole situation and would stop in to see Stella for a couple of minutes but besides that I can’t recall what I did. But I do remember the month of August cause i was at camp for three weeks. but it made me worry even more cause i wasn’t there to see her and i was scared that i would get a call saying that she passed away. Thank god i never got that call.

I saw her on visitors day and she looked great. But she had lost something…her ability to walk. So, i carried her all over and went swimming with her and she had alot of fun. And when it was time for her to leave he gave me a big hug and waved good bye. As i saw Noel, my mom, Aimee, Heather, Mish and Stella drive away, i through ‘only one more week and i can see her’.

The day i got home from camp my mom told me that we were all going to Sesame Place in Pennsylvania. So the next day Mish, Aimee, Heather and Stella boarded a plane to Pennsylvania. Meanwhile, Mom, Noel and myself where getting in a car and were on our way to meet them there. The 5 days we where there i felt normal… i know it sounds weird, but while we where at Sesame Place i felt the way i did right before she got sick. Calm , great , and glad to be here. But the funny thing is i cant recall those months either.

Fast forward to now: Wednesday November 16th 2011. Stella is doing ok but she doesn’t talk as much as she use dto. It takes alot of energy for her to say something but when she does talk she is still the Stella i know and love: She’s still in there. Stella and Mish where just behind me a couple of seconds ago as i am typing this, and Mish walked over to me and Stella said something that i haven’t heard her say in a long time. She said, “hi Uncle Tristan”. She smiled at me while she said it and opened her arms for me to give her a hug. I hugged her and i just felt sad but happy. and now Stella, Sam and Xavier are everything to me and when Stella passes she will have a huge legacy in this family as the happy kid who was very happy to be around people. And if i know Stella as well as i think i do, she’s a little warrior who will fight this thing as long as she can.  Stella i love you and i am glad to be your uncle 🙂

 

By: A very proud Uncle……… Uncle Tristan.

 

Photo by Silke Fisher:

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Stella a Week Ago (By Auntie Juju)

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Stella a Week Ago (By Auntie Jula)

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

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Time

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Time

Never before has time been such an abstract thing to me.  In my previous life (aka “pre Stella’s diagnosis”), I not only knew the date, day of the week and time, but I could rhyme off my rather complicated and ever-changing schedule quite easily.  However, since Stella’s cancer diagnosis, time has not been measured in anything that makes sense to me and I have trouble knowing the time of day it is, the day of the week—even the month sometimes.

 

The world outside our house seems like a foreign place now, the life we once led a distant memory that could very well have been anyone’s life.  Now time is measured in alarms going off to remind us to take an array of medications.  The island in our kitchen is littered with pill bottles for various ailments for all the people who live here.  A veritable alphabet of narcotics from A to Z (Ativan to Zoloft) and everything in between…..morphine…ondanzetron…advil…cipralex…ativan…valium…perkoset…gravol.  

 

Without the comfort and organization that the knowledge of time and space used to give me, I feel like I’m free-falling through life.  The lighting, temperature and feeling in our house in exactly the same night and day, season after season.  I do remember certain dates… June 14th (diagnosis day), October 20th (Sam’s birthday), December 25th (Christmas).  That’s about it.  

 

For the last couple of weeks, there was a change in our lives that was more than the simple addition of Sam.  We also, inexplicably, got a little bit of our Stella back too.  The first two weeks after Sam was born, Stella made a mini rally back to health that seemed almost miraculous.  Her energy improved, her mood improved and she seemed to come alive again.  We went for walks that were requested by her, we dusted off the tea party set and hosted some really wild parties, we gave Sam baths and helped change his diaper.  We started reading books again.  Stella told knock knock jokes (not good ones, but really…are there any good ones???).  She even agreed to go trick-or-treating.  She lasted about 15 minutes before falling asleep in my arms, her drool running down my shoulder.  Aimee and I took it all in, breathing deep breaths of red curls, brilliant smiles, cool wind on our skin, soft hugs and kisses.  I didn’t update the blog for over a week because I was much too busy living my life to even write about it.  For the first time in a long time, I was able to just feel happy and grateful and as though there was a small window in the days that let the sunshine through the cracks again. 

 

Then, yesterday, the colour went out of her cheeks again and the brightness faded from her eyes.  She spent almost the entire day sleeping, sweaty and colourless on the couch without any interest in food, or television, or kisses.  Aimee and I hope that it’s just the change in her medication (we upped her morphine intake on Tuesday), but it’s such an emotional roller coaster and I feel like I’m literally holding my breath as we all wait to see if this is just a small dip, or if this is “it”.  On days like yesterday, the clock is completely meaningless, the day of the week, temperature outside, month, completely irrelevant to our reality.  Time has become an ally and an enemy all at once.  I’ve ripped down the calendars that used to carefully map out our plans for the week.  Plans full of school assignments, work, dinners, playdates, toddler classes in swimming, singing, soccer.  I haven’t bothered changing the clocks in our house from the timechange.  Who cares, what difference does it make?  Time only takes me further away from Stella and closer to the time when we will need to live without her forever.  

 

The days are marked in the number of Dora episodes we can watch at a time, and we sit in the living room hour after hour on the couch while the world spins around us.  I have realized that grieving can be a very selfish and self-centered thing.  I don’t have the energy anymore to work at my personal relationships, hygiene, hobbies, interests, future.  I live in a bubble where the only realities are a three-week old baby and a two and a half year old girl who are living parallel lives going in completely different directions.  For every gain that Sam makes, Stella seems to move backwards a little bit.  Sam can hold his head up pretty well now, Stella has lost the ability to sit up unassisted.  Sam is awake more, Stella is asleep more.  Sam will soon start to babble, Stella has almost lost her ability to speak entirely.  Sam’s future seems endless and bright, Stella’s seems short and mysterious.  It’s an uncomfortable mix of pleasure and excitement at our new son and fear and sadness for our firstborn.  Our attention is split and I can’t seem to find a balance between the two lives Aimee and I are responsible for.  But each day, even on days like yesterday when Stella lacks the strength to chew food, she holds her arms out to her brother and holds him close.  The scent of life and death intermingles between them.  It still shocks me that this is my life, this is my reality.  This time is NOW, and someday it will be THEN as in, “before Stella died”.  

 

It’s strange to sit at the window and watch the world from inside.  We hear garbage trucks roar by, see the sun rise and set, watch streetlights come on. Time passes, unnoticed.  Time doesn’t exist anymore as a way to breakdown the moments of my life.  The only times that mean anything are the tiny instances when the four of us—me, Aimee, Stella & Sam, sit together on the couch in a huge mass of arms, legs, blankets, warmth and love.  That is when I take deep breaths of life and wish with all my heart I could truly stop the clock forever.

STELLA & SAM

HALLOWE’EN WITH POPPA (no—this is not our house!)

 

FAMILY NAP TIME

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Unfinished Thoughts (By Auntie Angie)

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Unfinished Thoughts (By: Auntie Angie Bruner)

As unhealthy as it may sound, sometimes I feel like Sam is mine.

 

I sleep on a futon mattress on the floor of the living room. Sam snuggled up against me or directly on my chest.  I disregard peoples warnings of the dangers of co-sleeping with a baby and the arguments people put forward that I’m spoiling him and setting up bad sleeping habits.  I wake through the night to feed him, make sure the blankets aren’t near his face, to check his breathing.  He comes with me to friends’ houses, work-related events, for coffee.
I like him close.
I hold him as I type this post with one hand.  I recognize that my deepening attachment to this little life may be in part to ease the anxiety and discomfort felt from the corrosion of the slightly bigger life I’m already attached to.  And I’m okay with that.
Julia and I bicker about his care like typical parents do, despite not being his parents.  Whether to use a soother, how many layers of clothes he needs for the weather, the reasons for his crying.  I find myself wanting to bring him to our house, away from the weight of what’s happening to his sister.  I want to protect him.  From this.  From everything.  (Although there’s no way in hell Stella would allow me to steal her brother, she often doesn’t like him out of her sight and directs his care from her place on the couch, and is doing a fine job of protecting him).  I want to give Aim and Mish the room they need for Stella.  With Stella desperately attached to Mishi’s lap, and Aimee with a separated pelvis unable to care for one child let alone two, both of them suffering indescribable pain,  I am given the room I need for Sam.
People obsessively ask me if Julia and I plan to have another baby, presumably because of my obvious attachment to this one.  Family members have been more than encouraging, pressuring even.  I cant help but wonder if it’s because they worry if something happened to Gracie, that we wouldn’t have a baby Sam to live for.  As if a second child would heal the loss of a first.
Sam looks like Aimee.  Same eyebrows, skin tone (albeit a bit jaundiced), nose, and upper lip.  I find myself filled with childhood memories of us when I look at him.  When we found out a few months ago that Sam was a boy, I was quietly disappointed.  I hoped for a girl, just as I did when Stella was born.  I wanted for my daughter to have the relationship Aimee and I had growing up and still have, the relationship Mishi and Heather have; tight, protective, bonded, connected.  The relationship Gracie and Stella had already begun developing, best friends.  When others found out Sam was a boy, they were quietly relieved.  A boy could mean the possibility of a different experience than the heartbreaking one with Stella.  Less triggering, less to compare, possibly less resemblance.  And it’s true.  Sam doesn’t resemble Stella at all,  he rather resembles Gracie a little bit.
Now that he’s here with us, I am infatuated with Sam exactly the way he is.  I’m even starting to see all of the possibilities for Gracie and Sam’s relationship, regardless of sex, separation in age, presence of Stella.
The other day I caught myself.  I had entered the house and walked right past Stella on the couch to find and hold Sam.  Unconsciously disregarding our ritual nose kiss greeting and her daily inquiring of what treats I had brought her.  When I realized what I did, I couldn’t stop crying in the bathroom almost all afternoon.
I’m not sure where this post is going.   i know it sounds unfinished, i guess my thoughts are just unfinished, i dunno.


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