About (By Auntie Angie)

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> Stella has the softest little head with those perpetually messy red curls and the way she moves her head around now that the tumour is changing her. She bobbles a bit and nestles under your chin or against your cheek or your shoulder and she has the softest little head. I slept beside her, both of us totally out, for hours the other day, our heads together and holding hands. I want to remember what she feels like in these small intimacies, my physical memory vying for engagement in this slow process of preparing to give her up. She must feel that too because she has started to choose me to reach for more often, and her physical closeness is such a comfort.
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> Yesterday she came out to show me her boo boo, and explain that she had a band-aid on her shin because tutu gave her a raspberry. Yesterday she called me into the bedroom to proudly show off her naked bum while aim changed her diaper, then let me finish dressing her and I almost had her off in play when she noticed aim trying to take a lunch break at the table with a plate of sandi’s chicken and promptly put a stop to it. The other day I was playing with her at marilyn’s and mish said to me its so great to have this break and stella looked up at the word “break”, held out her arms and returned herself to mishi. Stella is smart, and tricky, and is perhaps becoming more of both as it gets harder for her to squeeze the words she wants to say out into the air where we can hear them. I have taken to asking her questions now quietly in her ear and appreciating the now characteristic pauses and hair twirls while my question goes in, tumbles around in her mind, and sometimes provokes an entire paragraph or sometimes just a sentence or an almost imperceptible shake of her head in horizontal or vertical motion. I am tuning into the very subtle stella signals, the signs of anger before she gets angry and the barely there smirk that will turn into an explosion of a smile in a minute or two.
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> We took her and gracie to zephyr last friday to get out of the city for the day. She was in my arms for such a long time, directing the precise collection of toys around us, whose voice to do, who should set the store up and put the baby bear to bed and get the bubba and lie on the couch and drive the tractor. She grabbed my face and turned it so our noses were touching and said, hi, Jula and grinned in a lovely genuine expression of greeting to me in my essential self, past my face and all of my hang-ups, straight to the core part of me that experiences real connection so very rarely. She wanted me to hold her hand all the way up and back in the car and I had all that time to figure out which way it is easiest for her to get a comfortable grip on my thumb which even in her deep sleep she can maintain.
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> She likes to play food-based games, which is great since so much of my head revolves around food anyway. We plan menus, go shopping, all in our heads and with the help of whatever happens to be around us, sticks and stones and wet sand, or stale goldfish crackers, or the imaginary bottomless pits of our pockets. We cook things, taste them and add another stuffie or sprinkle of diaper rash ointment. We serve them to all of our imaginary friends, 3 and 4 course meals lucky them, and then pack up and drive off to our next everyday adventure (once we’ve got all the people out of the trunk and into the cab of the car, and dealt with any tummy aches in the crowd).
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> Whenever stella asks me for something I ask her if she wants to come with me to get it and I often turn a simple water request into a traveling mission, probably because I want her to feel in control of her time with me and I like moving with her just like I like moving with gracie. That might be the underlying restlessness that pema chodron talks about, the generalized fear that keeps me from spending too much time in front of the tv or in bed or in a crowd without chasing a kid, carrying a kid, doing the dishes or tripping to the store.
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> A few weeks ago someone crashed into me on my bike and I ended up with a pretty deep cut on my leg. Stella has asked about that cut, kissed it band-aid on and off, patted it under my jeans (ouch, stella pats are not gentle!) so many times its really funny. Her capacity for concern is surprising as she is 2 and living by default in a self-centered universe. Gracie too is so able to sympathize and she was also obsessed with that cut (also with some very un-gentle pats!). It is interesting that all this talk of booboos and band-aids, check-ups and doctor visits have entered our play but only in the most superficial way, in sharp contrast to her real medical reality. I am surprised maybe that she and I can still find joy in this specific theme of play.
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> I am grateful for this time off work, grateful for my health and all the rest that allows me the opportunity to feel grateful for every ounce of this time with stella. Stella has the softest little head and it is a relief to my own much larger and less soft one, to rest against hers, to hold her and only do one thing; be with stella.

 

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Loser

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Loser

 

When I was in High School, I was considered a “loser”.  I’m still not exactly sure what constitutes being a loser, I just know I was one.  While the jocks practiced football and the artsy kids painted their angst on large white canvases, I worked on learning Roch Voisine songs for French Club and building a chariot for the Classics Club.  Sometimes I would watch the “cool” kids from a distance and wonder what made them different…how they knew what to say and how to say it to make other people look up to them.  I often felt a bit behind, a little insecure, a little lost walking the hallways with my head down, trying to get to the “safe” space where my friends and I hung out (Mr. Curci’s Room in the Learning Centre) without someone hissing “nerd” or “loser” at me.  Even though since then I’ve gotten much more confident and comfortable with myself, there are still lots of times in my life when I feel awkward and like I don’t belong.  I’ve been surprised to discover recently that Stella’s cancer has brought back so many of those High School feelings of inadequacy and trying to find my place.

 

I don’t recognize myself anymore, that self that I’ve spent so many years learning to like and feel comfortable with.  I feel like I’ve lost almost all those “titles” the old me used to covet.  Do you remember when I had a busy life? When I worked all week and went to school two nights a week?  I was always rushing to drop Stella off at daycare and pick her up afterwards, rushing to make dinner and get her to bed so I could study.  Organizing playdates, apple picking trips, library dates, swimming and music lessons for Stella.  I was busy and I  wasn’t a loser anymore. I was a “mom”, an “employee”, a “student”, a “band member”, a “mommy friend”.

 

Now I am a non-working mom.  A non-student.  An anti-social person who has lost the ability to return phone calls, attend social events, send emails and even (horror of horrors!) went off Facebook.  I feel like a big loser, lost again in the big hallways, but without the safe haven of the Learning Centre where my friends waited for me.  Now the hallway just seems long and dark and lonely.  I know my friends are waiting for me somewhere, in some room, but I don’t feel cool enough to hang out with them right now and I’m not secure enough in “the new me” to know what to say or how to act.  If I don’t talk about how Stella’s dying, do people think I’m in denial?  If it’s all I talk about, will people be uncomfortable? If I don’t answer the phone, do people understand or do they think I’m rude?  If I lie about how I’m doing, does it make it easier for everyone else?  If I refuse to lie about how sick Stella is, refuse to believe in miracles and plan a trip to somewhere far away on Christmas Day because I know she will be dead by then, do people think I’ve given up hope or that I’m not even trying to “believe”…”have faith”… “fight”? I don’t know the “right” thing to say, I am unsure, scared, insecure.

 

This weekend I went to the zoo with Stella.  Stella’s two best friends (Arin and Flora) and their families met us there.  It felt so incredible to be outside in the sunshine with Stella and my friends and Aimee’s mom (Tutu).  Stella was in the carrier and for the first 45 minutes we were there, she had a great time looking at the animals and chattering to her friends.   I was feeling relaxed and happy.   I remember watching all the action and life oozing around us and feeling like the colours were particularly bright and beautiful that day.  Then, quite suddenly, Stella got really quiet and tired.  I could tell she wasn’t feeling well and she asked to go home.   I knew I had to leave, but I really wanted to stay with my friends.  I felt like that High School loser again, leaving the “cool” kids to go home and study French.  I contemplated trying to make Stella stay longer, but I knew it wasn’t fair to her.  Her head was heavy against my chest, her little curls plastered to her head in a sweaty mass. She was done, so we said our good-bye’s and after a quick stop to see some birds, Stella, Tutu and I headed for the gates.  On the way we passed the polar bear exhibit and I saw our friends again, though I didn’t stop to say hi.  Arin was racing around on his little car and Flora was chasing him.  Their respective 7-week old sisters slept  peacefully in their strollers and all the parents were busy dealing with active toddlers, looking for snacks and negotiating for their newborn girls needing diaper changes and feedings. I looked longingly at them as I walked by and had to fight the urge to run up to my friends and say, “Can I stay…please!?? Can I stay with you just a little bit longer?  Don’t I belong here too, with the cool people?  Didn’t I used to do this too, chase the kids and chat with you about daycare lists…do you still like me even though I’m only a shadow of the person I once was???” Then I looked down at Stella lying against my chest in her carrier, eyes half closed and felt completely drained.  I didn’t belong at the zoo chasing my active 2 1/2 year old. I didn’t’ have an active 2 1/2 year old anymore. I belonged at home on the couch with my daughter who has a brain tumour that is slowly killing her.  All of a sudden everything turned grey— the sky, the sidewalk of the zoo,the colour of the carrier, Stella’s skin. I just sagged under the weight of it all.  I am a loser again, but this time I’m losing my spirit and my confidence.

 

Have you ever gone to an antique store and seen how they often sell old photographs of people?  It always secretly breaks my hearts when I see the faces of someone staring intently at me from an old sepia photograph covered with dust in a pile.  I wonder how these photographs got lost and separated from their families.  I wonder who they once belonged to, and feel sad as I run my fingers over the tattered edges.  No one knows their name or anything about who they were. Nowadays, I feel like my life is turning into one of those sepia photographs, slowly losing colour and life.  Stella has gone from an active toddler who ran with rosy cheeks to meet me, singing and spinning with her friends, climbing slides, chasing her cousin, laughing, tantruming, teasing to a sepia copy of herself.  Stella is quiet now.  She doesn’t walk.  Her face is pale and drawn.  She prefers to sit quietly and read books or watch tv.  She gets tired at the slightest activity.  She doesn’t grab toys from the other kids anymore, or chase them giggling.  I still love my daughter more than anything on this earth, but feel as though I have already lost part of her.  Lost the part of her that was active, energetic, bright, sassy.  Lost the adventurer, the leader, the challenging child who never sat still and had so much attitude it spilled out of her curls in waves.  But for all I’ve lost, her smile remains as bright and beautiful as ever.  When she smiles at me I remember every single smile… from her very first one at 5 weeks, to the one she gave me this morning when we had a tea party on the couch with Poppa and her puppets.

 

Stella had a bad day yesterday.  A day where she looked really sick and acted really sick.  A day where we sat on the couch and watched thirteen hours and twenty two minutes of Olivia DVDs that a friend brought over a couple of months ago.  As I sat on the couch and the hours passed by, I began to feel like a used dishrag. I always thought that if we didn’t look at Stella’s cancer as a battle to be one or lost, there would be no loser.  I hate reading things in the paper that say, “lost a courageous battle to cancer’, or “fought for twelve years before succumbing” or worse, “beat cancer” as though it were a Monopoly Game.  I thought since we weren’t fighting anyone or anything, we couldn’t lose.  But I realized that today I am a much bigger loser than I ever was in High School.  Losing my daughter.  Losing my life.  Losing control.  Losing myself.

 

But I try to hang on to the moments this week that made me feel like I belonged…the Stellapalooza Birthday party.  The Christmas in September party.  Family visits where we laugh and make fun of my 9-month pregnant sisters Flintstone feet.  Tea and toast in the morning with my dad.  Sometimes I see a light at the end of the long hallway, but I can’t ever seem to get to it, so I just feel lost most of the time.  The only way I am found is when Stella smiles at me, and I’m terrified that the day she stops will be the day I truly, truly, become a loser… because I will have lost my soul, my heart, my reason for waking up.  I fear that when Stella stops smiling, so will I.  Loser.  Lose Her.

Not feeling very well today, but as beautiful as ever:

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Remembering (by Aimee)

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Remembering by Aimee Bruner

I remember the day Mishi told me she was pregnant.  Preoccupied with rushing home from work to see the progress on our kitchen renovations, I had forgotten that the results were due to come in that day.  Mishi told me that she bought me something at the mall and handed me a bag.  When I pulled out the tiny onesie, my heart was full.  I remember decorating Stella’s room over the course of a few months.  We would fold and re-fold her clothes and carefully arrange and re-arrange the furniture so that everything was just right.  I often found myself standing in the doorway of her room just staring, dreaming, wondering and longing for this tiny being to come and find me on the outside.

I remember looking over my shoulder in the car to catch a glimpse of the tiny car seat, empty and waiting for it’s future passenger to jump in.  I remember sitting at my desk and getting the call at work to let me know that Mishi’s water broke.  This took a little investigative work on my part, given that I’m married to someone who continued to grocery shop before calling anyone to let them know that her water broke.  I hung up the phone with adrenaline filling my body and let out a “Wahhoooooo!”  Instantly, I was surrounded by colleagues who were cheering and trying to help me log off my computer (I was too excited to do it myself).  I remember driving 90km/hr down Jarvis St. towards St. Michael’s Hospital and calling everyone I had ever met to tell them the good news.

I remember stepping out of the delivery room for five seconds to give my mom a hug and to off put some of my scared energy that was festering as a result of watching my wife suffer through unbelievable pain.  My sister jumped through the doorway and said “Aim, it’s time…..she’s pushing and you better get in there!”  The next hour and a half would change my life forever.

I remember catching a glimpse of the top of Stella’s head as she started to try to introduce herself to the outside world.  I could see her red curls  before I even knew what her face looked like.  A wave of emotion swept over my body and I barely had time to figure out what to do with it when the midwife said “Aimee can you hold her head as she comes out?”  And there she was…….a girl.  We had a girl.  When someone in the room shouted this news out loud, I remember watching my father throw his hands in the air as if he had just watched the Leaf’s win the Stanley Cup in overtime from the golds.

I remember every minute of that night we spent in the hospital.  There we were, the three of us squished into a hospital bed.  With Stella laying in between us, Mish and I just lay there staring at her all night.  We were so in awe of this little being that we forgot to put a diaper on her.  I remember sitting on the couch for the next few weeks, it total shock.  Mish and I were like deer caught in headlights trying to figure out how we were going to keep Stella happy and healthy.  It wasn’t always pretty, but we figured it out.  We’re an incredible team.

I remember the feeling of comfort that washed over me as I watched Stella happily crawl towards her new nanny with open arms for the first time.  I remember the first time she made it through one day without throwing up on the new outfit we put on her seconds earlier.  I remember the matching pyjamas that I bought Stella and her cousin Gracie for Stella’s first Christmas.

I remember the day that Stella took her fist steps.  Our lives would never be the same.  She never stopped moving.  Until now.  I remember hearing her say “dod” which turned out to be her first word (“dog”).  I remember the feeling of pride I would have when someone would look in my office at the picture of Stella and say “is that your daughter?”  I remember being so nervous taking Stella to her first day at daycare that I unknowingly drove through a yellow light.  It also took me a few seconds to realize that I was being pulled over by a police officer.  As he wrote up the ticket, he and Stella exchanged glances in the back seat.

I remember the day she started insisting on picking out her own clothes.  She looked like she was travelling with the circus but the adorable look of pride on her face quickly erased any feelings I had towards the 4 different pairs of pants she was wearing, one on top of the other.  I remember picking up the phone at the end of each work day only to hear the squeak of her voice on the other end saying “mommy are you coming home to see me now?”

I remember the time that Stella willingly leapt into each one of her grandparents arms for the first time.  I remember the smell of her cheeks and the top of her head.  I remember the way her breathing changes to alert you that she’s finally fallen asleep.  I remember the top of her hands and the bottom of her feet.

I remember everything.

I remember every second of every day since the moment we set foot through the doors of Sick Kids Hospital.  I will never forget the terror that ripped us apart every time a new doctor came in the room.  I will never forget the sight of my child – MY CHILD – in a little white hospital gown, on a stretcher that was way bigger than her.  I will never forget the words “mass”, “oncology”, “tumour” or “not benign”.

I will NEVER forget Stella.Stella two days before she was diagnosed

/p

 

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View from the Couch

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View from the Couch

 

As I write this post, Stella is sleeping beside me on the couch where we’ve spent the better part of the day.  She is wearing her purple sunglasses, which have the practical job of protecting her eyes from sunlight outdoors (the tumour has made her eyes super-sensitive), and the not-so-practical purpose of being something she likes to fall asleep in.  She is wearing a friendship bracelet given to her by our good friends Nicole & Cassandra, as well as a wooden necklace made for her by Flora.  She is clutching her “little Arin” doll who is wearing a ridiculously large and purple tutu left over from a tea party he got dressed up for this afternoon.  Safely wrapped in the red Pottery Barn blanket she has recently dubbed, “the snuggy blanket”, Stella is the picture of toddler contentment, literally surrounded by the love and warmth of family and friends.  It’s still strange to me to look at her and know that while she lay sleeping little cancer cells are rapidly dividing and wrapping themselves tighter and tighter around her brainstem, slowly and literally strangling the life out of her.  She’s so peaceful looking, how can something so violent be going on inside her tiny body?

 

Because months ago, Aimee and I decided against the only “life extending” treatment offered to us (radiation), we are no longer officially patients of neurology, oncology or neuro-oncology at Sick Kids Hospital.  We were referred right to Palliative Care and though we have an incredible Doctor who comes to visit each week, Stella is not “actively dying” at the moment, so mostly Aimee and I just plod along day after day, trying to manage Stella’s pain and navigating through whether her unhappiness is due to headaches from the hydrocephalus, frustration from being a normal two-year old, or something more sinister caused by the tumour (anything from nerve pain to frustration with trouble speaking, to tiredness).

 

In the last little while, Stella has become incredibly, physically, attached to me.  On days like today, where she doesn’t feel very well, I am pinned to the couch with her like a beached whale for hours at a time.  Today it was a total of twelve hours (with a few breaks in between) of me sitting on the couch, sinking into the soft beige cushions watching Treehouse on TV.  Stella will not let me get up…she even gets hysterical if I try to leave her to go to the washroom, so I have learned to eat, to pee, to live with my 2 1/2 year old glued to my body.  In some ways it reminds me of the newborn phase, when she was completely dependent on me but this is so much more frustrating because my 2 1/2 year old shouldn’t be like this.

 

Stella has always been a “mover and shaker”.  When she was just a few months old and I would meet other moms in a coffee shop for our “Monday Moms” group, I would spend the entire time with her strapped to my chest in a carrier bouncing up and down because if I tried to sit down, or stop bouncing, she would cry.  My family joked that it was because when I was pregnant with her I never stopped moving.  I wrote a statistics exam the day before my due date, walked everywhere with gusto and vigour and never lost my energy.  When Stella learnt to crawl at 6 months, then walk at 13 months, there was no stopping her.  She went where she wanted, when she wanted and even the dreaded “time outs” couldn’t contain her.  She loved to dance, and was fearless at the park climbing up to the slides and whooshing down with a huge smile on her face.  Neither one of us ever sat down.  Now, ironically, mostly all we do is sit.  Now Stella can’t go anywhere unless I take her there.  She sits for hours on the couch, unable to walk, but still can’t sit still.  She fidgets and wiggles around and tries to push herself up and get comfortable.  My body aches from sitting on the couch, from carrying her everywhere, from holding her up when she can’t do it on her own.  My arms burn as though I’ve been working out at the gym, my legs fall asleep constantly, my back and neck cramp up.  But the physical pain is bearable for me.  I carry her willingly because I want her close to me.  I want to protect her from the pain, from the world outside where her friends laugh and play at the park while she lays here drugged up on morphine.  The ache in my body is bearable, the ache in my heart is slowly killing me as surely as the cancer is killing her.

 

When Doctors first told us Stella had inoperable brain cancer and was sentenced to certain death, they estimated she would live around 3 months with no treatment.  The end of this week marks the three months they guessed for us and I still can’t believe it’s been only three months…and already three months all at the same time.    Stella’s health is slowly and steadily declining, but I’m quite confident she will outlive the three-month benchmark she was given.  By how long, I have no idea and that frustrates me each and every day.  Even as I try to take my own advice and live one day at a time, I am starting to feel more and more frustrated with her cancer, in constant limbo with no end in sight.  I don’t wish my daughter dead, I just wish I had some answers so I could picture my life.  Aimee is 5 weeks from giving birth to Stella’s brother and we’ve started calling it “The Great Race”…will Stella still be alive to meet him, will she be on her deathbed, or will she still be stabilized like she is now?  How can there be money in the budget to send troops to war, but not enough money in the world to stop cancer from ravaging our children?

 

Last week Stella had a bad spell of three days where she was extremely lethargic, sick-looking and vomiting.  Aimee and I were sure that this was “the beginning of the end”.  We called our families to warn them that the time of her death was likely approaching, and steeled ourselves for the long nights we were sure lay ahead.  Then Stella woke up after three days of illness and was back to the way she had been the previous few weeks.  Now we are back to worrying, waiting and wondering when that “end” time will be.  No one knows, no one wants to guess, no one ever wavers from the “we aren’t really sure, she’s a different age, the tumour is a bit different than typical DIPG” line I’ve been getting since it all began.  My body vibrates with the frustration this uncertainly causes for me.

 

Sometimes I feel as though Aimee and I have moved to a foreign land.  We have all these incredible family members and friends who email us to say, “thinking of you” and “love you” and “can we do anything?”, but they are all living in “the real world” and we are living on the couch.  The hours and days for us are marked by appointments and doses of morphine for the pain…then lactulose for the constipation the morphine causes…then zofran for the nausea caused by the lactulose…then advil for anything and everything else.  Yesterday I deactivated my Facebook account because I realized it just depressed me.  I’m jealous of the people who write updates like, “had a great day with my kids at the beach!!!” or “little Max won’t stop asking for more cookies, LOL” or “headed out of town for a wedding this weekend, hoping to return with a husband and a hangover!”  I am happy that my friends and family are doing well, I don’t expect life to stop for everyone, but it doesn’t bring out the best in me to read about it everyday, and I realized that there was no reason to keep torturing myself by reading cheerful updates on Facebook when all I want to post is, “watched the rain fall outside the window from my couch this morning and held Stella down while she choked down her medicine then cried when a school bus drove down the street”.

 

The scope of how much our lives have changed sometimes hits me just in waves… and at the oddest times.  When I have her in the carrier at the zoo and another mother with an infant in a carrier says to me as she walks by with a smile, “wow…you’re much stronger than me, I made my son walk holding my hand when he was a year old, I could never carry him around like that when he was that size!”.  When the lady at the Doctor’s office asks me if I have children and when I say I have a two-year old gushes to me, “oh if you think two is a great age, wait until she’s four!  Oh, at four they’re just so precious and fun, you’re just going to love it!”.  When I, out of habit, shut the door to the basement so that Stella doesn’t accidentally fall down the stairs, then remember she can’t get to the stairs unless I carry her there.  When I email the lady who sold me an RESP for Stella two years ago and tell her Stella is dying and she responds that if I “choose” to cash it in, I will lose hundreds of dollars I’ve contributed, unless I register Stella’s brother instead in which case we can just switch it over.  When I notice Stella’s friends moving forward…getting potty trained, talking more, running, growing while my child has reverted back to diapers, speaking becomes harder for her, when she is sitting, shrinking.  When my fiercely independent daughter grabs my neck at night and cries.  When she begs me to lie on her lap and strokes my hair and face, the way I do to her when she’s hurting, and begs me “don’t cry Mama!  Please stop crying”.  When we go to the park and I see the little pink slide, the one she climbed by herself just over a year ago then slid down, so proud of herself for being such a big girl.

 

The ironic thing is that the pain in our hearts belongs only to those of us that are watching it happen, not for the one person who its happening to.  For all that she has lost, Stella is remarkably happy and has adapted incredibly well.  “Dance, guys!” someone cheered on Stella and her cousin recently.  Gracie immediately started twirling and dancing and Stella sat on the floor and moved her arms around wildly, both of them smiling and laughing.  “Why aren’t you angry!??” I want to yell at her, “don’t you remember that you used to dance like that too!??”.  But Stella isn’t angry like we are.  She isn’t sad like we are.  She isn’t jealous of other kids like we are.  Stella is living her life as genuinely as she always has.  She is still liberal with her hugs and kisses.  Still giggles when we play patty cake.  Still begs to see her friends.  Still wants to go to the park, and seems content just sitting on the bench watching the other kids play.

 

Stella makes me realize that at two years old, she already knows how to live bigger and better than I do.  She appreciates every single bird she catches sight of, every tickle that makes her laugh, every visit from the people she loves.  She is my hero.

View from the couch:

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Great Wolf Lodge-ic

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Great Wolf Lodge-ic

 

How is Stella doing?  How are we doing?  Depends on who you ask and when.  The tumour is obviously doing exactly what the doctors said it would and growing aggressively, wrecking havoc on her little body.  She has lost the ability to walk completely and this week has also been unable to stand independently.  She has lost 11lbs so has no more little pot belly and her round, cherubic cheeks are a little less round.  The sunlight hurts her eyes so much that she needs to wear sunglasses when it’s bright out, or else she cries and begs for me to put my hands across her face.  Her arms shake with small tremors off and on all day and night and she is plagued by headaches that have worsened, due mainly to the hydrocephalus that the doctors think will kill her long before the tumour does.  We have started her on morphine during the day and night.  The morphine works to take the pain away, but in some ways it also takes Stella away as it tires her so much.  We are hoping that her body adjusts, but until it does, when we give it to her she sits staring off into space and does not react to anything much.  Her smiles are more infrequent due to the sedating effects of the meds, but when they come they are just as bright as ever and she remains generally happy and loving.

 

Aimee and I fight sometimes now, usually at night after Stella is asleep and we are exhausted from getting through another day being energetic around Stella, smiley around our friends, kind and gentle to our families.  We fight over silly and inconsequential things.  We fight to release some of the pent-up anger and frustration we both feel.  We say things we don’t mean, hurt each others feelings and then collapse into one another’s arms, holding on tightly, sobbing until our tears mix together and I can’t tell who is holding whom and who is crying where.  We cling to each other for dear life, knowing we need to get through this together, yet each of us feeling lonely in our grief even with the other right there.  We have never needed each other more, yet it hurts us both so much to see the other in pain, we sometimes have trouble expressing ourselves.  But each fight ends with an “I love you” as we kiss each other’s tears away and steel ourselves for the future, hurting in a way that only Stella’s parents could ever truly hurt.

 

We met with palliative care last week and the doctor, who is a lovely and genuinely caring man, tried as best he could to answer the same question I always ask him, the question that no one has ever been able to answer… “when is she going to die?”.  It seems so ludicrous to me that every single doctor we’ve dealt with since day one of Stella’s illness has been able to speak with absolute certainty that she will die, but no one has any idea WHEN.  Deep down I know it’s because they don’t really know and don’t want to lead us on, or lead us astray.  But I just want to know.  I need to know because each day I am hanging on by a thread and I don’t even know what to hope for anymore…hope for more time, or hope it all ends soon so I can stop fearing and start grieving.  The most I could get out of the Doctor was that he thinks Stella will die “in the framework of weeks”.  Like 6-8, but possibly longer and possibly less.  And I hear those words and they barely register in my brain.  I feel like I am living someone else’s nightmare.  At night, when the world is dark and quiet, I just stare at my face in the mirror, this face I barely recognize staring back at me, and I keep asking myself why?  why? WHY?  An answer never comes, just an old looking, tired face stares back at me blankly breathing in pain and breathing out sadness.

 

Do you know what I’ve done over the last seven days?  We returned from a friends cottage, finalized the details of Stella’s burial, met with the wonderful woman who will be officiating the service to discuss what we want remembered about Stella, went to the graveyard and chose and paid for her place in the Scattering Garden at Necropolis cemetery and in between had 2 playdates, 2 family BBQ’s, a small birthday party for Stella, a massage, facial and a three-day trip to Great Wolf Lodge.  Some days I look at my calendar and just weep.  My life is completely spiralling out of control and I’m just waiting to hit that big, black bottom with a huge smack that will render me immobile and in agony.

 

Yet despite the bad news, the sorrow, the frustration and the daily pain there are still sweet moments that creep up on me each day and make it possible to keep going.  I am learning so much about myself and the world around me.  Some of the best and most important moments occurred on that trip to Great Wolf Lodge this past weekend.

 

Have you ever been to Great Wolf Lodge?  It’s like a mini-Disneyland located in Niagara Falls where at 7:00am children still in their pyjamas can be heard screeching at their parents to buy them a doughnut for breakfast.  Where larger than life stuffed versions of wild animals talk incessantly on demand when children press a button (which the children do over and over again). Where in the waterpark so many children scream in delight as they dump buckets of water on one another that it sounds like one, big high-pitched squeal from a flight of birds.

 

Auntie Angie, Juju, Gracie, Aimee, Stella and I have just completed our third trip in three years to this child’s paradise.  The first time we went Stella was 11 months old.  Not quite able to walk, but she could easily pull herself up and we spent lots of time wading in the kids area and taking turns holding her in the warm pool.  She had a sunshine-coloured bathing suit with a little skirt on it and delighted in twisting her hips and making the skirt twirl as she balanced against the pool enclosure, making herself, and us, giggle.  Stella was waking up at around 5:30am back then, so when she got up we would leave the hotel room and sneak down to the “Great Wolf Room” where we would read books, play with stacking cups i brought and watch the rest of the hotel wake up.  I always laughed a little when I saw exhausted looking parents in their pyjamas lining up at the Canoe Cafe as soon as it opened at 6:30am, paying way too much money for cups of steaming coffee.

 

The last time we were at Great Wolf Lodge was in February.  Stella and Gracie ran rampant all over the hallways, chasing each other down the halls and screeching in delight as they balanced on the massive windowsills by the elevators that overlook the waterpark.  On that trip to the Lodge, Stella threw up on me one morning right on the carpet next to the animated tree in the main lobby.  By that evening, I was sick with what I now call “Great Wolf Lodge’s Revenge” and spent hours in the bathroom staring at the gaudy green wallpaper and wishing they made the wolf print look more like a wolf.  It was so irritating.  I swore never to return after that but…Stella and Gracie love it there and I want so badly to make her happy, so back we all trekked suitcases packed with snacks and books, back to Great Wolf Lodge.

Great Wolf Lodge-ic #1: Never say you can’t or won’t do something, because the universe has a way of challenging that notion.  Aimee and I used to talk all the time about how we would never be able to handle it if something ever happened to our child.  Working at a camp for kids with cancer and volunteering at a grief camp, Aimee has seen plenty of sadness in her work but we always assuredly said to ourselves, “boy…we’re so lucky that didn’t happen to us…”.  And then, one day it did.  And now we are doing it and living it and people are telling us they don’t know how we do it.  And I always think, ‘I’m not doing anything.  Can’t you see that I’m falling apart and my heart is ripped open, bleeding on the floor in front of you’.  But people don’t want to hear that, so I just say “one day at a time” and smile a fake smile, clenching my fists and swallowing a scream.

 

This trip, when the doors to Great Wolf Lodge opened up before us and I saw the grand living room, I was instantly triggered.  My mind went into overdrive with the hundreds of memories I have of Stella at various times and ages there.  I found it hard to breathe and my heart started racing.  I quickly swallowed one of my anti-anxiety meds and tried to get ahold of myself.  But all of a sudden it just felt like too much…too many kids, too much noise, too many memories…I looked around wildly, trying to think of a way to escape.  But of course, much like parenting a dying child, there is no escape so we just checked in and immersed ourselves in the howling of the lodge, ice cream pedicures and all.

 

Lucky for us, Stella adores both her aunties and so I was actually able to get a short break as Juju and Angie played with Stella in the hotel room.  They are both so different with Stella, but equally incredible.  Julia (Juju) has the patience of a Saint, and never tires of playing.  Her imagination is big and beautiful and she engages Stella in a way very few people can.  Andrea (Angie) is more realistic in her play, but incredibly gentle and will do anything it takes to make Stella laugh, including putting Carrot the Bumble Bee puppet on her hand and making him do all kinds of wacky things with a terrible British accent we all openly mock.  But stepping back, not having her in my arms for once, watching Stella play with Juju and Angie and Gracie, she didn’t look or feel as sick to me as she had earlier that day.  I had to look a bit harder to see it, past the morphine and the skinny weak legs, past the tick in her face, but I saw the sparkle in her eyes that had been there since the day she was born.

Great Wolf Lodge-ic #2: Stella is still here, even if she has changed a little.  I might have to work a little harder to find her sparkle, but it’s still in there and I should enjoy it now instead of dreading the future which is completely out of my control anyhow.  But I can control today and love her today and enjoy her today.

 

Our last evening at the lodge, I left Aimee in the hotel room to put Stella to bed and went down to the waterpark.  Andrea and I lined up and went on as many watersides as possible together.  As soon as the tubes would slide into the brightly coloured plastic silo’s I screamed at the top of my lungs…screamed and screamed until I couldn’t breathe and my voice hurt.  I screamed out the frustration and helplessness I feel about Stella’s cancer, screamed at all the people who say or do stupid things that hurt me, screamed for help, for rest, for peace.  I just opened up my mouth and screamed.  And it felt so good to be hurtling down those slides screaming at the top of my lungs.  Scream I told myself, just scream.  And I did.  By the end, I was panting but felt calmer than I had in weeks.

Great Wolf Lodge-ic #3: Just SCREAM.

After I screamed myself silly, I sent Juju and Angie away to the hot tub so I could hang out with Gracie.  Gracie, for those who have never had the pleasure of meeting her, is only a year older than Stella.  Aimee and I were so thrilled when Stella turned out to be a girl as we envisioned Gracie and Stella growing up as best friends, spending all their free time together, playing at the grandparents house, attending camp, being closer than sisters.  Gracie has beautiful olive skin, an athletic little body and huge green eyes framed by luscious lashes that look so much older and wiser than her 3-years.  I haven’t spent as much time with Gracie as I used to before Stella was sick.  It’s not because I don’t want to, it’s because Stella takes almost all of my time and energy.  Gracie was so excited to be at Great Wolf Lodge, she was literally bouncing off the walls.  In the pool together, Gracie and I sang and swam and she jumped to me.  I found myself laughing.  Laughing and really meaning it.  I was having fun with Gracie because I didn’t have to pretend anything with her.  We were silly together, and she jumped into my arms with full trust.  I realized that I do have the capacity to be truly happy, and that someday I will feel that way again.  Stella will be gone, but there are so many other beautiful and wonderful things in my future…like my son, like Gracie, like our friends and family.

Great Wolf Lodge-ic #4: Losing Stella hurts so much, but I need to remember that it’s also okay to laugh and have fun because long after Stella is gone, I will still alive and I deserve to have a good and joyous life.  I deserve to laugh again and love other children and let myself be happy.  In fact, I owe it to Stella and to her memory.

 

So there you have it.  Life lessons interspersed with all-you-can-eat-buffet, stuffed animatronics, water slides and cookies covered in one inch of icing.  Great Wolf Lodge-ic.  Howl away, world.

Gracie and Stella at Great Wolf Lodge, February 2011 (before DIPG entered our lives)

IMG_0465Stella at GWL, Feb. 2011:

IMG_0395Stella at GWL, September 2011.  Can’t walk, but we can still swim!:

IMG_2583

 

 

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