Due For A Change

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Due for a Change

 

So, here we are.  A week away from the due date of our third child.  I am currently enormously pregnant complete with sore hips, constant tiredness, the inability to rise from the couch without help, and water retention that is making my feet look like Fred Flintstone’s.  I am at the point in pregnancy where every time I call someone they answer the phone breathlessly and ask, “did you have the baby?? Are you in labour?!!!”.  I see on the calendar that we are creeping closer and closer to when the baby will arrive, but emotionally I know my body is still hanging on to this baby. Our midwife joked that she feels like he may never come out if I don’t relax a bit.  Aimee and I had a 38-week ultrasound last week and saw the new baby’s face.  It looked like Stella’s newborn face.  Same chubby cheeks, same turned up nose, same hair (although we don’t know the colour and doubt it’s red, the little bits of hair sticking straight up were the same as Stella’s).  Seeing the ultrasound made me want to cry.  Tears of happiness, sadness, fear.  I am overwhelmed with emotions, feeling excited and happy and nervous and terrified all at the same time.  Feeling like I can’t believe we are here.  Wherever “here” is.

 

When Aimee and I decided back in early November to try to get pregnant again, Stella was 5 months into her DIPG diagnosis and losing her physical capabilities quickly.  Fall was when we saw her lose her ability to walk, talk, swallow very well and use her left hand all in a matter of weeks.  It was not an option in my mind that Stella would still be here 9 months later.  That would be crazy.  That would mean all the expert Doctors, the best in the world were wrong.  That would be inconceivable.  That would be impossible.  That would be…so Stella.  I should have known.  Aimee knew.  She kept insisting it was a possibility Stella would still be here, despite my eye-rolling and dismissive hand waves whenever she brought it up.  Aimee kept reminding me it was a possibility, even as I refused to believe it.  She was right.  Here we are on the brink of having three children.  I am terrified.  I keep asking Aimee, “how are we going to do this?”.  I keep thinking about how it’s going to be possible to manage to give Stella all the physical, mental and emotional attention she will need when we have an active 9 1/2 month old who is crawling everywhere and needs more and more stimulation as well as a newborn with the sleep deprivation and neediness that comes with it.  Aimee just keeps looking me in the eye and assuring me we will figure it out.  I want to believe her and be as confident as she is, but I’m not there yet.  I want to be able to give all my children the love and attention they need to thrive, but we are barely making it with two kids.  Barely getting the cooking and cleaning and laundry done in between caring for the two kids we already have, balancing naps and meds and paying bills and…now three kids!???  It feels like something’s going to have to give.  We have often spoke about how 13-months into Stella’s diagnosis we are feeling tired and as though our support people are also feeling the stress of having lived like this for over a year.  Living each day to the fullest is a good thing in most ways, but it’s also an exhausting way to live.  The pressure of not “wasting” any days, the guilt you feel if you don’t think you gave 100% as a parent each and everyday when you know those days are numbered, the frustration at putting your own life and wants and needs aside day after day after day, the difficulties in balancing trying to plan for the future, appreciate the past and live in the moment.  It’s not easy for any of us and I fear that with the addition of a newborn to our already insane lives, we are about to push all the people who have supported us past their breaking point.  And there is still so much of this journey left to navigate.  Yet despite these feelings, we are so excited to meet our new son and to introduce him to all the people we love most in the world.  We chose to have this baby and we have no regrets, despite our nervousness.

 

There have been so many lessons that Stella’s cancer has taught us.  Literally hundreds of opportunities for both big and small lessons.  But I have always felt as though the lesson that has been hardest for me to learn, and the one that keeps popping up over and over again, is how little control we have over events we feel entitled to control.  And I keep thinking as things happen, “Okay. I’ve learned the lesson, I get it…” but then I get kicked in the ass with new things that pop up that seem to mock me and my continuous attempts to control anything at all, even as I proclaim I know I can’t.  But how can you really accept that you are powerless to protect your children from horrible things?  We are not raised to believe that.

 

I was giving a bath to Sam tonight.  He was splashing in the water and having a great time playing with bath toys.  My mind kept flashing back to when I used to give Stella a bath, back when she was his age.  Stella also splashed, wonderment in her eyes as she kicked her legs and watched the water lap up against her knees.  I remember Stella throwing the same rubber penguin in the air as Sam did tonight, and then trying to eat its beak.  Sam is still new to the “big bath”, and kept clinging to me for safety and looking over his shoulder to make sure I was still there.  At one point he turned around, flashed me a big smile while using my knees to pull himself up to standing, and wrapped his arms around me in a big hug.  Instead of getting that warm, happy feeling that I should have had, my eyes filled with tears.  I knew that in this moment Sam was completely trusting of me, dependent on me and looking to me to ensure he was safe.  And I thought about how many times in Stella’s life she had turned to me with a big smile, waiting for me to give her that feeling of safety.  To kiss her head when she keeled over learning how to walk.  To pick her up when she fell trying to climb up the slide.  To hold her in my arms while she fell asleep in a new place.  To gently push her into the room with a reassuring smile when it was time to start a new daycare.  And yet, when it came down to it, there was nothing I could do to prevent cancer from taking everything away from her.  But she still looks to Aimee and I to keep her safe.  I don’t know if she questions why she can no longer talk or move or play with her friends.  I don’t know if she watches Sam crawl around and pull himself up on furniture and babble and wonders when she will get to do that again.  But I know that when she is tired and wants to nap, she curls into my chest and closes her eyes.  I know that when she first opens her eyes in the morning, she rolls them as far as she can to the left to make sure I’m lying next to her, ready to carry her to the couch for breakfast.  I know that when she is unhappy she fixes her eyes on me and makes a whining, seal-like noise until I figure out what she wants/needs.  I know she needs me and depends on me more now than ever.  She has no idea how much I wish I could do so much more for her.  She doesn’t realize the guilt I carry with me each day because she grew inside me and now she is dying.  Aimee and I make sure she sees only our smiles and our delight in the smallest things she does, not the heartbreak that follows.  As Sam leaned against me in the bath, depending on me to keep him safe, I was reminded forcefully that for Sam and his brother-to-be, we have so little control over ensuring they are protected despite what we want to believe. 

 

Aimee and I can provide Sam and Flick with as much as possible to prepare them for what is to come, but life is so random.  I can’t really stop bad things from happening.  How frustrating.  Why do all the parenting magazines and specialists try to make us believe that if we sign our kids up for the right programs, put them on wait-lists in utero for a good daycare/school and buy them expensive lead-free wooden toys, we guarantee them a good future?  Sell that to S.L.’s family, who lost their vivacious and athletic 18-year old daughter when she was hit by a car that was momentarily blinded by the sun as she stepped off the curb.  Sell that to E.Y.’s family, who has just had their toddler undergo over a year of painful chemo treatments, only to find out the tumor has continued to grow and they have another year of treatments ahead of them.  Sell that to T. R.’s family who lost their beloved daughter to a random car accident as she was driving to the cottage for a fun family weekend.  Sell that to the 150 parents a year in North America who find out their child has a DIPG tumor.  It’s all bullshit.  But then again, it turned out to be bullshit that Stella would only live 3-4 months after her diagnosis.  It’s been 13 months and we just returned a few days ago from her Make a Wish Trip to Great Wolf Lodge in Niagara Falls.  A trip that she needed to be three (according to the Make a Wish Guidelines) to be able to take.  A trip we weren’t sure we could manage.  A trip Stella smiled and laughed and swam and enjoyed thoroughly.  A trip.  That’s what parenting Stella has been like for the past three plus years. 

 

Our family is due for big change in the coming week or so.  And even though I’m scared, I know deep down that life does not get better with chance, but with change.  Stella will meet her new brother, she will have had the opportunity to meet both her brothers before she dies.  That is a beautiful reality, a light in the tunnel of darkness she is headed towards.  We are having another baby.  Another boy. Another opportunity to have a bright future as a family. 

 

So here we go…again.  The only truth I can cling to as we move closer to this new phase in our lives is that we will continue to take each day one at a time and do the only thing for each other that we can— love our children wholeheartedly, love them completely, love them honestly, love them for who they are.  The rest, I trust, will come. 

Make A Wish Trip to Great Wolf Lodge, June 26-28, 2012:

 

Sam, Stella and Xavier at Great Wolf Lodge wearing their new GWL T-shirts!


Gracie and Stella getting manicures at the “Scoops Salon”:


In the lazy river with Auntie Heather


The Great Wolf Lodge Crew (Sam, Aimee, Auntie Angie, Juju, Mishi, Stella, Gracie, Auntie Heather, Xavier and Uncle Daniel):


Happy Make A Wish, Stella!



 

 

 


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Freckles (By: Aimee)

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Freckles (By: Aimee)

One of the things I love most about Mishi is her freckles.  Every summer, the sun lures them out and they form frames around her eyes.  I LOVE them.  When we found out that Mishi was pregnant I knew, that whether we had a boy or a girl, either way – he or she would have freckles.  When Stella burst her way into the world, curls and all, one of the first things I checked for as my eyes darted from head to toe was any trace of freckles.  I didn’t realize that freckles actually don’t show up on kids until they’re toddlers.  It took me months after Stella was diagnosed to realize the sick reality of many things, one of which was that we would likely never get to see freckles on Stella’s face because she would die before they had a chance to appear.

 

Over the past two weeks, we’ve ventured out into the land of the living as a family, making a few trips up to a cottage that my mom rented on the beach where my sister and I spent all of our summers growing up.   For me, visiting Thunder Beach is like going home.  It’s a sacred place where a group of old friends and I spent every waking hour together for a precious window of time each summer, year after year.  This was Stella’s fourth summer up at the cottage.  The first two summers were both as tiring and amazing as one could imagine it would be when introducing a baby/toddler to sand and water for the first time.  Last summer, our trip to the cottage was comforting and gut wrenching at the same time.  Back then, we were still in the throws of the shock that Stella was going to die, and the adrenaline that keeps you afloat just long enough to survive such a reality was starting to fade in our systems.  This year, when my mom said she was going to rent the cottage again, I though she was crazy.  There was no way we were going to make it up there with Mishi – a few weeks from giving birth and Stella sinking slowly but surely into the end of her life.  She did it for Gracie.  Going to the cottage is Gracie’s favourite thing to do and right now, all of us would do anything to make her happy.  My thoughts about the cottage rental quickly changed however, one day when Mishi asked Stella if she wanted to go to Tutu’s cottage.  Immediately she pushed out her own muffled version of “yeaaahhhh” followed by sticking out her tongue (which means “yes”) to seal the deal.  Within hours, we had our travel bags down from the attic and Mishi was already making a packing list.

 

A few days later it was go time.  We packed the van, strategically tucked Stella into her car seat so that she was comfortable and that her head didn’t flop all the way down onto her chest, and away we went.  Stella and Sam both slept almost all the way on the 1hr 45 minute trip.  My stomach was fluttering with worry on the drive up over whether or not Stella would have fun at the cottage.  She used to love it so much but sometimes it’s hard these days to predict what she’ll want or have enough energy to do.  When we arrived, Stella’s eyes got really wide very fast.  The door on the van swung open, Stella smiled and my heart was full.  As we went through the gate and she saw the cottage her entire face lit up and out came that “yeaaahhhhh” again.  Stella was glad to be at the cottage.  Within minutes, Gracie, Tutu, Auntie Andgie, Auntie Juju and Buddy the dog, emerged from the beach and the cottage was brimming with screeches, hugs and smiles.  When we ventured down to the beach, Stella’s face lit up again as she listened to Gracie explain the order in which we would play and do activities for the afternoon.  Stella’s energy that day was amazing.  Her eyes were open and her face was bright.  She was alert.  She was up for anything we asked her to do.  In less than a three hour span, she built sand castles on the beach with Tutu, went swimming in the lake with her Auntie Juju and Auntie Andgie, splashed Sam and covered him with sand, went in the kayak with Gracie, napped in her mama’s arms and fed Buddy treats in the shade.  For the first time in a long time, I felt happy.  I was happy that Stella was happy.  Waves of sadness followed like they always do.  Sadness for what could have been as I watched other parents chase their kids around the beach but thankfully, these feelings didn’t last long.  There was no time for that.  Stella had too much to do at the beach.

 

After sitting on the couch, watching an episode of Stella and Sam while holding hands with Gracie, Stella made her long awaited trip to the store for ice cream.  As we set out for the short walk to the store, Gracie pulled the large, red wagon that Stella was laying in.  When the store was in sight, Gracie all of a sudden took off, pulling the wagon at what seemed to us like an uncontrollable speed.  We all gasped and chased after her to make sure that Stella was safe.  When I got far enough in front of them so that I could look back and brace myself to grab the wagon and pull it to the side of the road, there was Stella – her head bouncing back and forth off of the various pillows we stuffed around her, legs crossed in what looked to be the most uncomfortable position possible, and a HUGE smile on her face.  In fact, she was letting out a belly laugh that I haven’t heard in months.  We all looked at each other with a shared feeling of weightlessness.  Stella was elated to be at Toula’s store.  Toula, the lovely woman who (along with her family) owns and runs the corner store, is loved by all who know her – including Stella.  Last year Stella spent half her time at the cottage having stand – off’s with us as she would yell “I want to go see Toula NOW!”  As we wheeled her into the store, her face lit up and there was Toula waiting to give her ice cream.  Stella had so much fun that day that we decided to stay the night.

 

Mishi and I continue to be amazed at the love, kindness, generosity and support of others throughout this journey.  It’s the foundation that holds us up and we would not be able to start each day without it.  When we arrived at Thunder Beach, an old friend had already dropped off a tray full of sandwiches for us.  In the morning, another friend appeared on the beach with Timbits for Stella – a morning ritual that she shares with her Poppa.  Thanks to a few childhood friends and an army of incredible people that make up the Thunder Beach community, Stella now has a beautiful playhouse that was built in honour of her.  Our friends decided that they wanted to honour Stella in the best way they knew how – building her own playhouse.  Stella’s absolute favourite part of the cottage is a small, plastic playhouse that sits in the local park.  Last year, she spent all her time there, operating a Tim Horton’s drive through out of the window.  She would sell us Double Doubles for $400 and bagels for $5.  She called it “my playhouse”.  The playhouse has just been completed and has a sign over the door that reads “Stella’s Place.”  Thunder Beach has always had a piece of my heart and now it holds part of my soul sitting just inside the white fence at the Club House.

 

After that trip, we went back up to Thunder Beach again and then one more time after that.  This time, we took Auntie Heather and Xavier and once again, Stella had a blast (especially when Auntie Heather squished herself into Stella’s plastic playhouse).  We ended our jam-packed week of cottaging, camping and sunshine almost happy, rejuvenated and exhausted all at the same time.  Shortly after our adventurous week started to wind down, Mishi made a discovery that filled my soul from the inside out – just under Stella’s right eye is the first dusting of freckles.

 

Somehow, amidst the cruel reality of the tragedy and profound loss already caused by Stella’s tumour – both Mishi and I find true comfort in her freckles.

 

Pictures from Thunder Beach, Summer 2012:







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This is Stella

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This is Stella

 

When Aimee and I first started this blog, it was just supposed to be a way that our friends and family could get information about Stella’s cancer, our well being and our goings-on to save us from having to field multiple emails, phone calls and questions.

 

But over time, the blog evolved into something so much more .It has become a place where Aimee and I share our struggles, our triumphs and our story with everyone as we try to navigate both Stella’s fatal brain tumor, our own lives, hopes and dreams for the future.  Much of the time, the blog is about our attempts as parents to accept and understand Stella’s journey, as well as our goal to give her the best life possible despite the grief that hangs over us like a grey fog.  But, at its core, this blog is still a love letter to Stella’s life, and, hopefully, a way for her brother and brother-to-be to get to know her better and  be a witness to what our family and community did for their sister.

 

Unexpectedly, we have been overjoyed and overwhelmed at all of the people who have journeyed with us the last 13 months via this blog— friends and family of course, but also acquaintances and strangers who have learned to love our Stella, and become part of all our lives in that strange way that only the Internet can connect you.  This has been the most magical and rewarding part of having this blog.  When you hear that your child is going to die, before their life even gets started very much, one of the things you struggle with is this horrific thought that the world will never get to experience how incredible and wonderful your child is— that they will be gone before they had the chance to make a difference.  But this blog, and the people who write to us and support us have taken away that fear by telling us over and over again that they DO know Stella, they WILL remember her, and she HAS changed them.  It is all we ever wanted for our daughter…for people to know how special we think she is.

 

It occurred to me recently that many people who come here know a lot about Stella, but maybe some don’t.  So, Aimee and I wanted to tell everyone a bit about our Stella, both before and after diagnosis.  This is what we came up with. This Is Stella

 

Stella was born in Toronto on April 18, 2009.  She was our first child.

Stella’s full name is Stella Joy Bruner-Methven (named for her two great-grandmothers, Estelle Mohr & Joy Bruner)

Stella, from birth, was a handful.  She had the attention span of a gnat, the energy of triplets and the stubbornness of a mule (or Aries).

Stella crawled at 6 months.

Stella’s first word was “Dog”  (she loves our dog , Lucy)

Stella’s first day of daycare,  when we picked her up at the end of the day, a staff described her to us as, “a force to be reckoned with”.   This has remained our favourite description of her.

Stella was the biter in her infant room.  In her first toddler room, she was the pusher and in her second the hair puller.  By the time Stella was two we had accumulated 26 incident reports from daycare. 

Stella walked at 14 months

Until recently, Stella began every morning at 5 a.m. and was ready to run from the moment her eyes popped open

Stella insisted on picking out her own clothes from the time she was 15 months old

Stella’s favourite foods are/were avocado, waffles, hamburgers, macaroni & cheese, ice cream and butter (which she really believed was a food on its own)

Stella has been on an airplane 12 times (round trip to NYC 3x, Ottawa 1x, Mexico 1x, Pennsylvania 1x)

At 18 months old, Stella could empty the dishwasher and put away all the silverware and plastic bowls/plates.  At 20 months she could empty the dryer and help fold. At 21 months she decided it was more fun to just throw those things instead of helping

Stella has been to Great Wolf Lodge in Niagara Falls 4 times (5 as of next week)

Stella’s best friend is her cousin Gracie, as well as her buddies Flora and Arin

Stella’s favourite colours (in order) are green, purple and pink

Stella’s favourite TV shows were Dora the Explorer, Olivia, Yo Gabba Gabba and Stella & Sam

Stella’s favourite books are/were Adele & Simon, Mortimer, Yes Yes No No, There’s Going To Be a Baby, Stella & Sam and anything Sesame Street

Stella’s favourite songs are You Could Have Been a Rutabega (Paul Caldwell), Oh Susannah/Stella (Brad Needham), These Are the Sounds The Animals Make and Raise a Little Hell.

Stella’s favourite animals are dogs, cats and monkeys

Stella has been camping twice, horseback riding once, Maple Syruping twice, apple picking twice, swimming dozens of times, to eight different cottages and too many play dates to count

Stella’s favourite sayings were, “I don’t like you”, “Oops, I forgot” and  “No”, followed by a giggle and running away.

Stella’s favourite place to visit is Riverdale Farm

Stella has never once in her entire life been afraid of anything

Stella doesn’t believe in the following words: “no”, “can’t” and “never”

Stella’s cancer does not define her

Stella has smiled everyday of her life

 

 

Here is a very quick slideshow of Stella from birth to last week.  In every single photo, I can see her spirit and light.  We hope you can too!.

 

http://www.youtube.com/watch?v=LbvlWdYU1rk&feature=youtu.be

 

 

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Someone Said…

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Someone Said…

 

Sometimes people say things and, for better of for worse, you continue to hear the echo of their words in your head.

 

This week, someone said to Aimee and I, “…you’ve got to get back to the land of the living.  Don’t just sit at home day after day waiting and watching for Stella to die.  That is an intolerable way to live”.  This person was so, so, so, so right and has given us a little boost of energy and optimism to get of the couch and try our best to make the most of what time we have left with Stella.  It is completely intolerable to sit hour after hour in the living room with the air conditioner humming, the TV droning on in the background and Stella breathing steadily in and out, staring at the wall while Sam practices his crawling and plays with his toys inside for hours on end.  We may have a few weeks left with Stella, we may have more, but we decided it would be nice to enjoy this last summer together as a family, in whatever ways possible, instead of just crying in the dark house while life buzzes around us outside.

 

So…this week we pushed Stella, and ourselves, to live a little.  We went to Thunder Beach (Aimee’s family cottage area) twice, camping at Sibbald Point and small day trips to Riverdale Farm, Sobey’s, the local farmers market, etc.  All have been successful (to various degrees), and all have made Aimee and I feel a little bit more in control of ensuring Stella has the most opportunities possible to continue to live, even as her body is dying.  And she has responded beautifully.

 

I often think that what sets Stella apart is her refusal to do what everyone expects of her.  And she has been that way since birth.  Literally, since birth she has defied what every baby book, sleep expert, behavior specialist has said a baby/toddler should be doing.  So, when Doctors say she has 3 months to live…or another few weeks…or whatever, she doesn’t let that stop her or dictate what he does.  When we push her or challenge her, she never backs down.  I’ve mentioned before that I hate the term “fighting” when it comes to cancer or living, as I don’t think it’s something to be won or lost, but I have to say that Stella is doing her own version of a fight…which is more like a rebellion.  She rebels against expectations, against barriers we have inadvertently built for her, against every “Stella can’t…” that we have vocalized.  I just find her strength and perseverance amazing.

 

I try so hard to follow her lead each day but, personally, it’s still a struggle for me.  I wish I could sit here and write that seeing Stella laugh as she lay in her red wagon, propped up by multiple pillows while Gracie pulled her wildly, was enough to fill my heart to bursting with love and appreciation, but that would be a lie.  I want to be able to tell you that seeing her eyes widen with joy when her favourite song comes on the car radio and she moves her head ever so slightly to the right in her version of “dancing” makes me laugh out loud with joy, but it’s not completely true.  It would be wonderful to say that the glow of the campfire on her beautiful face as she roasted her first marshmallow melted my heart and made me smile for hours afterwards, but that would be leaving some feelings out.  These things are true, but the emotions that come at this time are not as simple and pure for me as they seem to be for Stella.  For me…all this still isn’t good enough.  And I feel guilty for thinking that, and for saying that, but I still get stuck sometimes thinking about how it SHOULD be.  How instead of lying in the wagon, she should be running next to Gracie along the dirt road, both of them kicking dust up with their heels and giggling hysterically.  I see her sitting on her beanbag chair, still and mute as we pack up our tents from camping and think about how she should be hiding in the forest with Flora on a scavenger hunt while we shout at them to stay in sight.  I want her to be running and laughing and skipping and talking and doing all the things that a 3-year old is supposed to do.  All the things we pictured her doing when we looked down at her in our arms as a baby, her plump cheeks rosy, her little chest rising and falling, her life full of possibilities and promises, all seem so empty now. My throat closes with rage and hurt when I imagine that she has been robbed of her life and her childhood by one of the rarest cancers in the world.  That all those people who love her will be forced to live the rest of their lives mourning her.  That her brothers will grow up with parents whose hearts are permanently broken.  I wanted so much more for her, and giving up on those dreams continues to be a challenge for me, although the acute pain I felt last summer has dulled somewhat to a constant ache.

 

I am happy to see my daughter smile, and Aimee and I will drive 5 hours in one day just to make it happen.  I am grateful to have had so much time with Stella.  I am thankful that she can still get enjoyment out of life and spend time with the people she loves.  I guess I just wish the reality was different.  But it’s not, and even a year after Stella’s diagnosis, this is still a bitter pill to swallow.

 

I have to constantly remind myself that my primary job as a parent is to ensure that Stella is comfortable, well taken care of, loved and protected.  The rest of my dreams and wishes for Stella are just that— my dreams and wishes—not hers.  So as we continue to navigate this unknown journey of learning to live with dying, I find comfort in looking at the pictures form the last week (we took 800 photos in one week!), and seeing that the happiness she is getting from her life is as uncomplicated and pure as that first moment Aimee and I laid eyes on our newborn daughter, not that long ago.

 

Someone else said something to me a year ago that has been echoing in my head all week.  When I said, “No!  You are too little to climb to the slide by yourself”, a defiant and fiery toddler leaned over at the waist, narrowed her eyes and said,  “No Mama!  I don’t like it when you say ‘No Tella’ to me.  I do it.  Tella do it”.

Yes Stella, you certainly have.

 

Some of the pictures I’ve been looking at from the past week…

Watching the sun set:

Flora and Stella cuddle and look at books:


Flora helps give Stella her bottle after they fell asleep under the stars, camping:


Swimming Stella:


Family Boat Ride at Thunder Beach:

Stella in the kayak being pulled around the lake:

Sleeping Cousins:


 

 

 

 

 

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The Great Escape

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The Great Escape

Yesterday Aimee and I left Stella and Sam with our awesome family and went by ourselves to a hotel in downtown Toronto for a 24-hour “escape”.  We checked into our little boutique hotel, took the elevator to the 26th floor and opened the door to our “Zen Suite”.  Dropping our bags in the entryway, we immediately flopped down on the bed. We lay in silence for quite awhile holding each other, enjoying the quiet, enjoying the cool air conditioning, enjoying the calm.  We went there to escape.  To escape the couch, to escape the pain, to escape the constant questions of “when, when, when”…”how, how, how”…”why, why, why”.  We had a fun itinerary for our 24-hour escape— an hour at the spa for a pedicure (Aimee) and facial (Mishi), followed by a nice dinner and (hopefully) a wonderful and luxurious sleep-in.  The longer I lay on the bed in that hotel room, the more exhausted I felt.  I realized that I am drained and there is barely anything left in me. I feel like a deflated balloon lying on the sticky ground, two weeks after the party ended.  So I let myself be exhausted, closed my eyes and rested while Aimee stroked my hair and watched TV.  It was nice.  It was simple.

An hour later, we headed to the hotel spa and changed into plush white robes and slippers.  The spa was beautifully decorated, lots of dark wood, a hot tub, tea, cushions and lounge chairs galore.  This was our escape.  At the spa, I lay on a table covered in a soft white sheet with my eyes closed, and waited for the esthetician to work some life back into my baggy eyes and water-retaining, hormone full, blotchy face.  I was hoping to just lie there and listen to the soothing music but…alas! I had a chatty esthetician.  She started by asking me how pregnant I am (36 weeks) and then if this was my first.  I told her it was my third (purposely omitting the fact Aimee gave birth to Sam in order to avoid more questions…), and then “the conversation” started.  She wanted to know the kids ages, so I told her 3 years and almost 9 months.  Wouldn’t you know it, she has three-year old twin boys—Gabriel and Christian.  So, since we had this wonderful thing in common, she proceeded to go on and on about how much trouble it is to discipline her boys, what a fun age it is to have them running around, the hilarious things they say to her, how much they love playing soccer, the trouble they give her at bedtime, etc. etc.  As I lay there, trapped on the table with creams all over my face and a bright light shining on all my facial imperfections, I felt completely numb.  I mostly answered her with false smiles and “mmmhmmm”’s.  I didn’t want to lie about the reality of life with my three-year old, but I also wasn’t going to reveal the truth to someone I would be done with in 60 minutes or less.  So I just lay there and listened to her and allowed myself to think about how different my life would be if I had a three-year old that was also running around and sassing me and making me laugh with her wit and attitude.  One of the last things she said to me before I left her room was, “But the best thing about your children is, no matter how much trouble they are to raise, you know you will always have them with you forever, because children they don’t really die before their parents very often, so you know you will always have them to love and be proud of the whole rest of your life”.  She really said that.  Truly, those exact words.  I wandered numbly back to the spa and sat with Aimee as her fluorescent pink toes dried and told her what had happened.  She didn’t say much because there isn’t much to be said.  Aimee and I left our house yesterday because we wanted to escape.  But the reality is, there is no such thing as escape.  We can pretend to be two regular, anonymous people enjoying a short get-away, but we can’t escape the reality of our life.   We are part of a secret club of grieving parents wandering around trying to act normal.

The reality is, we went away because we are acutely aware of the fact that Stella is fading.  Day by day she is eating less, smiling less, awake less, moving further away from us and our life.  Everyone around us can feel it.  She is slipping away.  She is so skinny now that you can count her ribs and see her hipbones.  Last week, I forgot to pack a change of clothes for her in the diaper bag, but when I needed to change her I was able to put her in a shirt and shorts that belonged to Sam instead.  She easily fit into 6-month clothing.  Her arms and legs have zero muscle tone now, the limbs are soft and pliable like bread dough.  Her eyes are in a half-open state most of the time, even when she is sleeping.  Her mouth hangs open, dripping drool much of the time.  Even her hair—her beautiful, red hair, has faded somewhat into a lighter red, sometimes even appearing blonde in the sun.  She still wants to see her friends, but there is little we can do to force interaction any longer. The tumor makes it very difficult for her to show emotion now.  We have to guess how she is feeling, what she wants.

I used to wonder if her death would be sudden & shocking, or slow and drawn out.  Now I know with some certainty that it will be a slow blurring of living and dying, kind of like a watercolour painting that is a mixture of washed-out, flickering brushstrokes whose meaning changes depending on how close you stand to it.

Even though Stella was born in the Spring, it has always been the Fall that reminded me most of her.  I think of the Fall as crisp and clean.  There is a feeling of expectation in the air, a quickness in everyone’s step as they hurry along.  Fall is a time of beginnings- starting school, starting work after summer vacation, starting to plan for the winter season.  Fall is when the world around Ontario explodes in colour as the leaves transform on the trees, little bursts of fiery energy heralding a new season, an escape from the sweltering unrelenting heat of summer.

Even though it is summer now and the scorching sun has turned the grass in our yard brown, and sweat forms on Stella’s nose most of the day and kids on vacation play tag and bike ride on the street long after 9pm because of the long summer nights, I still have a sense of Fall being near. It’s because I can clearly see another similarity between Stella and the Fall— the image of the leaves on the tree slowly fading and dying.  Beautiful, golden orange leaves that silently glide down to the ground resting on the cold ground, sleeping to the lullaby of the wind.  Battered and bruised, colour fading to brown, but still leaves until a final gust of wind picks them up and leads them to a secret corner where they are returned to the earth in a motion so natural it is almost unseen.  They escape the cold of winter, the blanket of snow.

There is no escape from the reality of losing our precious girl to this horrible tumor. No hotel, no dinner, no season, nothing will make a difference in the end.  It’s an unbearable reality that we need to learn to bear.

Stella’s impending death is a prison we can’t escape from, but I try to remember that she has made it as easy as she could for us.  She created bars made of sun, walls made of beautiful memories, a door made of laughter and a lock that holds my heart.  She will continue to fade away and one day soon she will be gone from this Earth forever.

Ironically, it is her who will have escaped and Aimee and I who will remain trapped in a world without our beloved girl.

Stella visited Riverdale Farm on Friday:

Stella helped Arin celebrate his third birthday on Monday:


This is the tree Stella’s friends bought for her and planted outside Riverdale Farm last fall.  Aimee took this picture and we were surprised to see afterwards the butterfly-shaped Rainbow hovering amongst the leaves…so surprisingly beautiful…so Stella!


 

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