Walk the Walk

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Walking the Walk

I was giving Sam and Hugo a bath the other night, when I glanced at the side of the tub and noticed a green crayon mark.  I smiled to myself as I remembered the day that Stella had (unbeknownst to me), thrown a green crayon into the bathtub while I was running it, so that when she got in, she was able to get a big green swipe on the pristine white porcelain before I grabbed it from her hand with a startled, “Stella, No!”  I remember she giggled and splashed at me as I tried furiously to rub it off the tub.  I thought I’d gotten it all, but evidently there was a second small scribble that I had missed because there is was, looking like a crooked smile on the inside of the tub.

As I sat there watching the boys splash around, I wondered if my reaction would be the same now if Sam or Hugo suddenly produced a crayon from the bubbles and began to colour.  When Stella did it, I was upset.  I was frustrated and gritting my teeth at the fact that the tub was “ruined”.  One of the things I often talk about to people and in my blog is Stella’s lesson about living each day to the fullest, and not sweating the small stuff.  I began to wonder if, 20 months post-diagnosis, 3 ½ months post-death, I’m truly walking the walk of living better, loving better and parenting better.

The thing about change is that it’s hard and long-term change takes a huge effort.  It’s easy to change for a short time, but sooner or later most people revert back to their most comfortable selves or place.  So I began to think about whether or not there have been any truly lasting changes that I’ve been able to make.  It’s so easy to say, “I’m living a better life”, but is there concrete proof of it?  Here is what I came up with:

I know I walk the walk of “People are more important than things”.  I’ve really stopped focusing almost completely on objects.  I don’t care if the clothes I’m wearing are “cool” as long as they’re comfortable and seasonally appropriate.    I am now a huge proponent of buying clothing at Value Village (thanks Heather!).  I can’t bring myself to pay full price for something in a department store when I know I can get good quality clothes for a fraction of the price.  They’re gently used, but I’ve never had anyone look at me or my kids and say, “hey…did you buy that used?”  I would rather spend time with my friends and family than clean the house.  If I was offered a high paying job that meant I had to work 60 hours a week, I wouldn’t take it.  I even (gasp!) let the boys play with my iPhone.  They both love watching videos of Stella on there, and because she’s my screensaver Sam takes the phone every morning and kisses her picture, jabbing his finger at the screen and saying, “Della. Della. Della”.  Last week the screen of my iPhone shattered.  I didn’t care.  It still works and I wouldn’t give up the memories of Sam looking at his sister and kissing the screen each morning for anything.  So now the phone is encased, broken screen and all, in a protective carrier and the kids still get to play with it.

I know I walk the walk of “Now is what matters”.  I spend less time dreaming about the future, and more time being grounded in the present.  I used to always be trying to multitask; answering messages while cooking dinner, texting while bathing the kids, doing homework while eating dinner with Aimee.  Now I try really hard to make time for everything, without having to do multiple things at once.  Instead of getting frustrated and shoving toys at Sam so I can try to empty the dishwasher, I involve him in the process.  I talk to him and engage him and let him “help”, even though his helping means having to rewash all the spoons he bangs on the floor or sucks on.  It makes a chore fun.  It makes my time with him more rewarding.  It allows me to focus on him and empty the dishwasher as a secondary thing instead of the other way around.  I have gotten bad at responding to emails and voicemails.  Sometimes I’m weeks behind, but it’s  okay because I’d rather be playing with the kids, helping Tristan with his homework, watching a video with Gracie or visiting with friends and family than sitting in front of the computer by myself.  I feel like I’m enjoying life more by simply focusing on one thing at a time instead of multitasking.  Multitasking is no longer a goal of mine, it’s something to be avoided when possible.

I know I’m walking the walk of “Fearlessness”.  There are so many things I used to be scared of that I just shrug off now.  Simple things used to throw me off, like having to ask for help carrying my stroller over a snowbank.  I would walk two blocks out of the way to avoid asking for help.  Two days ago I flagged down a stranger from the opposite side of the street to help me lift Sam and Hugo’s stroller over a puddle.  I shouted at him over two lanes of traffic and pretty much shamed him into helping me.  It’s a small thing, but a big change for me.  There are still lots of times that I feel as though I don’t fit in, or I don’t want to do things because they make me sad but I’m not afraid of them.  I can go to a wedding by myself now.  I can introduce myself to strangers.  I can speak publically.  I can disagree with people.  I’ve been looking into some career choices that are a bit unorthodox because Stella would have told me I could do anything I wanted.  Stella was brave and daring and I learned by watching her.

I’m not quite at my goal of “Making a real difference” yet.  This is not something that I’ve gotten to where I want to be on.  We have been overwhelmed with generosity, friendship and love over the last 20 months.  I have attempted to respond to emails, give verbal thanks, to show appreciation and be.  But I think the best way for me to show how much these have meant to me is to give back, and I haven’t gotten there yet.  Those that I’m closest to all seem to be giving back in some way.  Aimee has gone back to work at Camp Oochigeas (camp for kids with cancer), where their entire reason for existence is ensuring children get the most out of camp experience, despite their illness.  Auntie Angie works at the YWCA (see a very cool video she did in one of her programs here: http://www.youtube.com/watch?v=vDCBPKPG-YU         ) where they are dedicated to girls programs meant to empower and educate young women, especially those who are marginalized or at risk.  My sister Heather is a Special Education teacher as well as a respite worker and has spent her life dedicated to teaching those children who have often fallen through the cracks of the education system, giving them a chance to succeed.  Auntie Juju works at the 519 community centre where she runs programs for the homeless and underhoused and advocates for the LGBTQ community.  All these people also volunteer in their spare time.  Me?  I have yet to discover a career that speaks to me.  I have yet to reach out and help others in a concrete way.  I have yet to fulfill the promise I made to myself to make the world better, the way that Stella did.  I still give excuses when people ask me about volunteering that I’m too busy, have two babies at home, etc.  I am not selfless.  If this were a report card, I would get a “Needs Improvement”.

Many of the ways in which I’ve changed are small.  Small changes that have made a big difference.  But here is something else I’ve learned about change.  Not only is it difficult to put into practice, but it can result in losing some relationships, because when you change your values may no longer be in line with the people you were once closest to.  Personally, I can’t stand being in an environment where things I perceive as petty are being discussed at length.  It’s not anyone’s fault, but I just can’t be around it.  As a result, there are certain people or situations that I am no longer interested in being part of.  And it’s hard.  Hard for those I may have hurt by my decision to not spend time with them, and hard for me to accept that I can’t be the person I once was.  But you know what?  I think it’s worth it.  I think it’s worth it to be true to yourself, even when it means having to accept that the person you once were wasn’t good enough.  To change the world, first I will need to continue working on changing myself.

Many people have commented since the blog started about different things they have done because of Stella.  I LOVE hearing that someone has taken their kids on a vacation, even though they won’t remember it, because it’s more important to see them having fun in the moment than wait until they’re old enough to appreciate it.  I LOVE knowing that someone took the time to volunteer at a hospice organization because they were inspired by Stella.  I LOVE seeing Stella’s friends find ways to incorporate her into their lives even though she died.  I LOVE meeting new people and telling them about Stella, or hearing from them about how Stella made a difference to them.

As I drained Sam and Hugo’s bath that night, Sam put his fingers up in the air and wiggled them.  I smiled.  This is his sign for wanting to sing “Twinkle Twinkle” little star.  He and Hugo splashed in the rapidly draining water both laughing as I belted out the song with my “spirit fingers” wildly waving, my heart and head nowhere but in the bathroom with my sons.  Out of tune, but not out of step.

Grief doesn’t just change you, it reveals you.

Sam at the library:

Hugo eating his cracker:

The boys enjoy a big dump of snow:

Remembering When: 


 

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Gracie’s Grace

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Gracie’s Grace:

Gracie was the first baby to be born into our family.  She arrived in the spring of 2008 and dozens and dozens of family members and friends celebrated her birth.  The first niece.  The first grandchild.  The first daughter.  The first child to carry the hopes and dreams of the next generation in her dimpled little fingers.

When I got pregnant with Stella, Gracie was 4 months old.  Aimee and I were thrilled that our child would be so close in age to Gracie.  We didn’t find out the sex of our baby, but both whispered excitedly at night as we dreamed of our future, that it would be amazing if it were a girl so that our daughter and Gracie could be “besties” forever.  Retrospectively, I’m not sure why we felt so sure that only another girl would be best friends with Gracie.  I think it’s likely because Aimee and I are both best friends with our sisters, so it seemed natural that another girl would be the right fit.  When Stella burst into the world, just before Gracie turned 13-months old, one of the first things Aimee and I said to each other was that our little girl was destined to be best friends forever with Gracie. With her doe-like green eyes, dark brown a-symmetrical haircuts, lean frame and olive skin, Gracie was the polar opposite (in looks) to our chubby, porcelain, mop-top daughter.  But somehow, right from the beginning, they just fit together and complemented each other perfectly.

Everything we did was for or with “the girls”.  We bought them matching pyjamas to wear at Christmas.  We took them everywhere together…to watch Tutu skate, to Great Wolf Lodge, to Mexico, to the park, to concerts, to drop-in centres, swimming, cottaging, Maple Syrup-ing, etc. etc.  The girls were inseparable.  Stella became Gracie’s “Stellie” and Stella called Gracie, “Gwacie”.  Gracie was the perfect older cousin.  She was always very gentle with Stella, very caring and protective.  When Stella could only crawl, Gracie would crawl too, even though she was capable of running circles around her.  Stella was always more outgoing and daring than Gracie.  I remember taking them to a petting zoo when Stella was 11 months old and Gracie was days away from turning two.  Gracie shied away from the bleating sheep, while we had to restrain Stella from pushing both her chubby hands through the split-rail fence and into the sheep’s eyes.  Gracie was sweet.  Stella was cheeky.  Gracie was timid.  Stella was bold.  Gracie was athletic.  Stella was clumsy.  Gracie was tender.  Stella was rough. Gracie liked sitting for movies and shows and books.  Stella liked running and throwing and sliding.  They both loved to dance.  They both loved Great Wolf Lodge. They both loved animals and they both thought the other was the funniest person they’d ever met.

The hours after we received Stella’s fatal diagnosis are mostly a blur to me.  I’ve tried hard not to think too much about them because it is too traumatic to relive.  But, one memory which always stands out clearly from the rest, is a vivid picture of Andrea–_Stella’s beloved Auntie Andgie—crouched over on a wooden bench on the 5th floor of Sick Kids Hospital, tears streaming down her face.  I remember her looking up and saying, to no one in particular, “What are we going to do about Gracie?”  Our hearts sunk even lower than they already had.  The despair and sadness swallowed me up whole in that moment.  Not only would Aimee and I have to learn to let our daughter go, but Gracie was going to have to grow up without her “bestie”.  It was nauseating.

With the help of our friend and resident Children’s Grief expert Andrea Warnick, we were all able to speak to Gracie about Stella’s tumor and for the most part we think she understood.  As Stella’s body changed, Gracie changed her playing to accommodate her.  Chasing each other around in circles became playing tea party together when Stella couldn’t walk anymore.  Watching puppet shows became reading books and eventually, when her eyesight and motor skills were fading, watching TV, became just cuddling.

Gracie was present every step of the way as Stella lost her faculties.  She never seemed jealous of the attention Stella got, never got mad about the weekly birthday parties we threw for her, never fought for attention from doting grandparents who admonished her to “be gentle” with Stella.  Gracie sometimes asked questions about Stella’s tumor, and once in awhile expressed her wish that Stella would be able to run again and talk again and “not die”.  But for the most part she just bounded into the house day after day and stretched her imagination to its limit as she found ways to engage with Stella in a much more natural and healthy way than any of the adults ever could.  She was always the caregiver in their relationship, but she also took on some of Stella’s bravery and boundless energy when Stella’s started to wane.  Gracie was at the house just moments after Stella took her last breath.  She spent time with her body after she died, and wailed in raw agony as the black car carrying Stella’s body drove out of our driveway.  But for the most part, Gracie seems to be dealing with Stella’s death in the same way she accepted her physical changes—quietly and openly.

Gracie talks often about Stella.  Saturday she peeked out the window in Stella’s room and said to us, “I’m just checking to see if Stella’s spirit is still playing outside.  She said the backyard is her favourite place”.  Gracie constantly draws pictures of herself with Stella.  In these drawings, Gracie is always twice as big (because she’s the “big” cousin, after all!) and she always puts mounds of curls on top of Stella’s head.

Gracie still comes to the house.  She often goes into Stella’s room and pulls out a piece of her clothing to wear.  The clothes are all too small, but she puts them on regardless and breathes life back into Stella’s toys and spaces, which is like a balm for our bruised souls.

Now it is Sam whom Gracie runs to when she walks into our house.  It is Sam who follows her reverently around, basking in her energy and attention.  It is Sam who she chases and grabs in big hugs.  Now it is Hugo who she looks after.  It is Hugo she protects.  It is Hugo she feeds bottles to, and holds.  Gracie has a different relationship with our boys than with Stella.  But she loves them just as fiercely, and I am confident that despite a 4-year age gap and difference in sex, their relationship will continue to grow and will become vitally important to all of them.   And Xavier is in the mix of cousins too.  When Sam and Xavier were born just hours apart in October of 2011, I said that they were destined to be best friends.  Then Aimee and I began to cry because we remembered another set of cousins who were supposed to grow up as close as siblings as well.  Xavier is a sweet-faced boy who is twice the size of Sam, but a gentle giant who has already shown a love for music and cuddles.  Together, this motley group of children bring laughter into an otherwise weeping house and hope where hopelessness grows much too easily.

I am curious to see the kind of person Gracie will be as the years pass.  It will always be bittersweet to watch her navigate life without Stella.  I know I will always wonder, “what if…” and I know I will always cry when Gracie experiences or accomplishes something that Stella should have been there for. But, in the absence of my own daughter, Gracie is there to wear dresses and listen to my crazy theories on how Cinderella and Sleeping Beauty were sisters.  Gracie is there to alternatively play with, and tease, Sam and Hugo.  Gracie is there to dance in the living room and colour pictures for the fridge.

Just like Stella Joy, Gracie is aptly named.  Her name means “Thanks”, and I am very grateful for her indeed.

This is a video made by our friend Chris Yap.  It was shown at Stella’s Funeral (aka Stellabration of Life aka Stella’s Celebration of Love).  I have never gotten through this video without bawling, because I think it really highlights how much love Stella had in her life.  And it shows clearly the adoration of Gracie, and her best friend/cousin:

Some of the drawings Gracie has done recently of her and “Stellie”:

The boys:


 

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Hearing Through The Quiet

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Hearing Yourself in the Quiet

 

This afternoon I am sitting in the back of my house, in Stella’s room.  Stella’s room is dark until about 4:30 in the afternoon, when the sun starts to stream in and casts dozens of rainbows on the pale green walls thanks to a “Rainbow Maker” that Tutu bought for her last year.

 

I often find myself drawn to her room when the day is quiet.  Hugo is sleeping and everyone else is away at work or school/daycare.  Even though Sam has been sleeping in this room for the last 8 months, we still call it “Stella’s” room and it is still full of all her things.  The books on the shelf are the ones I used to sit on the floor and read to her…or, more accurately, that she would pull off the shelf and hurl across the room while giggling loudly.  The stuffed animals in the corner are the ones she used to drag around by their ears, and toss down the slide at the park.   The drawers are still full of her clothes (Sam’s are kept in Hugo’s room).  Some of the art has changed.  It says “SAM” above the change table, but there are still black marks on the wall behind his name from when Stella used to kick the old picture that hung there as I attempted to change her diaper.  The far wall has one of the posters from her Funeral on it. Her smiling face looks down on me each night as I tuck Sam into Stella’s old crib.  Her pink baseball cap sits in one corner, high up, where we strategically placed it after she died.

 

It’s unbelievably quiet here nowadays.  The large community that rallied around us when Stella was sick and when she died has been disbanded.  Our family and friends are still here for us, just not in such a physically present way.  But there are many people who were staples in our home that have vanished.  Because after Stella died, their work with us was done.  There was Chris, Stella’s nurse who came to our house every week and always called Stella “Boo” as she deftly went about her work, often sharing stories of her own two daughters and their comings and goings.  There were the palliative care Doctors, Kevin and Brar, who would sit on our couch, listen to our greatest fears, assure and reassure us continuously, prescribe medicine for Stella and share limitless comforting words with us.  Their patience as Aimee and I pestered them with questions about “when” and “how” seemed endless.  There was the local pharmacist, Barry, who got to know us, and Stella’s ever-changing prescriptions, with impressive accuracy.  There was our awesome volunteer music therapist, Christina, who filled our home with beautiful music and generosity.  There was Cath (journalist) and Tara (photographer) who intimately documented Stella’s last year with us, visiting us and asking questions about how we were feeling, how we were managing, how we were living; snapping photographs capturing both the ordinary and extraordinary things we were doing.  At one point there was a co-worker of mine who was stopping by regularly, bringing gifts of fun socks and funny stories, but she disappeared sometime in the summer. There were the neighbours whose son died just 11 days before Stella.  We clung to each other during the last couple months of our children’s lives, crying, hearts breaking, but haven’t been in contact since late October.  There were energetic morning and afternoon visits from Auntie Andgie and Auntie Heather that have slowly petered off.   The cupcakes from Christie, morning Timbits from Poppa, homemade applesauce from neighbor Ken…it’s all disappeared.  Or maybe disappeared isn’t the right word, but every interaction is different now.  Less intense.  Less purposeful.

 

Now the phone doesn’t ring, the door stays shut and it’s mostly just Hugo and I in the house all day.  It’s not necessarily a terrible thing to be creating a new semblance of “normal”, it’s just different.  Quiet.  So quiet that I can often hear the birds chirping outside from the living room couch.  Even though Stella hasn’t been out to feed them this winter, they still loyally sing away in our tree.  Now that it’s just me off on leave by myself, I’m trying to create a pattern to my days.  But the thing about grief is that there is very little predictability

 

I signed up for a class at Glendon on Thursday evenings.  I’m the oldest in the class (probably by a decade), which became painfully obvious when I pulled out a notepad and pen while everyone else booted up their iPad.  I’m completely anonymous in class.  Nobody there has ever laid eyes on me before.  It’s both refreshing and nerve-wracking.  Ditto for the “Mom and Baby Groove” dance class I’m taking on Friday mornings in the West End of the city.  I went to the first class last week and quickly realized that I was, once again, the social misfit I remembered from my youth.  I was a white-running-shoes and black-leggings third-time mom in a room full of high-top sneakered, fluorescent coloured, fedora-wearing first time moms.  I was both envious and resentful of their innocence, speaking to each other with great enthusiasm about how little Cole learned how to roll over, baby Finn’s perceived love of the colour chartreuse, a husbands eye-rolling worthy attempt to play with baby James and watch the hockey game.  I had nothing to add to the conversations, so stayed awkwardly silent, pretending to study my iPhone with great interest.

 

Then yesterday, the journalist Cath came over just to hang out with me.  I was surprised after spending so much time with her how jittery I was about it.  But I was nervous because there was nobody here but me.  No other people to take the attention off me, no other person to depend on for conversation topics, no opportunity to discreetly excuse myself to another room if I began to feel too awkward.  No Stella to talk to, no Aimee to bounce conversations off of.  I was completely insecure.  Scared that I wouldn’t be stimulating enough or keep up conversation that was interesting or intelligent enough.

 

I’ve realized that along with the intense grieving that goes along with losing Stella, I’m also needing to face my biggest fears again of not belonging anywhere specific. I’ve always been a bit of an “odd duck” as my Nana used to call me, but in some ways Stella’s illness was a shield to me.  As one friend joked a couple of weeks ago, “People have to be kind to you.  They’re like— ‘hey, be nice to her, her kid died’, there’s a lot of power in that”.  It’s funny, but also true in a way.  Most people who know about Stella probably cut Aimee and I a bit more slack when it comes to relationships and social cues.  But now, in the “new normal”, not everyone knows about Stella.  I’m just another mom in a dance class, another student in a class, another person out on a walk with a friend.  And I feel awkward because I don’t quite fit in this new role, I’m not entirely sure where the person I’m morphing into belongs.

 

Since I gave birth to Hugo five months ago, none of my clothing fits.  I’m still carrying around some extra weight.  Since Stella died, my life doesn’t fit anymore.  Physically, mentally and emotionally I’ve got some work to do to make it all fit again.

 

Stella was so good at adapting.  Within a period of 16 months she had every single physical part of her ruthlessly stripped away.  And still she laughed.  Still she lived.  Despite the fact she was only three years old, she intuitively knew that trying to be someone else is a waste of who you really are.

 

So for now, cuddled up in Stella’s room, surrounded by her things, I guess I have to accept that I’m in an “in-between” place.  I am still learning how to sit back and just let the rainbows dance on my face in this quiet room.  I am staying present in this peaceful moment, letting all my insecurities and worries melt away, and allowing my mind to drift back to when these walls had the laughter of pure, curly-haired joy dancing in their shadows.  My God, I miss that giggle.

Sam and Xavier having a bath…perhaps Sam has a bit of Stella in him after all…:

Sam:

Nanny and GrandPa read to the boys:


Stella about two years ago…she was such a character!  Blurry because that’s what parenting her was like—she was always moving so darn fast.


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Aimee, Mishi, Stella, Sam AND…

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Aimee, Mishi, Stella and Sam are proud to announce the birth of…
Hugo Charles Bruner-Methven
 

Hugo was born at Toronto East General Hospital on August 2, 2012 at 9:45pm.  He weighed 8lbs 4oz, 21.5 inches long.
The birth was amazing and meaningful and quiet (ok…well, except a little screaming on my part :o)    ), and expertly handled with beauty and dignity by our incredible midwife Christie K. who has been superb all throughout this jouney and her fantastoc backup, Sarilyn Z.
We got home in the wee hours of August 3rd and Stella and Sam were introduced to their new brother this morning.  Sam was frankly very uninterested, and Stella looked a bit horrified when we first brought him to her, but she warmed up later in the day after some good one on one attention from Juju and Auntie Heather and now smiles and laughs whenever he comes close.
Everyone is recovering well from the excitement.  We have had lots of help from our families and we are all doing great!
About the name:  In brief, “Hugo” was the name Aimee and I had selected for Sam before Stella decided to change it in Aimee’s seventh month of pregnancy.  Up until then, Stella had called the baby “Hugo”, so she was familiar with the name.  When we found out we were having another boy, Aimee and I (with the help of some forum readers) put together a list of potential names and asked Stella to help us out by sticking her tongue out when we got to a name she liked.  Well…she wasn’t being very cooperative with our requests, and finally one day a couple of months ago as we were going through names, we saw her trying to mouth something to us.  After a long and frustrating guessing game, we realized she was saying “Hugo”.  She had remembered the name and then…it was a done deal!
The name means “mind, body, spirit” which we think is lovely and one baby name book even had the meaning listed as “spirited”, which is the word we have always used to describe Stella.
The middle name “Charles” was selected by Mishi’s brother Tristan (he is 16).  Tristan is an incredible young man, who at the age of 16 shows a love for Stella and his nephews that is way beyond his years.  Tristan has struggled with Stella’s diagnosis the same way we all have, but has found inner strength and the ability to find joy in our difficult circumstances and continue his strong bond with Stella, something we are endlessly proud of.  We asked him to select Hugo’s middle name as a testament to how important he is to us.  “Charles” was the middle name of his and Mishi and Auntie Heather’s maternal Grand-Father.
So, in the next little while we will try to find our footing with the addition of our newest family member and keep you updated on how everyone is doing when we can!
Much love from Stella and the newest Bruner-Methven!!!
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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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