Hug

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The Hug

Stella has been gone for just over four months now.  Already it seems like a lifetime ago that I sat with her on the couch, holding her body close to mine and trying to memorize the veins on her eyelids as she napped contentedly on my lap.  The days of visitors and noise and food are long gone.  It’s mostly just us now.  We’ve settled into a quiet and “normal” existence.  Aimee goes to work five days a week.  I get up and we all get breakfast.  Aimee leaves and then I play with the boys and get them dressed and ready for the day.  Sam goes to daycare and the I’m home with Hugo all day.  Aimee comes home from work and we eat dinner and give the kids baths and put them to bed.  Then Aimee and I talk about our days while we tidy up the house and negotiate what will go on the family calendar for the next few days.  We watch a bit of tv and then collapse into bed.  Wake up the next day and repeat.  Time is marching forward and though Stella is never far from our minds, she is no longer a part of our daily routines.  No more meds, no more visits from Doctors, no more drawn-out discussions on quality of life versus quantity of life.  The hole she has left behind is still big and deep and raw, but we are being propelled forward by the momentum of time passing.

The boys are growing quickly and Sam is entering an age which is slightly more challenging than that of “baby”.  At 16 months old, he is quickly developing into a toddler and though that comes with much joy at seeing him learn to speak and come into his own as a person, it also means regular battles of wills and a constant need for attention as furniture is climbed, buttons pressed and drawers opened and closed at alarming speed.

I know that I’ve blogged quite a bit about the difficulties I had parenting Stella who was described as “spirited”, “energetic” and a “force to be reckoned with” by other people— all these terms just synonyms for “challenging”.  So, taking with me the very valuable lessons I learned from her life and death, I have been trying to be more aware of my own strengths and weaknesses and the things that trigger me and cause me to lose my cool.  I start off every single day by taking a moment to remember my daughter.  To picture her face flashing me a brilliant smile, to remember the out of tune cackle of her laugh, to feel her warm hand clutching mine.  It’s my own version of a prayer.  I ask for patience, for the ability to remember what is important in life, for a day where I appreciate the small blessings that are around each day.  I remember what I am grateful for and I promise not to be grumpy or roll my eyes at the fact that it is pitch black outside and all the normal people are still sleeping while my children are calling for me.  I do all these things to remind myself all that I have to be grateful for, and to help myself get ready for the day.  It’s important for me because I am not, nor have I ever been a “natural mother”.  Just to define what I mean by this, I would say a natural mother (or father or caregiver), is someone who is able to handle the challenges of parenting with ease, confidence and a skill that is second nature to them.  These people exist, I know some of them personally.  Unlike those with a natural knack and parenting instinct, I’m constantly fighting an internal battle with myself to make a conscious effort to focus and enjoy children.  I am not a “Camp Counselor” type who can do different voices for each piece of clothing that needs to be put on, make up songs about broccoli on the spot and find a million fun and imaginative ways to make toothbrushing a great pirate adventure.  I say what I mean, won’t play it if I don’t think it’s fun and instead of feeling superior or proud, I openly mourn the fact that none of the kids I have ever parented are the least bit interested in television.

I love my children.  Especially after suffering the loss of one, I wake up everyday grateful for another morning with my active and growing sons.  But many times the joy I feel at being around them goes no further than my face.  I still find it difficult to throw myself wholeheartedly into parenting when there are SO many other things I wish I had time to do.  Read a book?  Yeah right.  Take a dance class one evening a week? Not likely.  Sleep past 5:30am?  Not with my offspring.  I thought it would be different.  I thought that because of the intense and heartbreaking experience of having Stella die in the way she would, that parenting would suddenly all make sense and come easily to me.  But it hasn’t.  I still have to take deep breaths on a daily basis, and though I’m much, much better at letting go of the small stuff and much, much better at letting my kids just be themselves and loving them for who they are, I still don’t always feel fulfilled and joyous with all my parenting duties.

Aimee is an extremely involved parent as well and we split the kid duties 50/50.  But she is back at work and so when she gets up in the morning, she needs to shower, pack her lunch and get out the door.  The kids get up sometime before 6am.  So in the mornings, until Sam leaves for daycare around 9:30am, I have them both.  Often these are my favourite times.  Hugo is exceptionally smiley and easy-going.  Sam is the most affectionate child I have ever come across, peppering my face with sweet kisses, hugging his brother, cooing at all the pictures of animals and babies in his picture books.  But he is also 16 months old, mobile, learning, exploring and climbing everything and anything. As a result,  Sam is now sometimes hard to manage, especially when I am balancing a 6-month old on one hip.

So yesterday morning, after managing to get both kids fed (not myself, but both kids fed is a victory in itself…I can wait), I had to pee.  For many people this is not something you need to think too hard about, but it’s a bit of a process for me.  I can’t leave the kids alone either together or apart while I accomplish this mundane but important task, so I need to pick up Hugo and cajole Sam into joining me in the bathroom.  While I was on the toilet balancing Hugo on my lap, Sam decided to open the bottom of the vanity and began emptying out various toiletries he found.  QTips, moisturizer, guest toothbrushes, tampons.  That was all fine until he stumbled across some hair elastics that he began shoving in his mouth.  Choking Alert my brain immediately processed. “Sam,” I coaxed him holding one arm out, “give those to Mama”.  Sam flashed me a mega watt grin and moved just out of my reach.  At that moment Hugo decided he didn’t want to be on my lap anymore and began arching his back and crying, trying desperately to wiggle out of my arms.  I put Hugo down and lunged for Sam, pulling my pants up with one hand.  I got to Sam, but both my sudden movements and my ripping the hair elastics out of his hand scared him so he began to wail loudly.  This upset Hugo who also began to cry.  As I washed my hands and the two children screamed around me (just so you know our bathroom is about the size of a clothes closet so there isn’t much space to move around), I realized one of them needed a diaper change.  After completing the tried, tested and true technique of butt sniffing, I figured out it was Hugo.  I keep diapers in the bathroom, so since we were all there I kneeled down to change his diaper.  Hugo stopped crying and as I belted out “Twinkle Twinkle” as loud as I could, Sam eventually stopped as well.  Success.  As I got Hugo’s diaper undone, Sam ran for the toilet and tried to open the lid.  I used one leg to slam it down and said, “Sam, No!”.  Sam laughed, moved away from the toilet and beelined for the garbage can which he quickly opened and began emptying out.  “Sam!” I said leaning over and shutting it with one hand.  Back to the toilet he ran, back my foot went to keep the lid down.  Meanwhile, Hugo was twisting out of my grip and managed to roll onto his stomach, smearing poo all over the bathroom rug.  “Aargh!” I exclaimed trying to push him back over.  He wouldn’t go and began commando crawling towards the base of the toilet, smearing poo on the ground as he dragged his naked body across the floor.  Sam ran over and began spreading his brother’s feces with his hands.  “Sam, No!” I yanked him away and pulling off a large chunk of toilet paper, wiped his hands and placed him in the corner using my body to block him in and he pounded my back.  I grabbed Hugo by the ankles and quickly changed his diaper while he basically stood on his head.  I had one foot up keeping the toilet seat down and the other foot on the lid of the garbage.  Sam was climbing on my back and crying into my ear.  By the time all was said and done, both kids were crying.  I was sweaty and covered in snot and poo and so was the bathroom.

This entire scenario was only 3 minutes long.  But when you have almost 4 hours to kill in the mornings with your two kids something like this can break you.

As it was all happening I kept trying to find my inner zen.  I kept trying to be grateful that my kids were healthy and active enough to be doing these things.  To remember that Sam was growing quickly and learning new things.  But with cacophony of baby cries, the smell of poo and the impending feeling of failure make that a hard thing to keep in mind.  All I felt was stressed and overwhelmed.  I was frustrated with both boys, but mostly with myself for not being able to “do” parenting.  I suddenly had an overwhelming urge to burst into tears.  I just wanted to sit down and drink a hot tea by myself.  But at that point I was more likely to get accepted into Harvard for Law than accomplish that.

Outside the bathroom, I sat cross legged on the floor of Stella/Sam’s room and watched Sam pull all the books off his shelf while Hugo crawled around (towards the radiator of course— why is it when there’s a room full of toys the kids always gravitate towards sockets, poisons or electrical equipment?).  I felt defeated.  I had promised myself a million times over that I was going to enjoy parenting these two boys.  I remembered sitting in this room with Stella so many mornings and watching her do the same things as Sam and Hugo were doing.  I remember her tantruming because I wouldn’t let her rip all the pages out of the books.  I remember her hitting me over the head with her toy piano and then laughing— just to see my reaction.  I remember epic fights over wanting to wear 7 pairs of underwear to daycare, on the outside of her pants.  Was I any different now?  Could I have managed it better with all the lessons and knowledge her life and death had given me?  I think so, but at that moment, I just wasn’t sure.

Sam ran into Hugo’s room and I could hear the crashing of something being pulled of a shelf.  When he returned, he was holding part of a name puzzle we have that spells out Hugo’s name.  He proudly handed it to me.  “Thank-you Sam” I said accepting it.  He held his hands out and I gave it back to him.  Back and forth he came with part of the puzzle, about six times, handing it to me and then asking for it back.  Finally, instead of handing it to me he placed it on the ground in front of where I was sitting and jabbed at it with his finger.  “HUG”.  It was the first three letters of Hugo’s name, but they suddenly meant so much more to me when presented this way, at this time.  I looked up at Stella’s picture and said a silent, “Thank-you, Stella”.  Hug.  Hug.  I hugged Sam.  I hugged Hugo.  I closed my eyes and remembered hugging Stella, and remembered how hard I cried the day I realized her body had taken away her ability to give hugs to people any longer.  I wrapped my arms around myself and gave a little squeeze.

I realized it was okay.  Just because Stella died doesn’t mean I need to love every single moment of being a parent.  It’s hard work.  It was hard work with Stella and it will be hard work with the boys.  But it’s my choice, my pleasure, my honour to do it.  Losing a child has made me appreciate the things I get to do with the kids so much more.  It’s made me better because I can focus on them and enjoy the moment instead of dreaming of when it will “get easier…better…more fun”.  Now is all we’re promised, so even if now consists of having poo under my nails and cheerios stuck to my shoulder, I’m here for all of it- good and bad.

But today was important because it reminded me of something else.  When Stella was completely out of control— like rolling on the ground, screaming and flailing her arms I would sometimes just pick her up and hold her until she calmed down.  It usually worked and she would end up hiccupping and sniffling in my arms.  She just needed a hug.  Just like I needed one yesterday morning.

Hug.

The puzzle Sam brought to me:


Xavier and Sam:

Hugo:


Sharing Fries with Uncle Tristan:

Stella at age two dying Easter Eggs…just before she started smashing them with her hands:


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A New Coat of Paint

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A New Coat of Paint

 

 

One of the things I wasn’t prepared for with Stella’s death was how difficult it would be to continue to live in the physical space where she once was.  Aimee and I had been warned by our psychiatrist that generally people fall into two camps: those who are comforted by being in the place their child lived and died, and those that can’t tolerate it and need to get as far away as possible.  I have been in contact with many bereaved parents since Stella was diagnosed and there are some that have moved from their old homes, old neighbourhoods. There is even one person who left the country and I’ve heard of another who even moved to a new continent.

 

The house that Aimee and I live in is special to us.  It is the first and only one we’ve ever owned.  It is located about 12 feet from the home I grew up in.  My dad owns the house right across the street from us and my mom’s backyard runs into ours.  Aimee’s dad is a 10 minute drive, her mom is a 15 minute drive and Andge and Julia are about 20 minutes away.  My brother lives with my mom and my sister lives with my dad, so we are literally surrounded by family.  Almost all of our friends live within a 5 minute drive or less from us.  There are good schools nearby, lots of parks, libraries, restaurants, grocery stores.  It’s a lovely neighbourhood.  We bought this house 9 years ago and it was a total dump, but we saw only the beauty and potential of it when we moved in.  We’ve spent the last almost decade turning it into our home.  Saving up money and fixing it up one room at a time.

 

The sink in the kitchen is where I first told Aimee we were pregnant with Stella.  I have it on video and she is crying and squealing with excitement as the tap runs, momentarily forgotten, in the background.  The same sink that was surrounded by dripping white candles the night that Stella died and Aimee carried her body, wrapped in a soft white blanket, out to the waiting car where she disappeared from us forever.

 

The dining room table is where we laid out all the baby things we got for Christmas 2009.  We stood at the table staring at everything for a long time, in disbelief that four months later we would be using all those things for our baby.  We didn’t know the difference between the teether and the soother on the table, but we were determined to give our child the best of everything.

 

The washroom got renovated just two weeks before Stella was due.  For three days we lived with no toilet.  In the middle of the night, hugely pregnant, I would have to choose either going down to the basement and using our tenants bathroom (awkward to say the least!), or stepping outside into the backyard and peeing on the grass like a dog.  Neither was ideal, but both memorable.

 

Our bedroom is where I labored with Stella, writhing and screaming thinking I was being ripped in half.  Aimee and I now laugh at how I insisted the midwife come and check me because I was sure it must be time to push…and I was only 1cm dialated when she showed up!  The bedroom is also where Stella died.  Right in the middle of the bed where Aimee and I sleep every night. Wearing her purple t-shirt and bike shorts, my beautiful 3-year old daughter died in our arms in the same room I once labored her into life.  The walls have been decorated with screams of pain and anguish twice now.

 

Stella’s room.  Where Aimee and I lovingly painted the walls with special (read: expensive) all-natural eco-paint.  Where we put together all the furniture ourselves, carefully folded all the newborn clothes and put them into the dresser.  Where we sang our baby to sleep, read books, laughed and dreamed.  Where Stella would wake up in the morning and hold her arms up to us, ready to be lifted out and begin her day.  The place I fought most with her.  Attempting to put her to bed.  To get her dressed.  To convince her to sit on my lap for just thirty seconds so I could tie her shoes.  To force her to pick up the books she yanked off the shelf with glee. Many tears of frustration and anger were shed in that room— for both of us.  But there were also times when the moon and stars would peek through the windows and she would giggle and try to grab my nose as I sang Carly Simon songs softly to her, both of us, momentarily, enjoying the safety and warmth of just being together.

 

The dining room floor where Stella took her first steps.  It was like a crooked little straight legged run straight into Uncle Tristan’s arms.  Where Gracie and Stella played for hours, chasing each other in circles and collapsing into a pile of giggling arms and legs.

 

And the couch.  So many memories on that couch.  We lived on our couch for 16 months, day in and day out (in case you’ve forgotten, here is a blog entry from  October 2011, all about the damn couch):

http://www.stellabrunermethven.com/2011/10/the-couch/

That couch was our bed, playroom, kitchen, office and more during the months Stella was living with DIPG.

 

This house is bursting with memories for us.  Each creak in the wooden floor is like a fresh cut on my open wounds.  I can see Stella so clearly in every corner of every room.  Dancing, laughing, spinning, living.  It’s excrutiating even when it’s comforting.  But we live here.  Aimee and I decided a few months ago that we weren’t willing or able to sell this house.  It hasn’t been easy to stay here.  It’s not just the house, it’s the whole neighbourhood.  The playgrounds we took Stella to, the school she should have gone to, the library we walked to, the shops we frequented.  Each sphere that we move into without her is a stark reminder of everything we’ve lost.  It’s not always easy, but we are dedicated to our lives here and we want to stay.  So, we decided that instead of moving, we would give our house a makeover.  Nothing structural, no “home improvements”, just paint and furniture placement.

 

For the last few weeks, we have had the entire house repainted.  We moved around the furniture.  We couldn’t bring ourselves to get rid of Stella’s couch, so we kept it but got it recovered in a grey fabric.  We changed around all the art and bought a couple additional pieces on Etsy.  We printed out dozens of family photos and created a Family Photo wall.  We finally made Stella’s room into Sam’s room and Sam’s room into Hugo’s room (It’s only a 3-bedroom bungalow).

 

Now it’s done.  Everything looks fresh and different.  It’s a new coat of paint for our new lives.  The life where Stella is dead and we are living as the parents of Hugo and Sam.  It’s beautiful.  I love every room.  But if I thought it would heal something deeper inside me, it hasn’t.

 

Stella is missing.  Since the day Stella died, our house has felt different.  Even our friend Christie said it when she popped by yesterday.  When Stella was here, both pre and post DIPG, the house just reverberated with life.  It was loud and chaotic and busy.  Especially after Stella was diagnosed, it was always bursting with people and food and conversation.  We all lived loudly for Stella because she reacted to pantomime-style humour.  We marched all over the house singing “blam blam” when it was time for meds.  We had tea parties with our puppets Fred and Carrot on the couch.  We painted our nails.  We chortled about bodily functions and let Stella pretend to hit us all because it made her laugh.  The TV constantly blared episodes of Dora, Barney, Olivia, Sesame Street.  Family and friends came to visit everyday, at all times of the day.  We ate constantly.  The kettle was always cheerfully whistling as we drank gallons of tea.  It was energetic, social, loud.  As Dickens wrote, “It was the best of times, it was the worst of times”.

 

And now, sitting in our beautiful home, it all feels so empty.  Sam and Hugo are wonderful boys.  We have a blast with them and I am hopeful that in time we will create hundreds of new, happy family memories together, accepting that our lives will forever be marked by Stella and all she brought to us.  No matter how many times we paint over the walls or move the furniture around, her laughter will always echo off these walls and the memories we have here will always seep out with the turn of a tap or the lighting of a candle.

 

Same walls, even though they’ve changed colour several times.  Same floors, even though we put new hardwood over the old hardwood a few years ago.  Same windows, even though they were upgraded to be more “energy efficient” at some point.  Same layout.  Same creaky spots.  Same front door. The same but different.  Kind of like Stella when cancer started to change her. Lots was different on the outside, but she remained the same on the inside…right to the very end when all she could do independently was stick her tongue out, she still managed to convey joy and humour in all she did.

 

And even though change is hard, I have been staring at a gorgeous encaustic rendering of Stella that was a gift from friends, the one where a butterfly had landed on her cheek, and I remember that, “if nothing changed, there’d be no butterflies”.  And we all know that butterflies symbolize transition, time, celebration and soul.

The butterfly counts not months but moments, and has time enough.  ~Rabindranath Tagore

 

Xavier and Sam:

Gracie and Sam attending a concert on Family Day:


Stella’s room before:


Stella/Sam’s room after:

Stella, March 2011:


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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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The Long Winter

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The Long Winter

 

I don’t know where you’re from, but here in Canada around mid-February, winter starts to feel pretty long.

 

It’s cold and grey and the snow is hard and packed down into grey patches of dirty ice that crunch under winter boots that make your feet sweat.  You trudge and slide, cold wind biting at your cheeks and seeping down your shirt.  My kids hate wearing hats and mittens, and getting ready to go anywhere is a marathon of will and patience.  The sky is grey almost everyday.  Slate grey. Silver grey. Ash grey. Dusty grey.  Asphalt grey.  It doesn’t matter how many fancy names you give it, it’s dull looking and depressing.

 

This winter has felt especially long for me.  Aimee went back to work just over a month ago, leaving Hugo and I alone in the house for the most part.  It’s easy to get vacuumed up in sadness when you’re stuck inside the house with a 6-month old who’s cute, but not very adept at conversation.  I could go out, but I don’t feel like it.  I don’t feel like doing very much at all.

 

Our resident grief expert/friend An told me that the 3-4 month mark is often the hardest time for people who are grieving.  She also said January-February is a particularly difficult time because it’s cold and dark outside.  Oh, and and transitions (like Aimee going back to work), so it’s not too surprising that things are hard right now.  I haven’t felt like doing anything much these last couple of weeks.  And when I force myself to go out, I always feel exhausted for days by the effort.  I read recently that, “Grief is not unlike being lost out at sea; waves of different emotions continuously crash over you and you feel as if the current will sweep you out even farther from what you once thought was normal”.  This really resonated with me as grief has been overwhelming with its indecisiveness.  Sometimes I drown in it, sometimes I can swim and sometimes I am able to climb out and dive into life with power.

 

Before Stella died I used to troll on other blogs and websites belonging to parents of kids who had died of DIPG.  I would read the entries immediately before and after the death of the child over and over again.  I wanted to know.  I wanted to know how the different children had died…so I could be better prepared and know when/how it was coming.  Then I wanted to reassure myself that even after their child died, the parents/caregivers were still living and had made it through.

 

What I found was that Stella’s death was not like the ones I had read about.  Despite all my best “preparations”, I was woefully unprepared for watching my daughter physically rot away in front of me, her extremities turning blue one at a time as oxygen got squeezed out of her, her face almost unrecognizably gaunt, bruises on her ears, her eyes half opened and covered with a red film.  The other blogs didn’t tell me that was what it was going to look like. But retrospectively, I shouldn’t have expected to be prepared for my daughter’s death.  It’s not something you can ever prepare for and it’s not something someone else can tell you about or make easier for you.

 

I noticed on these other blogs that after the children die, the parents usually only update intermittently (for the most part).  As a person searching for answers, this used to frustrate me.  But now that I’m on the other side, I understand somewhat.  How many times can you write that your heart and soul are shattered, that you miss your child so much you can barely breathe, that the pain is so raw and real it burns like a thousand bee stings?  After your child dies there isn’t as much to write because you are exhausted just forcing yourself to get up in the morning. But I promised myself I would keep writing.  For myself.  For Stella.  For those who have supported us and followed our journey.  For anyone who comes after me that wants to know if and how we’re still standing.

 

So here we are.  February.  108 days since Stella died.  In that time we’ve had one public and one private Stellabration for her.  We’ve celebrated Hallowe’en, Thanksgiving, Christmas and New Year’s.  Heather, Poppa, Tristan, Nanny and Aimee celebrated Birthday’s.  Aimee went back to work.  I started taking a class at school.  Hugo has learned how to scoot around the house, eat solids and grew two front teeth.  Sam runs and climbs, says “car”, “cracker”, “bubba”, “mama”, “bird”, “DaBa” (GrandPa), “Pada” (Poppa) and “Della” (Stella).  I’ve woken up 108 mornings without being able to see her smile, touch her curls, feel her fingers curl into mine.  I’ve gone to sleep 108 nights wishing with all my heart to visit with her in my dreams.  Sam has given her picture in the living room a kiss 108 times before eating his breakfast.

 

We are in a new rhythm now.  On the weekdays, Aimee and I get up with the kids and Poppa comes over and takes Sam for an hour to DeeDee’s house for breakfast while I deal with Hugo and Aimee gets ready for work.  Sam comes home around 8am and then I play with Sam and Hugo until about 9:30am when Sam leaves for daycare. We read stories and get dressed and snack.  It’s a lovely little time.  After Sam leaves, it’s just Hugo and I, or sometimes Daniel.  We fill our days by visiting friends, taking walks to the grocery store and/or drug store, organizing drawers, reading, singing, playing, chores, etc. etc.  When Sam and Aimee get home we have dinner, then we give both the boys a bath and usually by 9pm we’re settled on the couch watching TV and talking about our days.  It’s a quiet existence.  It looks normal, but it’s not because we constantly feel as though there is a huge hole in our hearts and our lives.

 

Time, so far, has not been kind.  Stella’s presence is missed more and more each day.  The heartache doesn’t go away, it just intensifies.  I have been lucky enough to get emails from a handful of grieving mothers, who assure me that the pain lessens eventually.  But not yet.  Not 108 days in.

 

When Stella was alive and Aimee and I needed to find light we would just look into her eyes, or listen for her laugh.  But now, 108 days in, we need to find alternative ways to ground ourselves.  Last Friday night I was lucky enough to be a special guest at the Meagan’s Walk Gala in Toronto.  Meagan’s Walk is a brain tumor fundraising event that was started 12 years ago by the parents of a little girl who died just after her fifth birthday, of a DIPG tumor.  The annual Mother’s Day walk and gala has raised over $3 million dollars since it began.  Incredible!  http://www.meaganswalk.com

Sitting at a fancy table next to my friend Cath, wearing heels and makeup for the first time in over two years, I felt awkward and a bit out of place.  Then Meagan’s mom, Denise, came over to speak with me and the first thing she said is, “You don’t have to say anything to me because I know without you telling me anything what you’ve been through.  And I’m sorry”.  It was nice to know that sprinkled amongst the Doctors and socialites there were also volunteers, grieving family members and friends.  At our table there was a group of absolutely lovely people who genuinely seemed to care about Stella and Meagan and other children suffering from DIPG and other types of brain tumors.  It was a small glimpse of hope that perhaps my sadness could be turned into something more productive in the future.

 

The very next day, our family and friends headed to Kimbourne Drop-In Centre.  This is a place that Stella frequented her entire life.  I have so many memories of her there.  I first brought her there with Omo and Arin when she was 6 months old, she was also there weeks before she died, and countless times in between.  She used to paint there, run there, climb there, have time-outs on the stairs there, eat her snacks there and she even celebrated her first birthday there.  Thanks to a lovely donation from Aimee’s camp friends (go GV girls!), there was a new couch that the staff had added books and cozy pieces to and dubbed in “Stella’s Cuddling Corner”.  It’s a very sweet tribute to our girl and a small token of thanks to a program that means so much to us.  After the “official” part of the program, Heather ushered a group of Stella’s friends over to the couch for a photo opportunity.  It was lovely to see all these little people gathered around the couch, but my heart also broke as I wondered for the millionth time why Stella wasn’t there sitting amongst her friends.  So I focused instead on feeling grateful for our boys, and our amazing community.

 

The next day, Auntie Heather and Aimee and I took all three of our boys (Xavier, Sam and Hugo) to Stella’s beloved Riverdale Farm.  As the older boys ran around gazing in awe and wonderment at the animals and Hugo surveyed everything from his perch in the stroller, I had a sense of peace and faith in the future.  Today it may be grey and dull outside, but soon Spring will come.  Spring the season of new beginnings and renewal.  The season that Stella was born.  As I’ve been writing this, the grey clouds outside have lifted slightly and there is a faint blue-ish tinge to the sky.

 

A promise of the colours yet to come.

 

 

Sam and Hugo clowning around:


Stella’s friends celebrate the new couch at Kimbourne Drop – In Centre:


Stella at Kimbourne Drop In Centre with her friends Arin and Flora, Feb 2011:

Sam and Xavier visit Stella’s favourite animal (pigs) at Riverdale Farm:


 

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