Searching for Stella

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Well, here I am sitting on the itchy, crumb-covered carpet at Great Wolf Lodge while the kids colour Power Rangers pictures next to me and Aimee watches CNN—hanging on to every detail of the upcoming US election (sigh).  It’s a slightly different scene every year, but the cast of characters never changes.  Me, Aimee, Gracie, Sam, Hugo, Auntie Angie (and, until this year, Juju— but she had to work) show up at the doors of Great Wolf Lodge to both celebrate and grieve the death of our beloved Stella.  As soon as the big glass doors swing open and we are greeted by the animatronic howls of wolves, we all feel a sense of deep sadness, as well as comfort.  Even though the outside world continues to change and move, Great Wolf Lodge stays the same.  We have been coming here for 7 years now and they serve the same bread pudding in the restaurant, tell the same jokes at the end of kids story time, sell the same t-shirts in the giftshop and have the same wallpaper on all the bathrooms in the entire lodge.  It’s incredibly comforting.  When you come here it doesn’t matter what time it is, what day, or what season, because inside it always smells, looks and feels the same.  Because Sam’s birthday is two days before Stella’s death anniversary, we are always here for his birthday.  He thinks that’s why we come.  We definitely celebrate his birthday while we are here, but it is also our escape from the sadness of “that” day— October 22, 2012.  We immerse ourselves in the chaos of noise, sugar and temper tantrums and wait for the day to pass.  All the while spending insane amounts of money on sparkly temporary tattoos, oversized cookies and cheap souvenirs.

As soon as Aimee and I start to feel the first hint of autumn in the air, we steel ourselves for that feeling of intense sadness that comes as Stella’s death anniversary approaches. It’s almost a relief when it’s over because the build up is so painful.  As each date passes, we are forced to relive those horrible last days which, although they were peaceful and full of love, were excruciating to endure.  October 1 was the last day we took Stella out for ice cream.  October 9th was the last day Stella opened her eyes and really responded to us.  October 11 was the day we thought she was going to die as she gasped for air and shuddered in our arms.  October 20th was Sam’s first birthday, and October 21st was Xavier’s.  Stella lay dying in our bed, her bony chest slowly rising and falling and we sang “Happy Birthday” to the little kids and held lit cupcakes in front of her motionless body.  The tears, which don’t come as often anymore, come easily around these dates.  I remember we went to the Funeral Home on Hallowe’en Eve to prepare for her funeral, and then the actually funeral was on November 1.  The following week we had her Stellabration at Riverdale Park.  The details of all those days play in my brain like an old movie.  No matter how I try to distract myself, the memories flood to the surface.  I have her little face flash in my mind when I’m unloading the dishwasher.  The last outfit Aimee and I dressed her in floats in front of my face as I wait at a traffic light on the way to work.  The feel of her soft skin on my chest as she slept next to me wakes me up at night, and it sometimes takes me a second to realize it’s Sam or Hugo that’s crawled into my bed, and not her. Sometimes when I make toast in the morning, I make two pieces of white bread and put honey on one, and jam on the other then cut them into 4’s because that’s how my dad served me breakfast every morning for a year while Stella sat on my lap.  When I wake up at night after uneasy dreams, I can’t remember if Stella’s DIPG was a nightmare, or really happened.  Then my eyes adjust to the dark and I see the paintings at the end of our bed with her footprints on it, and I remember that she really is gone.

It hurts every single time.

Now she’s been gone 4 years, which means she’s been dead longer than she was alive.  Yet the three and a half years she lived I can recall with great detail, whereas the 4 years that have passed since come to me in small chunks.  I can remember lots of things, but there are huge chunks of the last four years that are missing.  For example, I barely remember Hugo’s first year of life.  i don’t know what I did with him all day, I don’t remember when he first spoke, or walked, or got his first tooth.  I just know that he was 10 weeks old when Stella died, then suddenly he was 2 and I started remembering again.  I know I learned to drive and got my license, but I don’t remember any of my driving lessons.  I have forgotten how to cook my Nana’s scalloped potatoes.  But I can tell you exactly what I was wearing the day Stella got diagnosed.

I usually reflect as her death anniversary approaches what has changed in the way we live.  And as the years pass, the changes become more permanent and pronounced.

I recently realized that one difference in the time that has passed since her death is how I find her. When Stella first died, Aimee and I felt as though we really needed to hang on to her things. Each toy, every piece of clothing, each physical space that she had been in was a memory.  We couldn’t stand the thought of getting rid of anything that Stella had touched.

Recently, I’ve been trying to convince Aimee that we should move out of our home. I want to save money and get out of the city. I feel happiest up at the cottage surrounded by trees and water and where the boys can run and not have to worry about cars. I like the pace of life out of there. There is always time to stop an look closely at a turtle crossing the dirt road. The people who live there ask at the grocery store checkout how so and so’s mother is feeling and we spend time as a family reading books and doing crafts instead of being stuck in traffic. But when I talk to Aimee about moving, she always says, “I am never leaving this house. This is Stella’s house…how could you ever want to leave here?”. I have come to realize that Aimee still finds Stella in the walls of that physical space.  She can’t stand the thought of leaving the space that Stella was born into, lived in and died in.  And when she comes to Great Wolf Lodge, Aimee looks for Stella in the Cub Club and the Warm Pool, and she remembers her little yellow bathing suit and finds her in the shadows under the fake trees in the lobby.  But I don’t see Stella on the living room couch, or the splash pad at Great Wolf Lodge.  I don’t find Stella in her bedroom at home, or in her little pink teapot that still hang around the house getting played with once in a blue moon by the boys.  Aimee loves wearing the t-shirts or sweatshirts we’ve had made over the years that have Stella’s name and picture on them.  But I have to be reminded to wear them because although I like them, I don’t find Stella there either.

So I started to ask myself…where do I find Stella?  If not in her room, or her toys, or her clothes, or the house…where is she?

I came to the conclusion that because so much of me…my identity, my way of looking at life, my hopes and dreams…have changed since Stella’s diagnosis and death, I find Stella in the way I live my life.  I find her when I don’t get frustrated waiting in line at the grocery store because my cashier is “in training”.  I find her when I don’t have enough money to pay my phone bill, but I take the kids to Toys’R’Us and spend $40.00 on Lego.  I find her at work when a family I’ve helped hugs me after their Funeral and thanks me for making a difference for them.  I find her when I give the kids a second cookie after dinner, or let Sam wear pyjama pants to school.  I find her when I go for walks and take time to feel the sun on my face and watch an ant crossing in front of me.  I find her within me.  I have tried to take all the best parts of her and make them a part of me.  I don’t need to look for her in a physical sense anymore, because she is in every breath I take.

A few weeks ago, I ran into a very difficult situation at work.  After being told I was to be transferred to a new location, I had a concern regarding my new schedule and how it would affect my life at home.  “We don’t make business decisions based on personal lives,” I was told.  Any questions I asked were either ignored or answered with “that will be decided once you are at the new location”. I was frustrated beyond belief, and that’s when I found Stella.  Because as I was sitting in that room, listening to someone tell me that my family took second place to my duty as an employee, I got a moment of intense clarity.  There is nothing more important to me than time with my family.  I’d rather sell the house and live in an apartment than work a job that keeps me away from birthday parties, thanksgiving dinner, the Christmas Eve church pageant and my kids weekend soccer games.  Becoming a Funeral Director has made it abundantly clear to me that tomorrow isn’t guaranteed for anyone.  If we are lucky, we get to live to a ripe old age, but even then it is someone’s parent, sister, friend, aunt who dies.  And out of all the eulogies I’ve listened to, they all boil down to the same theme— the good times the deceased spent with the important people in their life.  What is the purpose of living a life where we forget the things that truly matter?  So even though it would make more sense for me to find Stella at the playground she used to love, the Dairy Queen I walked her to, or the yellow monkey shirt of hers Sam sometimes wears, I actually found her in a sterile funeral home office during an intense and difficult conversation.  It reminded me of a saying I read a long time ago on a card that said, “She will never be there when you want her, but she will always be there when you need her”.

Sometimes Aimee and I talk about how even though the time after Stella’s diagnosis was the worst time of our lives, it was also the best.  Because we had no purpose in life other than to be surrounded by the friends and family who meant the most to us.  And even though it is not possible to live a life like that every single day— obviously we need to work and clean and cook— I never want to forget that the most important thing in the world is spending time with the people you love.

So even though I could say that I find Stella on this itchy green carpet at Great Wolf Lodge, I think I really find her in my conviction that the one thing you can never get back, is time.  Whenever I want to find her, I just look for the part of myself that is braver now, surer now, and is letting her kids stay up past their bedtime right now because, hey, we’re at Great Wolf Lodge and Stella would have wanted it that way.  And yes, Stella, we will be having ice cream for breakfast tomorrow.

xoxoxox

We stopped at Stella’s tree on our way to Great Wolf Lodge to bring some flowers and Timbits (Hugo, Mishi, Gracie, Andge & Sam):

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Violet brought Sam his birthday cake at Great Wolf Lodge:

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The first day of school…Issac, Mishi, Sam, Hugo & Xavier:

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Stella’s little brothers… 4 and 5 already!

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We wish we could see Stella in person, instead of visiting her grave at Necropolis Cemetery, but Sam always finds her plaque and gives it a little kiss:

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Missing you sweet girl

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Happy 7th Birthday Angel

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Today, if things were different, Stella would have turned 7 years old.  Probably would have been missing a tooth or two.  With long hair past her shoulders, and a cheeky grin.

Not having her here hurts.

For some reason, this year the memories are sharper and clearer than they have been in years.  Each day leading up to her birthday is haunting.  April 15th was her due date.  I remember going swimming with my friend Deb that day.  I remember how amazing it felt to float in the weightlessness of the water with my 9-month pregnancy belly and how I was almost shaking with anticipation and excitement.  At that time we didn’t know if we were having a boy, or girl so I practiced writing both names we had carefully and lovingly selected on my notepad…

Evan Lawrence Bruner-Methven

Stella Joy Bruner-Methven

Which would it be?  I couldn’t imagine.

I remember on April 16th I was only one day past my due date, but I was despairing that I was never going to have this baby.  I had already been off work for 2 weeks and I was bored and impatient.  In a desperate attempt to entertain myself, I looked up recipes online of things that could be frozen and I decided to walk over to Sobey’s to purchase some ingredients.  I bought green peppers and ground beef and when I was walking home, I could feel liquid dripping down my legs.  I called my midwife and she told me to come in.  2 hours later I called Aimee at work and said the magic words…”my water broke”.  I still wasn’t in labour though, so Aim and I went to her dads for dinner.  We toasted each other with glasses of red wine and thought about what was to come.

April 17th I very slowly started to labour.  At first it was almost comical.  I sat in a big chair and listened to my “Hypnobirthing” CD.  The tiny insignificant first ripples of labour I thought were “it” and was proud of how I was handling the “pain”.  Ha!  First time ignorance.  Aimee and I walked and timed contractions, but it was slow going and everything that felt like it was “true” labour wasn’t really.  When you’ve never been in labour, I guess you don’t really know what it is.  Hours and hours of small tugs weren’t labour.  When full labour finally hit me, it was ugly and I wondered how I could ever have thought when I was sitting in the chair with my eyes closed meditating that I was in labour!!!  Real labour was horrible.  Back pain that brought me to my knees.  Thrashing and screaming and vomiting.  It wasn’t until almost midnight on the 17th that things got bad enough to go to the hospital.  My dad drove, my mom sat in the front seat and Aimee was in the back with me.  It was on that van ride that I realized Stella was gong to be born on my birthday.  I couldn’t think of a better way to ring in my 30th birthday than giving birth to our baby.

It was a long, difficult and extremely painful labour.  Stella was born at 4:10pm on April 18th.  I think Aimee said, “it’s a girl!” and though my heart was full of joy, all I could say was, “I’m going to throw up” and I promptly began vomiting as the midwife stitched me up.  Not exactly a Hallmark moment, but fairly indicative of what parenting is like.  Messy and hard.  Not very glamorous, full of ups and downs.  But, if you pay attention, a myriad of exquisite, unexpected gifts.

That was an amazing day.  I turned 30 years old and became a mother all in one breath.  My daughter burst into the world, with porcelain skin, bawling-face, fists waving and a shock of red hair that made everyone laugh in delight.  There were 10 people in the room as she was born.  Two midwives plus my DeeDee, Poppa, Auntie Heather, Tutu, GrandPa, Auntie Angie, Nanny and Aim’s best friend, Ray.  Sometimes when I picture that happy scene of her birth and her first breath, it overlays a heart-breaking scene 3 1/2 years later when she took her last breath, surrounded by almost exactly the same group of people that stood in a circle and witnessed the miracle of her birth.

Sometimes it feels like all my memories overlap.

A sea of crying faces at her birth.  A circle of sobbing at her death.

Choosing the outfit she would come home from the hospital in.  Choosing the outfit she would be cremated in.

A myriad of candles lighting up the night at our wedding. A path of flickering candles as we carried her body out the door.

Taking photos of her face covered in icing, eating her birthday cake with a “1” flopped over. Taking photos of a tree in the park with a candle that says “7” on it.

Up at night because she cried. Up at night because we cry.

So how do you celebrate the birthday of your first born, when she’s not here?  Funny how we’ve fallen into a routine.  Visit her tree then run away to Great Wolf Lodge.  As always, a mixture of wanting to remember her in her favourite spots, but also needing to try to forget by distracting ourselves with the noise and activity and complete sensory overload.  I have been missing her so much these last weeks.  I always miss her, but I find that as the boys get older and more “boy-like” with burgeoning interests in super heroes and sports, I retreat further into my fantasies of having a daughter.  That’s one of the cruelties of her death, not knowing exactly what she would have been like, what she would have liked or disliked, leaving it all open to speculation and dreams.  And suddenly, I’m seeing little girls everywhere and each one is like a dagger to my heart.  I’m sure there are just as many little boys around, but it’s the girls that have been making my chest hurt.  I suddenly feel like everyone around me has a daughter.  Two nights ago I started to rattle off to Aimee the names of all of our friends and said, “they have a daughter…they have a daughter…they have a daughter…”.  Out of 15 friends I named, only two had no girls.  It suddenly felt momentously unfair to me.  I suddenly felt so jealous that I wanted to scream and rage.  Admitting these feelings is hard.  I don’t like the way they make me feel.  it’s embarrassing.  I confided in one friend a few weeks ago that I wanted my girl back and she said something along the lines of, “But you have two beautiful and healthy boys!”  I immediately felt ashamed of myself for saying anything at all, then angry that I was ashamed.  Having two healthy boys whom I love with all my heart and would do anything for, doesn’t mean that I still can’t mourn the daughter who died, and the fact that I no longer have a little girl to love.  But it’s hard to admit that to people.  Hard to make them understand.  Of course I’m grateful for my sons.  Of course I am happy with them and can’t imagine life without them.  But that doesn’t mean I still don’t miss my girl and feel bitter for everything that was taken away from us.  It doesn’t mean that I don’t feel sad when I see little dresses with crinoline and pink Dora crocs or that I’m not jealous of the little girls in mini blue jeans and pink sunglasses toddling around at the park.  Grief is complex and I’m constantly trying to understand why I act and react certain ways to things.

A family that I served 8 months ago called me Friday.  The woman had lost her father at age 87.  She called to tell me how much she was struggling.  That she was “still” so sad.  She knows about Stella and said that she didn’t know how I did it.  That I’m so strong.  She kept saying that she wouldn’t be able to live if her daughter died.  And that she was embarrassed to still be in such a funk about her dad because, after all, he was old and led a full life. She asked me what my secret was.  I told her my dad always says, “secret weapon…no choice”,  but I also didn’t want her to think that I’ve just risen above grief and grieving.  So I told her the truth.  I said, “What you’re doing is hard.  There’s no timeline.  There’s no magic cure.  I’m on meds.  I take medication everyday for depression and anxiety”. I wanted her to know that even though I’m happy, I still need help.   I’m not ashamed of it.  When I wake up each and every morning, I make a deliberate choice.   I choose to be happy.  I choose to find JOY because I know that is how I can keep Stella alive.  I truly believe that when we are forced to live without someone we love, we need to take a small piece of them and inhale it so deeply it enters our pores and becomes part of our own breath and body.  So I breathe Stella each and everyday.  I breathe her spunkiness.  I breathe her willingness to find joy in small things.  I breathe her inability to be anything but herself.  I breathe her bravery and her cheekiness and her tinkling giggle.  I use the breath I have to parent her brothers with as much understanding and love as I can.  I use it to help the families I serve.  I open my heart a teeny tiny bit to each and every grieving family that sits in front of me and tells me that they have lost someone they love.  I still hurt, but I choose to live.  I keep a yellowed cut out picture of a card I got once.  It’s a dry, dessert scene with a tiny flower growing through the cracked dirt.  And it says, “There are defining moments in a life, when faced with the choice of giving up, or going on”.

That card is taped on the inside of our kitchen cupboard.  Every morning when I get up and I open the cupboard to get my teacup out, I read it.  And I make the choice.

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Choose life.  Choose joy.

In Niagara Falls tonight, Gracie (8 years old already!) wore her Mommy Juju’s wedding dress to dinner.  She looked so beautiful and grown up in it.  It’s a burgundy and cream sundress.  It made me remember my wedding to Aimee.  I remembered the poem that was read that night, 10 years ago this August.  It was a warm summer night.  We had lit the backyard with dozens of flickering candles.  At the time, it was the poem that best reflected the love Aimee and I felt for each other.  But tonight, I thought about the fact that it is for Stella too.  And I read it out loud and wept.

Happy Birthday my beautiful girl.  Despite everything…I’m so glad you were born.  Stella Joy Bruner Methven, April 18, 2009.

i carry your heart with me

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i carry your heart with me (i carry it in

my heart) i am never without it (anywhere

i go you go, my dear; and whatever is done

by only me is your doing, my darling)

                                  i fear

no fate (for you are my fate, my sweet) i want

no world (for beautiful you are my world, my true)

and it’s you are whatever a moon has always meant

and whatever a sun will always sing is you

here is the deepest secret nobody knows

(here is the root of the root and the bud of the bud

and the sky of the sky of a tree called life; which grows

higher than the soul can hope or mind can hide)

and this is the wonder that’s keeping the stars apart

i carry your heart (i carry it in my heart)

And I do.

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Sam lays some flowers at his sister’s tree for her birthday:

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Having a great time at Great Wolf Lodge 

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Every Friday night is pizza night and “Family Movie Night”.  The boys love it! (Xavier, Sam, Hugo)

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The Pain of Wisdom

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October and the change of summer into Fall is always hard for Aimee and I. We struggle with so many conflicting emotions. Happiness at our family and our two amazing sons, and the acute knowledge that something is missing— out little girl—and she is always missing from everything that we do. Every dinner, every Friday Family Movie night we have at home, ever holiday, every moment of everyday something is missing. It is difficult to live with the ghost of the past and all of the “should have been” or “could have been”’s that we think about. Just last night I was at the grocery store. It was all so mundane. The guy checking me out did the usual, “Hi how are you” and I said, “Great. How are you?” and he responded then I watched him bag the groceries. It struck me how surreal it was to be standing at the grocery store now, almost 3 years after Stella’s death. The same grocery store her and I walked to on a daily basis when I was on maternity leave with her. And when she got diagnosed with DIPG, we walked there all the time for Avocados and fresh air. And now there I was standing completely normally, having a meaningless conversation with someone, hiding completely what I’d been though. Suppressing the vivid memories I have of Stella at that same store. It’s such a tricky thing to remember and honour her without getting stuck in the past and without focusing so much on the heartbreak and sorrow that you miss all the gifts and joy of the present.  Some days are easier than others.  Almost 3 years after her death, it is easy to look back and think how far we’ve come.

But oh my God, I miss her.

I miss her laugh. I miss kissing the top of her forehead where the curls started. I miss watching the soft rise and fall of her chest as she slept. I miss all the dreams and hopes I had for her life. Last week I got in the mail a catalogue for a line of dolls called Maplelea. At first I was so excited because I love dolls and clothing and all the amazing accessories. But then I thought about the little girl I always imagined sharing that love with and I burst into tears. Poor Aimee didn’t quite know what to do with a blubbering 36-year old holding a doll catalogue and raging at the injustice of not having my daughter to share it with. So she just held me and let me cry. We don’t even know if Stella would have had any interest at all in dolls (truthfully my sense is no—whenever we gave her one, she would try to rip it’s head off…), but that’s part of the anger of it all. We don’t KNOW what she would have done or liked or disliked. And we will never know. All I have are 3.5 years of memories and a tear-stained doll magazine that is now at the bottom of a pile of bills. There are other little girls in my life that will look at the magazine with me. But I wanted it so badly to be MY little girl. The boys…well, I never really believed that boys are boys and girls are girls, but truthfully my guys show no interest in dolls. They like sword fights, zombies, lego and bike riding. They are constantly leaping off of furniture, running in circles and climbing anything they can find.

It’s very interesting to me the way that Aimee and I have reorganized our lives since Stella died. My new career as a funeral director turned out to be the best decision I could have made. Being around other people and their acute grief is comforting to me somehow. It makes me feel less alone, and stronger, when I see the way that all human beings must deal with and overcome that final separation of death. And there is such a feeling of accomplishment and peace for me when a family thanks me for helping them. Stella comes up often in my work. I share her with anyone and everyone when it is pertinent, or I think it will be helpful. I have also had the incredible opportunity of sharing Stella’s story at various conferences around Canada in the last year, sharing with groups of Funeral and Cemetery professionals the lessons and legacy of Stella Joy. I have needed to find a way to keep saying her name. To keep proving to myself, and to others, that she mattered. That she only lived three years but she made a difference.

She is the reason that I have the opportunity to wake up each morning and help another family trying to navigate the deep and complex waters of grief and trying to plan a ceremony to honour their loved one. She is the reason that my kids have been to Medieval Times twice in two months, to the zoo, the pumpkin patch, bike riding after school. She is why they get trips to the store for ice cream and any Hallowe’en costume they want (Hugo was THIS close to being Tinkerbell this year, but changed to a knight at the last minute swayed by the little plastic sword). He is why Aimee and I never seem to have money to go out for dinner, but always have enough to take them to Great Wolf Lodge. She made our family stronger and closer. She reminds me not to get frustrated at traffic or lineups. To tell people that I love them whenever I get the chance. She taught me to enjoy the little moments of life, the bath times and the evening walks. Because, the little things are really the big things.

We will be spending Stella’s death-anniversary at Great Wolf Lodge again. Since all the dates are so close, we will also celebrate Sam and Xavier’s birthdays there. (Sam turns 4 October 20, Xavier turns 4 October 21 and Stella died October 22). It’s been interesting seeing how happy and excited the boys are to be going to Great Wolf Lodge to celebrate birthdays while the adults know that we are also going to mark an occasion we would rather forget. This cluster of dates is such a reflection of what our life is like now. Balancing joy and heartbreak all in the same breath, learning to find happiness and joy in while still honouring grief as we navigate both happy and sad occasions.

We are in a rhythm now. We know how to mark certain days and how to anticipate what is coming. There is normalcy again. There is hope and light and laughter and true joy. We are guided by our precious Stella star who reminds us each and every day to find something to be grateful for. I would give anything to hold her again and to tell her how amazing she is, but I know I can’t. So instead, I will continue to look to her for strength and find her inside of me whenever I am lonely.

“Pain can change you. But that doesn’t mean it has to be a bad change, if you take that pain and turn it into wisdom”.

Love you always baby girl.

A little ice cream at the zoo for Stella:

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Change of Season…fall for Sam & Hugo:

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Letter to Stella from cousin Gracie:

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At the Pumpkin Patch:

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Remembering that smile always and forever.  Stella, age 2:

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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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Butterfly

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Butterfly

 

First of all, Aimee and I would like to thank everyone for their heartfelt wishes and for sharing our excitement and joy about the upcoming birth of our third child in a few months.  There were, as expected, some people who posted negative and/or derogatory comments that were meant to be hurtful, but luckily we have the best web team in town (we heart Jeremy and Karen), who immediately removed any negative comments in order to preserve this website as a place of friendship and positivity.

 

One of the interesting things for me with this pregnancy has been to experience the miracle of a baby growing inside me— getting bigger, and kicking and rolling to let me know how alive he is inside—at the exact same time that I watch the other baby who grew in my tummy struggle to do even the most basic things.  We never dreamed when we inseminated in the fall that Stella would still be alive 6 months later, and never imagined trying to cope with the realities of life and death each and every day.  But here we are balancing Stella’s morphine, zofran, atropine and phenobarb, Sam’s foray into solid foods, Aimee’s breastfeeding tea, and my anti-depressant and prenatal pills.  A mixture of life and death all living together in harmony with no concept of where either of them are at any given time.

 

Funny thing about death— I never thought about it much before, but now I think it, feel it, talk about it every single day.  Before this horrible cancer hit my family, death was something that happened to old and sick people.  My grand-parents have all died in the last 16 years of my life, but they ranged in ages 74-94 so…well, I always felt like they were supposed to die because they were old.  And I would read about other peoples children dying and I would feel sad for a minute or two but, you know how it is, you turn the page of the newspaper and get caught up in the newest Brangelina news, and it goes right out of your head.  How I long for those days of ignorant distractions.

 

But now death is on my radar permanently.  It’s in my head and my heart and my line of vision.

 

I still sometimes look at my beautiful daughter, he lips perfect and pink, her hair flowing around her head, her porcelain skin almost luminescent, her smile as bright as the noon sun… and I shake my head that she is dying.  How can I possibly prepare to say goodbye forever to this girl who owns a huge piece of my heart?  And I often wonder when people come to visit us, when they see her sitting on my lap and she’s all warm and so very ALIVE…I wonder if they leave and think about how one day soon she will be gone from us forever.  Gone from our lives, never to be seen, heard, touched ever again.  Ever.  These thoughts haunt my nights.

 

In 20 days it will be 11 months since Stella was diagnosed with a DIPG tumour.  In so many ways, we can’t believe it’s been that long, but in many ways it also feels like we’ve lived 25 lifetimes since then.

 

Aimee and I have spent the last several weeks trying to organize all the videos we have of Stella.  It’s completely bizarre to literally watch with your very own eyes the disintegration of your child from active, talkative, bright-eyed toddler to someone who sits on the couch for hours at a time, eyes unseeing, head unable to look up, voice silenced by cancer.  On the good days we can watch the videos and laugh at our daughter’s antics.  On the bad days we sit and cry, stunned into silence by how much Stella has endured these last months and how much our friends and family have suffered as we all try to continue smiling, even though we are all witness to something horrible happening to our beloved Stella.  She may not be suffering, which is our only hope, but those of us who love her sure are.

 

All these jumbled thoughts came to a head a few days ago when Aimee, Sam, Stella, Auntie Angie, Auntie Juju, Gracie and I went to the butterfly conservatory in Niagara Falls.  It was a great trip, and despite Stella being exhausted for much of it, she smiled lots and we know she had a great time.

 

At the butterfly conservatory, I thought about the well-known cultural myths associated with butterflies as a symbol of transformation.  The metamorphosis of a butterfly really is miraculous when you fully comprehend the massive amount of transition that it undergoes from egg to caterpillar to cocoon until it finally unfurls into a fluttering, glorious flash of colour and energy.  It made me think about how our lives—all of us— have changed in much the same way.  Life has changed to such an extreme that Stella, Aimee and I are completely unrecognizable.  The life of a caterpillar wrapped in its cocoon versus a butterfly.

 

In Niagara Falls, one special butterfly came to Stella and seemed to want to stay with her forever.  It occurred to me that this insect nuzzling Stella’s cheek illustrated perfectly the deepest symbolic lesson of the butterfly.  A butterfly has to learn to recognize the changes in its life and body casually and unquestioningly, just as Stella has done.  A butterfly must have an unwavering acceptance of its journey, although it may at times be scary and dip into the great realm of the unknown.  The butterfly surrenders itself to metamorphosis, it believes wholeheartedly that the transitions and changes in its life will all lead to the right place, and fighting against changes is useless.  The butterfly reminds us that we ALL need to have faith in the journey, just as Stella seems to.

 

Since being at the Butterfly Conservatory, I’ve started to see butterflies everywhere we go.  They seem to come out of nowhere and flit around our heads, then disappear into the sky or the bushes nearby.    Each time I see one, I remind myself that we are all in the middle of a great metamorphosis, and our greatest responsibility is to accept the changes that come our way and have faith that, in the end, we will emerge into the people we have the potential to be.  But until then, the journey is our only guarantee.

A special butterfly for a special girl:


Stella delighted at the butterfly that landed on her stroller (left side):


Gracie and Stella, cousins and besties!


Great Wolf Lodge!


Great Wolf Lodge Waterpark:


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