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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Jenga

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Jenga

 

It’s been 4 weeks since the Doctor told us Stella likely had 1-4 weeks left to live.  4 weeks since Aimee and I sat and wept over Stella’s pale and skinny little body as she lay sleeping.  4 weeks since we started to call some friends and let them know “this was it”.  4 weeks since ewe began the process of “letting go”—whatever that means.

 

Now, 4 weeks later after waiting and watching and holding our breath… Stella is very much still here, very much still alive, very much hanging on– even as we are being urged to let go.

 

It’s a difficult, if not impossible, position to explain to someone who has not gone through watching someone they love die slowly.  You are torn between wishing they would be here forever, and wishing that their torture (and yours) would end.  Stella is not in any pain, and everyone is eternally thankful for that, but I still find it difficult to engage with her now.  The Stella I knew once is long gone, and although I love “this Stella” very much, I have been missing and mourning the old one for months already.  This Stella is only pieces of my old Stella.  They look similar, but my old Stella was much rounder and chubbier whereas this one is tall and thin.  Their laugh is exactly the same, but my old Stella laughed a lot more.  The hair is similar, but this Stella’s is longer and lighter.  They are both completely mischievous, with a great sense of humour and a smile that can stop my heart immediately.  This Stella gets cuddles all day and everyday, but the old Stella hated being held.  She wiggled away from hugs, dodged kisses, and sat on my lap only when she was sick, or asleep.  My old Stella pushed the other kids, stole their toys, dominated most games, chased, disobeyed, ran away.  This Stella watches other kids do this, but sits silent and still in my lap, unable to keep her head up with drool falling out of her mouth and soaking her neck.  The saddest thing is that I know all the pieces of my old Stella are still here—but they are being literally strangled to death by a relentless tumor in her brainstem that is ever so slowly cutting her off more and more from us.  Each time Stella loses another function, or has another “dip” in her cancer, I am forced to mourn a little bit more.  I know now that the grieving process for Stella will encompass years of my life.  It started June 24th, 2011 and has continued ruthlessly day after day, month after month and shows no signs of abating or ending.  We still have so much left to mourn…it’s too overwhelming to even think about some days.  I keep wondering how much longer we can all keep going like this…I passed my limit weeks ago, yet as so many parents who have been through this before have told me, you just have to keep going.

 

So we do.  Because you never know how much you can do, until doing it is the only choice you have.

 

Now we measure how “good” or “bad” a day is in terms of smiles, naps and bottles of milk consumed.  When someone asks, “How’s Stella today?” Aimee and I robotically answer, “Pretty good.  She slept three hours, smiled about 4 times and drank 5 bottles of milk” or, “It was a tired day for our girl, she smiled a couple of times, and had 2 bottles of milk”.  It’s a crazy thing to have such a vibrant life boil down to—smiles, naps and milk consumed.  Just like a newborn…except she’s not.  She’s a beautiful, smart 3 year old girl.

 

Waiting for Stella to die reminds me so much of playing that 80’s game Jenga.  You know Jenga and the old jingle… Jenga, Jenga, J-j-j-jenga. you take a block from the bottom and you put it on top, you take a block from the middle and you put it on top. That’s how you build the tower; you just don’t stop. You keep building that tower putting blocks on top. It teeters and it totters, but you don’t give up; it weebles and it wobbles, but you build it on up. You take a block from the bottom and you put it on top, you take a block from the middle and you put it on top, till someone knocks it over, and that’s when you stop…”  For me, Stella is that Jenga tower, where pieces keep getting removed and you hold your breath as the tower shakes, and can’t believe it’s still possible to be standing there, even with all those pieces missing.  Then, even though you knew it was coming, suddenly the tower comes crashing down in a pile of wooden rubble, startling and disappointing you.  I keep looking at Stella, lying here on the couch next to me, and wondering: “How many more pieces can this tumor take from you before you are reduced to a jumble of pieces like a Jenga tower?”  But Stella won’t tell me.  She just looks up at me with her big blue eyes and stares directly into my soul, daring me to ask more questions that she will refuse to answer.

 

4 weeks is over.  We were all wrong again.  Stella didn’t live 3-4 months.  She didn’t die 4 weeks after they told us she would.  Stella isn’t dying right now, Stella is still living, still building her Jenga tower of smiles and surprises.

 

Stella continues to teach me things everyday, and maybe that is why she’s still here— because she knows I still have so much to learn from her.  Today’s lesson…when we can’t change a situation, we are forced to change ourselves.  And so, Dear Stella, I am trying hard to keep up with you today and will try again tomorrow.  And for the next 4 weeks.  And the next 4 weeks after that.  And the next 4 weeks after that, for as long as you need me.  And when you don’t need me anymore, I will still be here trying my hardest to live the life you taught me I should be living— one of raw honesty, pure love, overwhelming gratitude and no fear.

We must let go of the life we had planned so as to have the life that is waiting for us – Joseph Campbell

 Stella plays piano at Gracie’s house:

Stella helps Ray celebrate her birthday:

Gracie paints Stella’s toe nails for her:

Stella and Sam baking cookies:


My heart lives here:


 

 

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A Day In Time

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A Day In Time

 

The days continue to pass by, a blur of television shows, cuddles, eating and hanging out with the people we love most in the world.  There are no “special” days where we do amazing and incredible things, because everyday is special simply because we are together.

 

For the most part I can’t tell the days apart, other than therapy on Tuesday’s and our standing dinner-date with friends on Thursday.  Sometimes the minutes and hours pass by so slowly that I wonder if they’re moving at all, and sometimes I can’t believe that so many minutes have melted into hours, days, weeks, months.  Everything has changed but our days have felt very much the same since summer ended.  It’s not necessarily a bad thing. I find great comfort in routine and we have settled in to one quite nicely.

 

At 7am like clockwork, my dad comes over and makes tea for me followed by two pieces of white toast cut into quarters, one with honey and one with jam.  Aimee feeds Sam and Stella sits in my lap glaring at the world.  She has never been a morning person, which I’ve always found strange since she is the one who dictates when we get up.  Before all the medications, her wake-up time was 5:15am for over a year.  Bleary-eyed Aimee and I would take turns taking Stella out to the living room to play and feed her until it was time to leave for daycare/work at 7:30am.  Stella would yell, tantrum, throw food and generally be the biggest grump you could imagine and I would just look at her and think, “Kid…why do you insist on getting up when you obviously don’t want to be here!??”.  I never got an answer, just scowls.

 

At about 9am after we’ve eaten and watched the morning news with Stella perched on one of our laps, my sister will come across the street with Xavier.  We sit around chatting, sharing stories and planning our day…which is usually no plan at all.  We give all the kids bottles, swapping off whichever one needs something.

 

At around 10am one of us will get up to get dressed and start getting the kids dressed, diapers changed and sometimes (on special occasions!) we even shower.  We take our time, we chat with one another, we cuddle and coo and tickle the boys.

 

Lunch is often early and then we try to get out of the house for a family walk.  Destinations vary…Sobey’s…Library…Starbucks…Shoppers Drug Mart.  Piling Sam and Stella into our new double stroller, a heap of mittens, hats and blankets we never have anywhere specific to go.  We walk the streets where Stella once rode her bike, pass the parks where Stella once swung and screeched, visit the places we used to dream she would go.  But, most of the time, we aren’t sad.  We are happy to be together, happy to be outside, happy to have our family of four.  We know it’s temporary but we try to just breathe in the crispness of winter and watch our children carefully for any signs of a smile.  We collect these smiles like precious jewels tucked into our hearts, hoping we can take them out again someday and roll them around in our hands when we are searching for a warmth that we cannot find.

 

In the afternoon Stella usually curls up in someone’s lap and sleeps for anywhere between 2 and 4 hours.  Whoever doesn’t have sleeping Stella in their lap tries to tidy the kitchen and start laundry while simultaneously feeding and playing with Sam.  We read the paper and visit with anyone who stops by with kind words, food, hugs.  We kibbitz over what to have for dinner and when Stella wakes up in the late afternoon she is usually ready to have a tea party, paint her nails or dance.  So we play until she is exhausted and Sam is screaming in the swing we plopped him in.  We eat dinner and watch episodes of Dora until Stella drifts off to sleep and Sam is sound asleep in his crib.

 

These are simple days.  A far cry from the old life where we would rush out the door for work, dropping Stella off in a run at the daycare, work all day, rush home from work to pick up Stella, clang around in the kitchen furiously trying to cook while also trying to keep Stella from killing the dog, or us.  Rush through dinner, get Stella ready for bed, do dishes, pack lunches, squeeze in homework and school classes iron clothes for the next day, bed.  Begin again.

 

Life nowadays is not what we expected it to be.  It is not what we wanted and it is not what we planned or dreamed.  There is a lot of fear and there are a lot of tears.  But, it is also not without surprise moments of joy and laughter and happiness and gratefulness.

 

Tomorrow is not guaranteed for any of us.  But right now Stella is sleeping peacefully on Aimee’s lap curled in a ball, Sam is lying on the couch laughing at the ceiling and I am wishing I could freeze this moment forever.

 

 

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Holding Stella (By: Aimee Bruner)

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Holding Stella (By: Aimee Bruner)

 

I remember the first time I held Stella in my arms as if it was yesterday.  It was at about 4:07pm on April 18, 2009, a few minutes after she burst into the world.  She was tightly wrapped in a pink blanket and her strawberry blond hair that stopped my heart, stuck out from underneath the tiny hat she was wearing.  From the moment that I touched her and felt the weight of her small body in my arms, I knew that I was holding the most incredible gift I would ever have.  This, up until Sam entered the world, by far, was the proudest moment of my life.  Now, they both share that moment.  As a baby, Stella never liked being held in that “still” and “cozy “kind of way all new parents dream of.  If you were going to hold her, she had to be facing out and you as the “holder”,  had to be standing up, bouncing around the room like the energizer bunny.   As she got older, the only way you could get her to sit still in your lap was to bribe her with some kind of food which she would  shove in her mouth just before she leapt off your lap.  At night time, Stella always fell asleep in our arms as she drank her bottle (yes, a habit that we as naive, new parents somehow started and didn’t know how to stop without many “painful” sleep training sessions).  Although it took what often felt like an eternity for her to finally relax enough to stop fidgeting and give up the fight against sleep, eventually her breathing would change and the warm weight of her body started to feel like a blanket on your lap.  This is how you knew that it was then safe to squeeze her tightly and kiss the curls on top of her head without waking her up.  For as long as I live, I will never forget that feeling.

 

I remember my mom telling me once that she secretly used to find a weird sense of comfort when I was sick as a baby because it was the only time that I would lie happily and still in her arms.  Over the last 2.5 years, I found myself feeling the same thing with Stella.  The only time she wanted to be held tightly against us for an extended period of time was when she was sick with a cold.  On these occasions, Mishi and I would sit as still as possible (so as to not to disturb her enough to bring an abrupt end to such a peaceful moment), wrap our arms around her and hold on for dear life.  As she got older, she started to want us to sit and read books to her on a daily basis.  No matter how much she loved the book, she never sat still in your lap.  I’ll never forget her wiggly little body, moving forward, backward and from side to side constantly.  She never stopped.  It became a sporting event just to try to keep her balanced and from falling off your lap.

 

Stella always preferred to be held by Mishi.  If Mishi was anywhere in the house, Stella would “demand” to be with her rather than to sit or play with me.  Although frustrating at times, for the most part, it didn’t bother me.  Stella and I have a special bond that only the two of us could have and I know how much she loves me.  That being said, I would be lying if I didn’t  say that I liked it when Mishi was off doing something and it was just Stella and I.  When it was just the two of us, she happily played with me or “sat” in my lap to read books.  Those moments were always precious to me  and I remember every single one of them.  Just before Sam was born, Stella started wanting ME to hold her on my lap.  At first, it only happened  a few times a week but it made me happier than I’ve felt since late June.  Since Stella’s diagnosis, on particularly hard days, I used to think that I would end up having to sit on the “sidelines” and watch the last few months of my child’s life go by without getting to hold her in my arms.  A selfish thought I know, but one that hovered over me as I cried myself to sleep too many times to count.  I now get to split the time of holding Stella with Mishi every day.  This may have a lot to do with the fact that Stella sees me holding Sam and wants a piece of the action but part of me also thinks that Stella is giving us both what we need right now – for Mishi, it’s a break from the weight of the bittersweet pressure of being the only one to hold Stella, carry Stella and be so intimately and physically tied to the catastrophic reality of what is happening to our child.  For me – it’s the gift of feeling so physically and emotionally close to her that it’s impossible to decipher where our two souls begin and end.

 

Stella, I will be forever grateful for this.

 

Now, most of my days are spent wrapped up in a warm heap of blankets with Stella.  We don’t read books the way we used to but we spend our time hugging and pulling each other close.  I feed her avocado and wipe ice cream from her face.  She pinches my cheeks when I’m having a conversation with someone else in the room and not paying enough attention to her and she wiggles her torso around while dancing to the intro song to Dora.  We have tea parties with her favourite puppets and pull the blanket over our heads to hide from one another.  Every day, usually around 1:00pm, her head starts to sweat.  This is the first sign that sleep is setting in for her nap.  As she tries to fight it, her already laboured and almost non-existent speech gets close to impossible to understand and as it used to when she was a baby, her breathing changes as she falls asleep.  This is when I want to freeze time.  I know that it’s not an option but I want to do it anyway.  I’m terrified for the day that I don’t get to have her on my lap but I work really hard not to allow my thoughts to linger in that space for too long.  Instead, I try to hold on tight and freeze the memory in my mind.  I want that feeling of her warm little body nestled into mine, my face buried in a heap of her sweaty curls and the grip of her grown up “toddler” hand around my thumb, to be one that I can carry with me for the rest of my life.

November, 2011

June, 2011

July, 2011

 

August, 2011

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Routine

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 Routine

 

Sometimes I can’t believe how easy it is to get into new routines, and how quickly you forget how it used to be.

 

I actually have no idea how many weeks Stella and I have been on the couch for…sometimes it feels like forever, but then I’ll look at a picture from a cottage or trip and think, “was that really only 6 weeks ago??”.  Seems like a lifetime ago.

 

We are so routine oriented now that sometimes I find myself forgetting that Stella is dying.  I know that sounds strange given what we’re doing and what’s happening to Stella, but we’ve got everything down to such a science now regarding daily visits, doctors appointments, meal times, med times, hours on the couch playing, diaper changes, etc. that it almost normalizes it.  Even though I’m cognitively aware of what is happening with Stella and can speak about it quite effortlessly (sometimes even eloquently), I feel like my mind hasn’t quite grasped the permanency of death yet.  I am aware that the energetic, running, singing, mischievous Stella has already been lost in this journey, and though I’ve been grieving that loss slowly, her body is still here and her soul is still housed in this (almost unrecognizable), body.  The warm weight of her on my lap each day, the smell of her hair, the angle of her fingers is all so familiar to me now, it permeates every pore of my body.  I can’t easily picture how life used to be before the couch, and I find myself actually enjoying spending so much time with Stella and Aimee and our friends.  In the face of this huge tragedy, I am sometimes happier than I’ve ever been.

 

I’ve been trying to wrap my head around this twisted concept, and the only thing I can come up with is that the happiness comes with the sadness because the life we’re leading right now is so conflicting.  On the one hand, we’re losing our daughter.  We’re losing our dreams for her, our hopes, our hearts.  What we’re witnessing is completely, unbelievably tragic.  Yet, the raw pain and emotion has brought out the best in us, the community and the people we love.  Our home is filled everyday to the brim with family and friends who stop by for visits and chats.  Our freezer is overflowing with delicious meals lovingly cooked by friends, our table holds a stack of “Thinking of You” cards.  The toy box is full of new toys and stuffed animals and pictures from friends.  Stella has enjoyed lavish birthday parties, a Christmas party, numerous trips to cottages, Riverdale Farm, the zoo, playdates, trips to toy stores where she picks out anything she wants (including a battery-operated black mercedes car she tooled around the neighbourhood in for a few weeks).  We entertain groups of people we love everyday in the living room while Stella sits right there listening to us talk.  Last night a bunch of us girls sat around drinking wine and laughing our heads off until almost 11 at night, telling funny stories about life and work and High School.  All the while Stella sat interacting, entertaining and distracting us.  I’m delighting in spending so much time with so many people I love that it’s hard to imagine life any differently now.  I don’t remember what it’s like to have a quiet day or night with no visitors, and Stella probably doesn’t remember what it was like to live a life where five people at a time weren’t tripping all over themselves to make her smile, just for a minute.  One smile from Stella goes a long way these days!

 

That’s why, when I allow myself to go there, I’m becoming increasingly terrified about a life without Stella…because for the last 15 weeks my entire life, has been Stella.  Stella magnified and highlighted by trips, ice cream for breakfast, visits, puppet shows, laughter, love, community, family.  I try to imagine what I would do if I woke up one morning and she was suddenly gone, and the only thing I can picture doing is looking everywhere, until I find her.  I picture sitting on the couch and waiting for her to come join me for “snuggies”, sticky ice cream kisses and Dora the Explorer.  I picture patiently watching her closely, anticipating those “good” windows where the gleam in her eye comes back momentarily, and she laughs before she does or says something she knows will get a big reaction from whoever is around.  I picture looking out the window with her when we hear a car door slam to see what fun person has come to visit us today, bringing treats and smiles and fresh energy.  I picture all these things, but, as hard as I try, I cannot picture her being gone forever.

 

Stella’s decline seems to have slowed down momentarily, and so it looks pretty positive that she’ll be around to meet her little brother next week.  The thought both thrills and terrifies me.  We didn’t dare to guess when she was given three months to live in June whether she would still be here, or what state she would be in.  I always pictured her dying before her brother arrived, even though Aimee and I secretly hoped they would get to meet in person.  Now the reality of having a newborn baby coupled with a dying toddler is starting to feel a bit overwhelming to me.  Adding to the picture is the fact that my sister, who is completely adored by Stella, a daily visitor and huge helper, is also pregnant with her first child and is due next week as well.  So…in the next 10 days we will have two newborn baby boys added to the daily mix, and one newborn-like two year old to look after.  Even typing those words made my stomach churn a bit.  I picture my beloved routine turning into chaos and I feel scared.

 

I wonder how we will manage.

 

I wonder if we will be able to give both of our children the love and attention they need as one gains new abilities and one loses them.

I wonder if Stella will ever even let me hold her brother or if she’ll be too jealous.

I wonder if I will be able to appreciate my son only for who he is and who he will become, not for the void he will help to fill when my daughter dies.

I wonder if my son will be able to feel our intense love for him, even if we are grieving and sad some of the time.

I wonder if Stella will be happy about her brother, or upset that some attention is away from her.

I wonder if I will be able to love my son with the same wild abandonment and trust that I love Stella, or if losing her will make me afraid to love someone that much every again.

 

As always, there are so many more questions than answers.  Since the beginning of this journey we have had people telling us to live one day at a time.  This is good advice, but thinking days in advance is starting to feel like it’s too much as well.  I think I might be living hours at a time for the next little while.  I think, just this once, I might have to give up on the idea of routines and planning and just let it be and have faith in myself, friends and family and the universe.  But boy, does it ever scare the crap out of me.

WAITING FOR BABY

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