Ray of Light

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Ray of Light

 

Mother’s Day is not a holiday full of sappy cards, brunches at a restaurant or potted plants in our house.  It’s a day of reflection, of memories and going through the motions of a holiday that has lost much of its lustre.  Aimee and I both wholly respect and love our mother’s dearly and are eternally grateful for the gifts they have given us throughout our lives, but we try to celebrate them everyday, so “mother’s day” is yet another reminder of all we have lost in our own lives.

 

This year a team of our closest family and friends took part in Meagan’s Walk, a fundraiser in Toronto that was started 12 years ago in memory of Meagan, who died of DIPG at age 5.  It’s a 5km walk that raises money for brain tumor research at Sick Kids Hospital.  It was an early start time (8:30am), and I was so honoured and impressed that our friends came, especially those who dragged their small children to downtown Toronto on subways, streetcars and buses lugging strollers, diaper bags and ziploc’s full of home made muffins.  Donning our “Stella’s Stars” T-shirts, we sauntered through downtown Toronto with thousands of other families and friends of people affected by brain tumors.  To be honest, I wasn’t feeling particularly emotional while we walked.  It was actually a very fun, social event and a chance for me to catch up with friends I don’t get to see nearly often enough, so I was a bit distracted from the actual purpose of the event, which was to raise awareness of brain tumors.  But at the end of Meagan’s Walk, everyone (all two thousand of us) lined up and “hugged” Sick Kids Hospital by forming a human chain around the block.  As we gathered to complete the hug, Aimee remarked to me softly, “Isn’t it f—ked that we’re walking behind people wearing our kids face on their shirts”.  I knew what she meant.  Stella’s face beamed out at us from the back of a t-shirt with a very succinct 2009-2012 below it.  Blech.  The emotions began to bubble up to the surface as the magnitude of all we lost worked its way into my brain once again.  As Aimee and I stood arm-in-arm with the people who have held us up the past almost two years, I couldn’t stop crying.  I cried for Stella.  I cried for Emma and Johnny and Evie and Miette and Oliver and Joseph and David and Jaclyn’s Family and Willa and Mackenzie and Jonathan and on and on and on.  I cried for the children pressing their faces against the windows and staring down at us from inside the hospital.  I cried for the mother’s celebrating mother’s day tomorrow who lost their child(ren).  I cried for friends and strangers.  I cried and cried and cried.

 

And I thought about Quinn.

 

This year, along with being our first mother’s day without Stella, it is also the first mother’s day for our best friends Ray and Brad, who, two weeks ago, welcomed their daughter Quinn Elora Needham to the world. She is tiny and dark haired, with little fighting fists and an adorable pouty mouth.  Ray has been Aimee’s best friend since they were 16 years old, and when Aimee and I started dating 10 years ago (Ray and Brad got together the same year), we became a natural foursome of friends.  I always think of us as Lucy-Desi-Ethel-Fred (although who’s who is up for debate.  Personally, I think Brad is closest to Lucy).  When Ray got pregnant, we were as excited and happy for them as we would be if it was our own child.  It was a long, hard and complicated road for Ray and Brad, so their pregnancy was about as close to a miracle as I’ve experienced personally.  As soon as I knew Ray was pregnant, I knew it would be a girl.  Stella was aware Ray was going to have a baby, and was excited as well.  She would smile and stick her tongue out when I would ask her if she was excited to meet Ray and Brad’s baby.  After Stella died, the baby inside Ray continued to grow and thrive.  Our grief with Stella grew and changed at a similar pace to Ray’s pregnancy.  I would look at her swollen belly knowing there was a life growing and flourishing inside, and remember distinctly being pregnant with Stella.  I remembered when her little kicks fluttering within me were like butterflies, then stomps.   I remembered when Aimee and I would cuddle on the couch at night and marvel at the life under our hands, the way Ray and Brad did as they awaited their child.  I would see Brad put a palm on his wife’s swollen belly and smile as he was rewarded with a small kick, and my heart would squeeze in a mixture of happiness for our friends and sadness for ourselves.  As Stella lay dying, this baby was living.

 

Back in December, when Aimee and I were in Hawaii, Ray and Brad were scheduled to find out the sex of their baby.  I knew it was a girl.  I don’t know how I knew, but I did without a doubt. That morning, we were waiting by Aimee’s phone for the text message that would confirm my knowledge of “girl”.  Instead, we got a message stating that the amniotic fluid was low and they were awaiting another ultrasound.  If it turned out her fluid was leaking, Ray would lose the baby.  Aimee and I felt sick to our stomachs.  Our friends couldn’t lose this baby, life couldn’t be that cruel.  As we wandered, dazed, down the hotel hallway and past the shops, we floated into a personalized Christmas Ornament Store that I had discovered the day before.  I was drawn to it because when I had walked in previously, all of the “sample” personalized ornaments had the name “Stella” on them.  Crazy.  But today, I noticed something else.  Next to one of the Stella ornaments, there was another one that said “Quinne” on it.  I was stunned as “Quinn” was the name that Ray and Brad had told us they would name their baby, regardless of its sex.   This ornament had an extra “e” at the end, but still…it was too much of a coincidence. In this case, the name was on a pink ornament…girl as I suspected!  As soon as I saw those two ornaments hanging next to one another, I knew that Ray and Brad’s baby was going to be okay.  I don’t know what I believe as far as spirits and afterlife and messages from beyond, but I knew without a doubt that this was some sort of sign from Stella letting us know she was looking after her little friend.  There they were, side-by-side, Stella and Quinn(e).

 

Later that week, we found out that Ray’s fluid was fine, and that the baby was, indeed, a girl.  I love being right.

 

On April 25th, 2013, exactly a week after Stella’s birthday, Quinn burst into the world.  Two days later, I headed to the hospital to meet her for myself.  As Aimee and I entered the doors, I was nervous.  I wasn’t sure how I was going to react when I met Quinn.  When I walked into the hospital room though, I walked into a room where the love and friendship was palatable, and because of that, I relaxed immediately.  This was a safe space and it was okay to cry here.  Seeing another little girl, looking down at a bundle of faith and dreams in my arms both broke my heart and reminded me of all the hope and joy I have for the future.  Quinn’s eyes were closed as she sighed quietly and nuzzled into my arms.  I allowed myself to imagine Quinn as a little girl, dark curls bouncing on her shoulders as she giggled at the cottage.  I thought about what she would look like as a sturdy toddler, toothy 9 year old, and athletic teenager.  I wondered if she would be a good writer like her parents, an athlete, a scholar, a goofball.  I inhaled the sweetness of her newborn scent, stroking my finger on her cheek, breathing in her promise and breathing out her potential.  I noted dark eyelashes resting on ivory eyelids, pink fingernails and wisps of hair tickling her forehead.  I fell in love at first site and my heart, without reservation, welcomed her in.  She would forever be one of “my” kids, joining an elite club of special little people that fill my heart.

 

Weeks after Stella was diagnosed in June of 2011, her two best friends (Flora and Arin) each welcomed sisters to their families.  Flora’s sister Alice Caroline Joy was born on July 30, 2011 and Arin’s sister Ayokari Estella (Ayokari means “joy is all around in Yoruba), was born on August 1, 2011.  I’ve always thought it was incredible that just as we were losing our little girl, Stella’s best friends were each gifted with one.  It has to mean something. It has to.  Each of these little girls will always be extra special, and each carries a bit of Stella with her, both in their names and their personalities.  We don’t have our little girl on Earth with us, but we have Gracie and Alice and Kari, and now Quinn.  A whole little army of smart, strong, spirited little girls who, along with our sons and Xavier and other kids we love, help fill the gaping hole left behind by Stella’s death.

 

Standing side-by-side at Meagan’s walk today, part of a massive hug, made me think of the circle of life.  Births, deaths, little girls, mother’s day.  It all filled my heart and spilled over into salty tears down my cheeks. And I thought about how different everything is this mother’s day, and how sometimes you have to let yourself die inside so you can rise from the ashes and become a new, hopefully better, person.

 

Oh, and Ray and Brad picked out the middle name “Elora” after they read the blog

because Elora means “ray of light”, which reminded them of Stella.  And then Ray pointed out her name was Quinn E.  “Quinne”.  Guess Stella knew best after all.  She always did.

 

For Mother’s Day today, I wish everyone- parent or not, the gift of learning to build bridges, not walls.

 

Our Meagan’s Walk Team— these people are amongst those who literally held us up over the last 20 months.  More pictures of the day can be found here: http://www.flickr.com/photos/11952371@N04/

Aimee and I do Meagan’s Walk:


Xavier and Sam take part in the human hug:

April 25th, 2013: Ray and Brad welcome Baby Quinn:

Quinn Elora, two weeks old:

The ornaments, Stella and Quinne:

Stella painting, October 2011:

Meagan’s Walk:


 

 

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Aimee, Mishi, Stella, Sam AND…

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

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

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Due for a Change

 

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

 

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

 

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

 

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

 

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

 

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

 

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

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

 

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


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


In the lazy river with Auntie Heather


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


Happy Make A Wish, Stella!



 

 

 


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Happy Birthday Dear Stella

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Happy Birthday Dear Stella

This time two years ago,  Mish and I were running around, trapped in the madness of planning our child’s first birthday party.  A party that, let’s face it, really was for us given that a one year old has no idea what’s going on at their first birthday party, nor do they ever remember it.  It was a day that we had hoped for and dreamed of long before Stella was born.  Mish and I would often find ourselves sitting and wondering together.  Wondering whether we’d have a son or a daughter, what he/she would look like, sound like, be like and wondering what flavour icing would be all over their face when they turned one.  We all remember those embarrassing photos of ourselves at our first birthday party – cake all over the face, smock dress that was only cute in 1978, wall paper in the back ground with some variation of orange and brown stripes.  These are the photos that our parents covet.  These are the photos that Mish and I set out to get of Stella.  And we did.  65 people attended that party – a number that greatly outweighs any guest list of my birthday parties over the last 35 years.  The party was a hit.  It was fully programmed from start to finish with activities, games, arts and crafts and a song circle.  The food was catered and the icing that ended up on Stella’s face was butter cream.  It took Mish and I a few days to recover from the pure exhaustion of it all.

Today is Stella’s third birthday – a day that much to our pain, horror and disbelief, we never thought she’d live to see.  On Sunday, our family and friends came together to give Stella a birthday party fit for a Queen.  Mish and I woke up that morning with heavy hearts and tired eyes.  Both of us wondering how exactly we were going to get through the next 12 hours.  This day that once seemed so exciting and joyous to us was now held tightly in a vice grip of polarizing and confusing emotions.  Mishi and Stella share a birthday.  Stella wrestled her way onto the planet on Mishi’s 30th birthday and she’s joked about how her daughter had stolen her birthday ever since.  On  the days leading up to the party, Stella was having what we call a “tired” days.  She was drifting in and out of sleep all day and most of her speech was incoherent.  Swallowing was tough which caused frequent spit ups.  They were so frequent that we had to resort to putting a bib on our three year old daughter to protect her perfect skin from getting a rash from her soaked shirt.  The day of the party looked equally as bleak.  She was lethargic all morning and when the time came for her to leave for the party she started to cry.  There’s something about her cry now that breaks our hearts in two with every whimper.  It’s a tearless cry, and the noises that come out of her throat are almost seal-like.

I arrived at Variety Village, which is where we had the party, to help our family and friends set up early.  Variety Village is an incredible and accessible community centre that Stella has frequented her whole life.  Auntie Heather has been taking her clients and students there for years, and it was thanks to her connections that we were able to pull the party together there on such short notice.  As I feverishly ran around getting the party room decorated, Mish, Stella and her dad stayed at home to get ready.

It wasn’t easy for her, but my incredible wife mustered up all the strength she could find within her to take a deep breath and get Stella dressed for the party.  Strapping her contorted body into the car seat in Poppa’s van, Mish pulled herself together and climbed in to sit beside her girl.  Stella cried on and off throughout the 15 minute drive.  I was at the other end waiting for her.  I was nervous – wanting, hoping, needing everything to go well for Stella, Mishi – for everyone.  When the blue van pulled up I could see Stella’s little white teeth through the tinted glass window.  I swung the door open yelling “Stella, it’s your party!”  And there she was.  She was perfect.  Sitting there dressed in pink from head to toe, wearing her favourite hair band that she used to says was for “big girls”, and a shirt with an ice cream cone and her name on it that was a gift from two moms in Texas.  She had a big pink ribbon over her heart that said “Birthday Girl”.  She looked at me grinning from ear to ear and my heart fluttered.  With her eyes like saucers she let out a big “YAY!”  I carried her in and asked her if she was excited to go to her party.  She said “ya ya ya” and wiggled her little body as we walked down the hall.  As she entered into a room filled with balloons, family, friends and the world’s most spectacular birthday cake – she laughed out loud and at that moment, the world stood still.  Her friends arrived one by one and each time a new person entered the room, Stella pushed her chest out and tried to sit forward as if to say “look at me, it’s my party!”

We all piled into the change room to get our bathing suits on.  A change room that I used to dread going into before Stella was diagnosed as it was always a real challenge to get her ready for swimming.  Last year, my biggest problem was trying to get dressed while Stella took her bathing suit off, looked me in the eye and peed all over the bench and the floor, and now it was trying to find a change stall with a bed in it so that I could lie my precious girl down in order to get her dressed.  Oh how times have changed.  She giggled at us as we got her into her bathing suit and smiled all the way to the pool.  When we entered the pool area, Stella smiled as if she was the Queen of the pool.  The staff at Variety Village had pulled out all the stops for Stella.  The pool was a sea of hundreds of brightly coloured plastic balls that danced around with the swirls from the bubble jets.  All of her friends were there and she was happy.  My heart was full – broken, but full.  We got into the pool and her face was beaming as Mish floated her on her back.  She cackled as she tried to blink the water droplets off her eyelashes.  We took turns swimming with Stella and holding her as her little body, that is usually jammed, bent and stuck in positions that she has no control over, was for a moment, weightless and free.  The next hour was filled with laughter, splashing and playing in a big orange kayak that somehow found it’s way into the pool.  Stella took turns with her friends going down the slide into the pool.

After drying off everyone poured into the party room.  Stella sat in her mamma’s arms as the party unfolded.  Balloon’s were getting dragged all over the room, kids were running around and Stella was smiling.  Much to her surprise and total excitement, Stella’s “Uncle” Brad serenaded her with a stomping rendition of “oh Susanna” which he changed to “oh Stella” of course.  Seeing the kind of pure and utter joy that ignites in Stella when Brad sings to her stops my heart every time as my eyes quickly overflow with tears.  Brad’s concert was a hit with everyone and Stella bounced her way through each song.  Then it was time for the cake.  The moment that seemed impossible to me.  It was time for me to light candles on my child’s cake for the last time.  I recruited Stella’s beloved Uncle Tristan to help me carry the cake.  I needed someone to share the burden with me (even if they didn’t know I needed them to).  Biting down on the insides of my cheek was my poor attempt to stop my trembling chin from wobbling off my face while Tristan and I carried the cake, trying desperately not to drop it – as it was a total work of art.  It was a cake in the shape of a cup cake – Stella’s favourite and it was phenomenal just like Stella.  Stella and her big cousin blew out the candles and it was time to cut the cake.  “I did it” I thought to myself as I looked up only to find a sea of swollen eyes.  Poppa Noel bravely played “happy birthday” on his trumpet – a family tradition.

We did it.  We all did it.  Our family and friends came together to help Mish and I give Stella a birthday party fit only for her and I’m proud of us.  When the day was almost over and Stella was getting ready for bed she said “happy birthday” in a faint whisper as she grinned from ear to ear.

Happy birthday, dear Stella.  We are glad you were born.

Stella First Birthday:

Stella’s Second Birthday (playing with some of her new toys):

Stella’s Third Birthday.  A pool full of friends:

Brad serenades our girl:

Stella’s Birthday Cake (thanks Christine!  www.mollycake.ca)

Happy Third Birthday to our most precious girl! 

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Sam, Son

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Sam, Son

 

Stella is stable again this week, which has come as a great relief to all of us.  Maybe it’s that the sun is finally shining.  Maybe it’s a change in the hydrocephalus circling around her brain.  But most likely, it just isn’t her time yet.  She seems to have her own plan, which she is unwilling to share.

I thought I would write a bit about Sam today.  So much of our focus is on Stella, but there is also this wonderful little boy who helps fill the holes in our hearts when we’re sad, and who is becoming his own person, in his own right.  Sam has been with us on every step of the journey with Stella, and though he is too young to understand what is going on around him, his presence is invaluable in keeping Aimee and I hopeful about the future and grateful for each and every day.

When Sam was conceived, he was supposed to be “it” as far as babies went.  Aimee and I always planned on having two kids.  We liked the symmetry of it, and we liked the idea of them being close in age.  I always joked that the most important thing was that if you had more than two children there would be more kids than window seats in the car, and we would lose every democratic vote our family had.  So two it was.

Aimee’s pregnancy with Sam was totally normal and healthy, and there was no one more excited than Stella to have a baby in our family.  We didn’t know it was a boy until 32 weeks along, so we taught Stella to say both the boy and girl name we has picked out.  It was cute to hear her say them and they were our family secret as Aimee and I don’t like revealing names ahead of time  We bought a bunch of books about being a big sister for Stella, and she got obsessed with us reading one called There’s Going To Be A Baby”.  It was double the fun when Auntie Heather revealed she was pregnant as well— and due the same week!  Stella named Autie’s baby “Gunga”, a name that stuck right until Xavier was born.  Stella kept insisting that the baby inside Mommy Aimee was a boy and that Stella would have a brother named Sam, just like in her favourite book series, Stella & Sam by Marie-Louise Gay.  “Sam” was not the name Aimee and I had picked out, but we humoured her and allowed her to refer to him that way in utero.

When Stella was diagnosed with DIPG, Aimee was 5 1/2 months pregnant.  We were not sure that Stella would ever get a chance to meet her sibling, and this is one of the things that made us saddest about losing her.  She was so involved in the pregnancy, so excited about the baby and we wanted her to get to see it through.  When Aimee was 32 weeks we decided to try to find out the sex of the baby, so that we could tell Stella more about him or her, in case they didn’t get to meet.  I was positive it was a boy all along and I was right!  For us, that seemed like a sign.  Stella wanted a brother named Sam, and we decided that was exactly what she would get (although his full name is Samson).  Sam is now 4 months old and Stella is a great big sister…most of the time.  The other times, she is a typical toddler trying to steal his toys, poke his eyes out and push him off our laps.

Right from the beginning, Sam was a lovely baby; much more relaxed than Stella ever was, and more easygoing as well.  He is also an excellent sleeper, which makes it easy to love him at 8am!

Whereas Stella was with me all day everyday for the better part of 9 months, from the very first day, raising Sam has been a group effort.  He is held, watched, changed, bathed, kissed, walked and fed by any number of people each day.  Right from the beginning, Sam was strong and he prefers to stand upright on his feet while you hold his hands as opposed to sitting or lying down.  He has a gorgeous smile with a dimple (no idea where that came from!), a smattering of what looks like brown hair on his head and dark blue eyes.  We sometimes try to guess if his hair will be curly like Aimee and Stella’s, or remain straight.  I wonder if his eyes will stay blue like his sisters, or if they will take on some of the beautiful green colour that Aimee’s eyes are.  He has recently started picking up toys to shove in his mouth.  Although I got rid of Stella’s baby clothes and toys when we found out she was sick (it was too sad to think about seeing someone else with them), there were a few baby toys I found in the attic that I dragged down, and Sam happily shoves them in his mouth and throws them, just like Stella used to.  He has learned to roll from front to back and is trying very hard to roll back to front as well.  He is alert, happy and predictable.

In the days and weeks leading up to Sam’s birth, I wondered if I would be able to love him the way I love Stella— or even if I would be able to love him at all.  I was worried that seeing a healthy baby born from Aimee’s womb would make me angry, because the baby that my body created ended up with this cancer.  I was scared that everything about him— his cries, feeding him, changing him, playing with him, would remind me of Stella and break my heart each and everyday.  I wondered if he would look like Stella (they have the same sperm donor) and if that would be too hard for me to bear— watching him grow up, while Stella didn’t get to.  I asked myself if each of Sam’s milestones in life such as first day of school, birthday parties, graduations, would make me think bitterly about how Stella should have been doing those things too.  I wondered if I would resent him.

I asked myself if my heart could trust the universe enough to love another child again… after it screwed me so royally the first time.

When I first laid eyes on Sam, it wasn’t love at first sight.  But it wasn’t love at first sight for me with Stella, either.  I learn to love people more slowly.  It’s been a mutual relationship with me and the kids— we needed to get to know one another a bit, establish a relationship of trust and respect and enjoyment.  Sam and I are still working on our mother-son bonding, but it’s been incredible to get to know this little person.

Sam is helping to heal me.  He reminds me to sing and smile and be silly even on days when I don’t want to open my eyes and face the morning.  He has allowed me return to some of my favourite “Stella” parks, and turned them from places where I cry uncontrollably, to places that I envision bringing him to as he grows up.  He has given me the strength to return to my mommies group and chat about teething and daycare.  Sam gives me a reason to leave the house and feel the air on my cheeks and the wind in my hair— to feel alive.  Sam demands that I love him for who he is, not because he is Stella’s little brother.  This is imperative to surviving Stella’s death.  Sam allows me glimpses into a time in the past when Aimee and I were ignorant to the realities of broken hearts and broken dreams.  He knows no limits, no cruelty, no fear.  Sam allows me to walk with a baby in a stroller and picture the future.  A future without Stella, but not without love or happiness.

I am excited to continue to learn about my son.  To love him for who he is, and to watch him discover the world.  I will teach him about his sister, but I will not raise him to live in her shadow.  Even if we had 1000 children, we could never replace our Stella, but we would never try to.  “Samson” means sun, and I am positive that he will bring light and brightness to us as he grows up and act as a constant reminder that each life, no matter how fragile or brief, forever changes the world.

Sam, my son.  Sam, son.  Samson.

Sam’s First Day Home, October 2011

 

Stella and Sam

Little Man

Stella at 4 months

Sam at 4 months

 

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