Birth. Day.

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Birth. Day.

April 18th, 2017 would have been Stella’s 8th birthday.  Picturing Stella at 8 is fairly foreign to me.  Her friends who are that age seem like mini adults to me.  They are not generic little toddlers any longer, but fully formed people with likes, dislikes, hobbies, friends, etc.  I can’t imagine what life would have been like “if”.  We would likely have just had Stella and Sam (who would not have been named Sam), because we never planned on having more than two children.  And they would be 8 and 5 now, so we would be in a totally different part of our lives than what we are now.  I still get jealous sometimes of our friends who have the older kids.  It’s not that I don’t love the choices we’ve made and that I’m not happy with our family and our lives, but I feel like I will always have the feeling that we are “behind” somehow.  It’s complicated and hard to explain, but it’s like being a younger sibling and constantly feeling like your older sibling is getting to do more than you.  You can’t run as fast, you can’t stay up as late, you can’t play the same games.  At some point it all evens out, but I can’t help but feel left behind somehow.  Especially now when we have made the decision to start over again with a newborn baby.

My due date for the new baby was April 17th.  There were camps of people that were hoping the new baby would be born right on Stella’s birthday.  That would be so full circle.  So Hollywood.  I was adamant that this baby could be born any day EXCEPT on Stella’s birthday.  I can’t imagine how difficult it would be for a little girl to have to share her birthday with her dead sister.  I didn’t want to have to deal with another layer of complicated grief on that day.  So I proclaimed to the universe that this baby would have its OWN birthday.  I even did a bit of research to find out what would happen *if* your baby was born one day and when you filled out the paperwork online, you put another date if it would be caught. Just in case.

When Stella’s birthday arrived on April 18th, I breathed a sigh of relief that there were no labour signs.  Compared to past years, her birthday was very quiet.  I struggled quite a bit that day.  It was a very strange feeling to be remembering the birth of our first child, our beloved daughter Stella, while 9 months pregnant with our fourth child, another daughter.  Aimee and I had a couple of big cries, and for the most part we just stayed close to home.  We got lots of texts from friends remembering her on that day, and each one made me cry that even without us reminding people of mentioning it, those people whose lives she touched remembered.  Aimee and I visited her tree and brought some timbits and a balloon and candle to mark what would have been her 8th birthday.  It was a little less emotional than it could have been because it just so happened that while we were there two people had parked themselves on her bench and were drinking and laughing and gossiping loudly with one another the whole time we were there.  I thought Stella probably would have thought that was pretty funny, and it definitely kept our tears at bay as the two women sitting there were oblivious to what we were doing and who we were and continued to talk about their shopping trips and boyfriends and sip on their latte’s while we lovingly wrapped ribbons around the trunk of her tree and put up the balloon with #8 on it.

We then picked the boys up early from school and brought them to Chuck E Cheese for dinner.  It was just the four of us until my sister came, and that was it.  No other family or friends were able to come because it was a Tuesday and everyone was working, but it was perfect in its own way.  The boys loved it and Chuck E Cheese was empty, so they thought it was the greatest thing ever.  When we got home my mom and brother came over and sang Happy Birthday to me and Stella.  Then it was over.  A mixture of happiness, sadness, quiet, noise, grief for the past and anticipation of the future.

Chuck E Cheese:

 

Once her birthday was over, our family and friends went on full “baby watch”.  Since this baby was my third pregnancy, everyone—-even the midwife—- expected me to go fairly close to my due date.  But the days past and nothing happened. I was off work as of April 5th, and filled my days visiting friends, shopping, relaxing and enjoying nights of sleep.  “Any baby yet?” texts filled my phone each day.  As the days passed by, our midwife started asking about induction. At 41 weeks pregnant, we agreed to induce a couple of days later if I didn’t go into labour on my own.  The days passed and still nothing, so at 7:00am on April 26th Aimee and I met our midwife at the hospital and prepared to meet our newest daughter.  I actually thought it was a quite civilized way to do things.  With a known date we were able to arrange for childcare for the kids, let our support people for labour know to take the day off work, and prepare the boys for the day their sister would be born.  It really appealed to my type A personality!

Aimee and I just outside the hospital on our way in for our induction:

Labour itself was—-labourious.  Luckily we have the absolute best midwife in the entire world (Christie who also delivered Sam and Hugo), and when the going got tough, she made it all okay.

After a nerve-wracking few moments during delivery when she got a bit stuck and I swore like a sailor, our baby was born and as she was placed on my chest I turned to my dad and said, “I can’t believe I have a daughter again!”.  The room was fairly vibrating with emotion.  Happiness, sadness, relief, joy.

April 26th, 2017 at 6:58pm we welcomed Adele Margaret Bruner-Methven to our family.  Weighing 8lb 9oz and measuring 53cm.

Her name was fairly easy to settle on.  Stella had named both of her brothers after her favourite books.  Sam is from the Stella & Sam book series, and Hugo she chose for her favourite book King Hugo’s Huge Ego.  When it came time to name our newest child, we went right to Stella’s bookshelf again and pulled another of her favourite books, Adele & Simon.  There are 3 books in the series which focus on Adele and her little brother Simon.  Simon is always losing things and the reader has to find in the picture where he has lost the item.  Stella loved finding things and even as her body failed her she would life her shaking arm and smack her hand down on the page where the items were found.

The kids pose with Stella’s favourite books that inspired their names:

Adele’s middle name Margaret is a family name; both the name of my mother and Aimee’s grandmother.  We also like that the initials are AM (Aimee-Mishi)

The boys are delighted with their new sister.  They vacillate between being fascinated with her, and ignoring her completely, which I imagine is completely normal for a 4 and 5 year old.

Adele is one week old today and we are all still adjusting.  My past of anxiety and depression puts me at high risk for postpartum, which I struggled with after both Stella and Hugo’s births.  I’ve definitely been weepy and emotional the last few days.  I’ve had several bouts of “how the heck are we going to balance all of this” breakdowns.  Thoughts of how active the boys are and how much energy they require and whether it’s humanly possible to keep up with the demands of this new dynamic with our careers and at our ages make me nervous.  So I’m being very gentle with myself.  Trying to sleep as much as I can (with the help of my awesome wife), and remind myself that these feelings are normal.

Adele has much darker hair than either Stella or Hugo, and looks like no one but herself which is comforting in some ways.  As our last baby (yes—-she’s it, promise (o;    ), I am working very hard to be present with her.  I have pretty much zero memories of Sam and Hugo at this age.  We were so grief stricken and moved around in a fog.  We had so many people around all the time to hold the babies.  So this go around I am taking the time to really try to enjoy the way her little body feels when she is sleeping on my chest.  I am taking note of the curve of her little nose and her little rosebud lips.  I am stroking her hair and trying to make a memory of how soft it is, and when I’m up with her at night I keep reminding myself that this stage doesn’t last forever and that someday—- we will sleep again.

Christie our midwife came for a visit a few days ago.  She asked how it was going and I unleashed on her a torrent of words about my insecurities and fears about balancing everything.  I said that the past weekend was hard having her and the boys at home, that I felt overwhelmed and Aimee and I couldn’t figure out how to keep on top of the grocery shopping and laundry and making lunches.  I felt tired and stressed.

Christie listened and gave some advice.  As she was putting her coat on to leave, she said, “it’s nice to have you talk about all these completely average and normal fears”.  She reminded me of how with the last two babies we had people dropping food off all the time, people volunteering to sleep over and do all the overnight shifts with the babies, people to take them out during the day.  Now it’s just us trying to figure it all out.  Her observations stopped me in my tracks and I had to laugh.

She is so right.  Instead of being worried about our dying daughter.  Instead of wondering how we were going to wake up and survive the next day weighed down with so much grief and confusion swirling around, our worries this time are the same as almost all new parents.  And we are trying to do it ourselves.  We need to do the grocery shopping, the laundry, the overnights, the caregiving.  We are a “normal” family.  It’s foreign in a way.  Although it’s our fourth child, we’ve actually never done this before.

This is one of the many, many times in my life when I am drawing on the experiences and lessons that Stella gave us.  To try to look at life in tiny chunks when looking at it for longer is too overwhelming.  When the years seem too long, focus on the month or the day or the hour or even the minute until it passes.  To try to find the joy in each and every day.  When I felt overwhelmed at having the boys and Adele home for dinner at the same time, because the boys were fighting and not listening and I needed to feed Adele, I remembered how lucky I am to have three healthy, energetic children.  Then I decided to stop struggling with them and just make it easy on myself, remembering that having ice cream for breakfast once in awhile doesn’t do any long term harm,  I turned on the TV and let the boys sit on the couch and watch it (which they normally aren’t allowed to do in the evenings).  They calmed right down and peace was restored.  When Aimee isn’t home and I can’t bring myself to cook, I make it okay to order pizza.  And I am allowing myself to look into Adele’s eyes and dream.  I’m allowing myself to picture a future with her and Sam and Hugo and try not to be afraid that it will all be taken away from us again.

As we navigate this new normal, as we adjust to this new stage in our lives, I know that Stella’s legacy will help guide me and continue to teach me.  And I will always find her smile in the smiles of her brothers and now, her sister.

Uncle Tristan reads Adele and Simon to Stella in August, 2012:

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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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