Fumbling Towards the Future

Download PDF

Fumbling Towards the Future

One of the comments that Aimee and I get most often is how strong we must be to be living and laughing despite the slow death of our beloved oldest child, Stella.  People ask us how we do it.  The easy answer is that we have no choice, but the longer answer is that having Stella and Sam to look after forces us to start each day.  If we didn’t have them, we would have no reason to get out of bed, no reason to eat breakfast, no reason to force ourselves to act funny and crazy just to get them to smile, no reason to put one foot in front of the other day after day, week after week, month after month.  I often think that having Sam has been such a miracle because, after Stella dies, if not for him, I’m not sure that I would ever bother getting up out of bed or leaving the house again, as I’m certain the pain is going to be absolutely unbearable.  Sam reminds me that even though things feel bleak right now, Aimee and I do have a future together, and a family full of joy that we have lovingly crafted and worked so hard for.  I don’t want to imagine my life without Stella.  It makes my chest hurt, it makes my stomach sick, it makes my jaw clench.  But I don’t have the luxury of tricking myself into thinking Stella will be here forever.  Each day that goes by is another day closer to when she will be gone forever.  It’s a maddening way to live—trying to appreciate the present, and still make plans for the future.

When Stella first got diagnosed, time seemed to stop.  I remember the calendar for July 2011 which had once been full of play dates, school assignments, and dates, was suddenly wiped blank.  Aimee and I were afraid to plan anything in advance.  How could we when we didn’t know what was going to happen to our daughter, and when it was going to happen and how.  We stopped work immediately, both dropped out of our respective school programs, cancelled every single thing we had planned for three months.  But once the shock had started to wear off a bit, once the weather turned a bit colder and the seasons changed, we realized that other people’s lives had started to go on and ours had to as well.  Our son was due at the end of October, and we needed to plan for him…to buy clothes, set up the nursery, assume that he and Stella would get to meet.  It was difficult to do at first, but marked our re-entry into the community we so loved and needed.  Slowly, intentionally, we started to put things on our calendar once again.

One of the hardest things for me to do was go out in public with Sam.  At first it was so hard to be out with Sam and not Stella, that I literally ran from areas where I thought I might know someone.  I cried the first dozen times I walked by the park Stella and I used to go to after daycare.  I bawled the first three times I took Sam to the library Stella used to run around in.  I wanted to kick the tire of every car I passed on my way to the first moms group I attended without Stella.  And when I joined Rainbow Songs a few weeks ago, which I also did with Stella when she was 6 months old, I had to escape to the bathroom for an impromptu cry when everyone sang, “You Are My Sunshine” the very first week (seriously—think of the lyrics, what a sad and horrible song).  But the unexpected bonus of forcing myself to do these things has been small moments of normalcy that creep into an extremely abnormal reality.  There is an inside and outside world, and Aimee and I have been trying to teach ourselves how to live honestly and fully in both of them.  But it’s not always easy.

Even now, whenever I go out I wonder if people are judging me.  I wonder if the people who know about Stella, watch me drinking a Starbucks pushing Sam in the stroller and chatting on the phone and think I’ve forgotten about Stella.  Or, if I have Stella with me, I wonder if people are staring at her and trying to guess what is “wrong”.  Most often, when strangers see me lifting her onto the slide like a rag doll they make a comment about how tired she must be.  And in every conversation with a stranger regarding Stella, there’s a split second when I have to decide whether to just smile and not continue talking, or tell them what’s really going on and then brace myself for the myriad of reactions from shock and pity to discomfort and silence. But I am keenly aware that no matter what someone’s reaction and feelings are, they get to go back to their “normal” life and Stella and I become just a fleeting thought for them, whereas Aimee and I live and breathe it every moment of every day. So I try not to care too much what other people think.

Parenting Stella through her cancer over the last 10 months has had many unexpected lessons.  One of them is that Aimee and I have needed to stretch to the limit our understanding of what parenting is, what it entails, what it’s overall goal is.  And we’ve needed to redefine ourselves, our lives, our expectations, plans and vision of the future.  Even though our lives are nothing that we ever could have even come close to imagining, we’ve realized that parenting is not something that leaves you, even if your style has to change and even if the journey is not as you imagined it would be.  Like it or not, Aimee and I are parents 100% of the time.  We still want Stella to eat healthily and so take the time to blend up broccoli for her, along with the ice cream.  We still want Sam to learn how to put himself to sleep and nap in his crib, so have conversations about sleep training.  We still try to remind Stella about “please” and “thank-you”, even though she can’t say them anymore.  And most of all, even though our dreams have been irreparably fractured, we still want to have the family we once dreamed of.

From the time Aimee and I talked about having children, we always said we wanted two.  Two felt manageable, two felt familiar (Aimee had one sister and I only had one sister until I was 16 and my brother was born), two felt perfect.  We always assumed we’d have two boys.  I’m not sure why, but that’s what we always talked about.  While I was pregnant with Stella, we decided our sons names would be Evan and Finn or Evan and Owen.  We didn’t find out the sex of our baby, so when Stella was born— a perfect package of red-headed, screaming, fury— and most definitely girl, we were a bit shocked.  But we adjusted and were absolutely tickled with our red-headed imp.  Then, when Aimee got pregnant just under two years later, we thought our dreams and our family were complete.

But, as you know, the universe had other plans for us and our family of four.

Even if not everyone vocalizes it, I know people want to know if Aimee and I plan on having another child.  There is an overall feeling that having another baby will somehow help us heal from losing Stella, that it will “replace” her in some way.  But the truth is, we could have 15 children, children who look just like Stella and act just like her, and they still wouldn’t be Stella.  You can’t replace a child that you lost and you can’t cancel out the agonizing grief of the death of one child with the birth of another.  No one is more aware of this than us.

Yet, Aimee and I couldn’t let go of the vision we had of our child having a sibling.  It took a lot of tears, and time, but we’ve finally accepted that Sam and Stella are not going to get to grow up together, they are not going to be the two children that we raise to adulthood and take to soccer practice together, and teach how to swim at a cottage and ground when they cut each other’s hair into a mohawk.  That dream will never happen, no matter how much we wish it.  If we wanted two children, we would have to do something active to get that dream, because we were not going to get to keep Stella.

So, one month after Sam was born, Aimee and I decided to try to do an intrauterine insemination one time with the same donor sperm as we used for Stella and Sam.  It was a crazy time in our lives.  Stella was declining rapidly in the fall, Aimee was completely incapacitated due to her pelvic injury, we were living off of donation money, had volunteers sleeping on a mattress in our living room to help with Sam, and were eating off of the generosity of friends almost every night.  We felt like we needed something happy to distract us from the chaos and stress of our everyday lives.  We weren’t in a place where we could seriously think about having another child, we just needed something to look forward to, something positive to focus on.  We decided to leave it up to the universe.  If we were meant to have another child— this child— it would be, and if not, not.

We inseminated on Remembrance Day.  I went by myself because Aimee was still too injured, was in and out of the clinic within an hour, and headed home on the subway as casually as if I’d just taken a book out of the library.

Two weeks later, we got the news we were pregnant.  Ironically, we got the news the same day we finalized the $12,000 payment for Stella’s funeral and burial plot.  What a strange day that was.

Aimee and I were excited…and terrified.  We already knew firsthand how little control we have over life when it comes right down to it.  We knew that this pregnancy would be emotionally complicated, and that more than likely I would be carrying this child when our first-born died.  It was a different feeling, a different type of pregnancy.  We were sometimes afraid to be too happy, there was trepidation and fear about being judged as completely insane, even by our closest friends and family.  But what kept us from drowning in all these complicated emotions was the knowledge that we have so much incredible love, and have gained so much knowledge as parents, and we want to share it.  We want our future.

So… we are proud and pleased to let everyone know that we are due with our third child this August.

We do not expect Sam or this baby to temper the horrific pain and sadness of losing Stella in such a painful and unfair way.  But we do expect any children we have to benefit from the lavish amounts of love we have to give, and to bring light on the days when all we see is darkness.

Over the last few months Aimee and I have slowly begun revealing our news to friends and family.  We are aware that some people might think it is a mistake.  Everyone is entitled to their own opinion, but we are confident that we made the right decision for us, and are excited to bring another child into our incredible family and community of friends.  Stella is very happy about the new baby and likes to kiss my belly and put her hand on it while she falls asleep.  We love that she is so thrilled at the prospect of another baby in the family, and hope feverently that maybe…just maybe…she might be able to meet this one as well.  But no matter what, she loves him already.  Oh yeah— it’s another boy!

This is a time of great emotional upheaval, but also of healing and hope for the future.  We may not know exactly what our future will look like, but we are certain that it will be full of light, love and laughter…because those are the parts of Stella we will carry with us always and forever.

For life and death are one, even as the river and the sea are one – Khalil Gibran

Stella is delighted with her new sibling to be!


Saying “hello” to the baby we have been referring to as “Flick”.  Short for flicker of hope…and flick for how active he is!:

 Stella waking up from a nap…check out that hair!!!"/

 

Download PDF

Listen

Download PDF

 

Listen

 

Listen.  What do you hear?

 

I can tell you what I used to hear around this time last year.  The phone blaring in my ear.  My toddler Stella’s feet echoing as she ran around in green froggy rain boots— probably not listening to me, probably pulling all kinds of things out of her toy box or the bathroom cabinets.  The TV was probably on CP24 news so we could keep abreast of road closures, weather, top news stories, etc.  Aimee and I would be talking about all the things we had to get done on the short weekend…who was going to do the laundry, grocery shopping, empty the dishwasher, how I would fit study time in, what play date we had planned to help fill Stella’s day and make it a little less chaotic by keeping her busy.  There would be the sounds of dishes clanging as we piled them in the sink, Stella demanding more butter on whatever it was she was eating, the dog barking every time someone walked past the house. It was a whirlwind of dates on the calendar, rushing around in a fruitless balancing act of home, work, school, family, friends.

 

Listen.  What do you hear?

I hear the TV droning on in the background but no one is watching it.  I hear Stella’s steady breathing as she is tucked under my left arm on the couch, a sprinkling of sweat on her nose where I always thought the freckles would come when she got older.  I hear an army of birds chirping in the tree outside.  A car door slamming.  Aimee is quietly singing something to Sam as she wanders around the house, moving piles of unopened bills from one side of the room to the other.

Listen.  What do you hear?

I can tell you what I don’t hear.  I don’t hear the soft smack of of bare feet running on the wood floors.  I don’t hear the crashing of toys being picked up and moved around in the toy box.  I don’t hear the phone ringing as I try to organize multiple play dates.  I don’t hear Aimee and I breathlessly trying to catch each other up on our days, what needs to be done, our plans for the next several days.  Aimee and I spend a lot of time in silence  now, adrift in our own thoughts and at a complete loss as to what to say to one another.  We express our feelings through tears, gentle pats on the knee, hugs as we pass each other in the kitchen.  Laughter and smiles too, on the many occasions we are able to appreciate the everyday wonderment of our lives, and our amazing children.  But a lot of the time we just sit quietly together.

 

This week, despite a good week for Stella in which she enjoyed incredible activities like horseback riding, swimming, visits, feeding birds, a trip to the farm and music therapy, there has been one thing missing.  Her voice. Even though Stella’s speech had been declining for some time now, it seems that even the most basic words…”yes”…”no”…”more”, and worst of all, “mama” and “mommy”are now gone.  Of all the things that have been so cruelly taken from Stella, for me this has been the hardest to deal with.  It is heartbreaking to watch her mouth move, knowing her brain has the exact right words she wants to say, but her tongue lolls uselessly back and forth and the only sounds that come out are high pitched animal-like whines.  It’s awful.  There is no other way to describe or sugar-coat it.  I imagine it akin to being buried alive, where your brain is working perfectly but you are trapped and unable to move or tell anyone where you are.  Aimee and I can each only stand by, watching her struggle to speak for short periods of time, then we have to change who is sitting with her because it quickly becomes unbearable.  We try our best to distract her, to make her laugh, to guess what she might want.  But it makes your chest ache with how hard it is to listen to the silence where her chit-chat used to be.  It makes your eyes burn with unshed tears when you see Sam sitting and happily babbling while his sister stares at us, desperately trying to communicate with her eyes and facial expressions.  I hate this part.  It hurts.

Now Aimee and I often fill the silence by trying to remember all the things Stella used to say to us.  Her first word was “dog”, and she would point to Lucy and say “dawd” then scream with laughter.    She called dandelions “candy-lions”, and often referred to Aimee as “other Mommy”.  She called the two parks by our house “Sandwich” (real name: Aldwych), and “Holy Cow” (real name Holy Cross).  Her grey cat doll was “Fluff-ellie”, her corduroy one was “Pink Kitty”, and one of her favourites she referred to as “Little Arin”, after her friend Arin.  She named her first talking dolly “Rocco” and her second “Cinderella”.  She knew all the lyrics to the Golden Girls theme song as well as all the characters names, and called the show “Thank-you for being a friend”.  She used to wake us up every morning, 7 days a week, at 5:15am by standing up in her crib and shouting “Mamaaaaaa, where are you????  Mamaaaaaa I’m awaaaaaake!”.  For breakfast she asked for “crunchy cereal”.  When she was put into bed and wasn’t ready to go to sleep, she would cry and call out the names of every single person she knew tearfully, including her friends and their parents begging someone—anyone to come and get her.  She thought Halle Barry  on TVwas our friend Jean, and Sharon Osbourne was her Tutu.  When we visited Riverdale Farm, she plugged her nose and said, “Piggies, you stink!  You should pee in the potty!” and she would say when she saw the chickens coming, “uh-oh, now Mommy is going to freak out” because she thoroughly enjoyed Aimee’s reaction of jumping on benches and trying desperately to shoo the chickens away from her ankles.  If she didn’t like someone, she would simply point her finger at them, narrow her eyes and say loudly “I don’t like you!”.  When she got in trouble, if we asked her why she did something she would blink her eyelashes a few times, spread her arms wide open and say, smiling, “Because…because…because I JUST love you!!!”.  She was vivacious, talkative, spirited, full of life.  She is still all these things, but now Aimee and I fill in what we think her thoughts and words are for her.  Just like with a baby, we will say to her, “Stella say thank-you”, but then knowing she can’t, we continue by saying on her behalf in the first person, “thank-you Christina for coming to play with me today”.  I wonder if she gets annoyed when we do that.  Sometimes when people come in I can see her narrowing her eyes and moving her hands back and forth.  I know if she had a voice she would be telling our visitors to “go away!”.  But because she can’t say it, Aimee and I will patronizingly say, “Yeah Stella, are you saying hi to Kayla?  Hi Kayla!  Thank-you for coming to see me!” in order to protect the visitors’ feelings.  Stella sometimes glares at me when I do that to her.  And I feel badly, knowing that her silence must be stifling for her and what she really wants me to say is, “Stella doesn’t want you here.  Get out”.

I am upset that she has been cruelly quieted by this tumour.  I wonder how long Aimee and I will last suffering in this silence with her.  Today I was thinking about how, despite how honest Aimee and I have tried to be with everyone, despite the blog, confiding in friends and family, crying loudly and often, despite all that— most of our experiences remain unsayable.  We wrestle everyday to express thoughts and emotions that are, ultimately, indescribable.  Our life experience over the last 10 months is largely beyond words, and so exists in a type of paradox balancing emptiness and wholeness, the spoken and the unspoken.

Listen.  What do you hear?

I am now listening to music as I finish typing this entry.  I am listening to my newly discovered favourite band, “The Stellas” (of course!).  They have a song called In This House, which is almost too close for comfort.  But it starts:

All is quiet

In our humble home.

Lonely,

But I’m not alone

Cuz I can hear your laugh in every room…

(You can listen to the song here, if you want: http://www.youtube.com/watch?v=3CEAOY3ZIKQ)

And I realize that even though I miss Stella’s voice, and cry whenever I conceive that I may never hear her say “Mama” to me again, we still have the sound of Stella’s laugh echoing off our walls and our hearts.  She can’t talk, she can’t cry tears— but she still laughs. Pretty amazing.

This reminded me that if you listen to a really good piece of music, you soon realize that the notes are part of the song, but the pauses and silences between the notes are just as important to the artistry of the piece.  The vibrations, the pitch, the tone, the duration of breaths taken all combine to create the full experience of form, harmony, and expression of emotion.  The music wouldn’t be music without the silences in-between notes.

Listen.  What do you hear?

I hear my heart, breaking and healing with every beat.  I hear all the memories of the last three years with Stella competing for airtime in my mind.  I hear Stella breathing steadily, and in the half-second of silence between the inhale and exhale, I hear the word “listen”.

 

These pictures from the last week have no words, but I bet you can understand them perfectly anyhow: 









Download PDF

Happy Birthday Dear Stella

Download PDF

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! 

Download PDF

Growing Pains

Download PDF

 

Growing Pains

 

Just like the Doctor’s told us 9 1/2 months ago, the tumour growing in Stella’s brainstem has slowly and steadily taken away her physical independence.  At the end of August she lost the ability to walk or put weight on her legs.  By October she couldn’t sit up anymore, or roll over by herself.  November came and she lost the ability to have bowel movements unassisted.  In December, we noticed her arms were not controlled any longer.  In January, her speech and eyesight started to decline.  In February she lost the strength to hold her head up. In March she started not being able to eat anything but liquids and soft foods.  In April she began choking on her own saliva, losing even the ability to swallow her spit.  Today she seemed unable to speak at all.  Even the ‘yes’ and ‘no’ she had managed to squeak out the last several weeks was gone.

 

But, ironically, while parts of her have disappeared, in other ways she has grown so much.  The baby fat cheeks and curly hair have given way to a little girl’s thinner face, and hair back in a pony tail.  In fact, her hair has gotten to long that when we bathe her and the curls straighten, it reaches down past her shoulders.  She has gotten so tall that she is in 4T pants, though she is not yet three years old.  When she is sleeping at night, I sometimes play a game where I pretend she isn’t sick, that she won’t die, and I marvel at how beautiful and perfect she looks.  It always reminds me that even though so much of Stella has been taken away, she is still here.  And in the last three months especially, she has proven to me time and time again how very present and ready to live life she truly is.

 

Recently I realized that I sometimes let my own protectiveness of Stella and my own views of what she “should” or “should not” be able to do, colour the activities we do on a daily basis.  But Stella keeps challenging my perceptions of her abilities, and with each lesson she teaches me, I can literally feel my heart expanding and collapsing all in the same breath.  I keep telling myself to be brave, but I can’t always do it.  A few weeks ago, I realized that COURAGE is nothing more than tiny pieces of hard-earned grit, all glued together with hope.  And with that in mind, I’ve been able to pay attention to the lessons right in front of me.

 

For a few months, I told people Stella wasn’t up for play dates.  I was super-sensitive to the fact that her friends could run around, and talk, and go potty and she couldn’t.  I never wanted her to compare herself to them and wonder why she couldn’t do those things anymore.  It broke my heart to remember how she used to run and jump and play, just like them.  I didn’t want to go somewhere and compare my kid to the other ones, so I tried to shelter her and keep her home with me, where I knew she was safe and not judged.  But Stella missed her friends.  So, I started doing a few selective play dates.  And I quickly learned something.  The other kids didn’t see Stella as someone who couldn’t do the stuff they could do.  To them, she was still their friend and they just wanted to play with her.  Without begin guided or told by adults, Stella’s friends seem to instinctively know what to do to interact with her in meaningful ways.  They don’t ask to play chase or run around in circles with toy shopping carts.  It tuns out, Stella and her friends can play just fine with each other.  They can sit on the couch and read books, paint fingernails, get out the Doctor’s kit and take turns listening to each other’s heartbeats.  They can feed dollies, pull the basketball net up to the couch and take turns throwing it.  They can go down the slide and “catch” each other at the bottom, or play hide and go seek in the playhouse (Stella hides, and her friend seeks her).  Most importantly, irregardless or ability or language, Stella and her friends connect and enjoy each other’s company. It is beautiful and heartwarming and stunning in its simplicity.

 

For a few months, I didn’t want to take Stella to the park because I kept thinking that there was nothing she would be able to do there anyway.  I didn’t want her to feel badly that the other kids were running around.  I didn’t want to have to deal with the stares from other parents wondering what is “wrong” with my perfect daughter.  I didn’t want to notice that when you bring your child to the park, and they are a bit different looking, other parents don’t engage you in the idle playground chit chat of asking your kid’s age, daycare status, name, where you live, etc.  I thought I was protecting Stella by staying away from the local playground, but it turns out I was protecting myself.  And Stella wanted to go to the park.  I was nervous, but I took her.  It turns out she CAN go down the slide, I just need to go down with her.  It turns out she CAN go on the swings, I just need to sit her on my lap.  It turns out I was right that mostly I would just get sideways glances from other parents with no conversation, but I don’t care one bit.  I’m there to make Stella smile.  And when we’re swinging weightlessly in the air, she giggles with glee and abandonment and, in that precious moment when the sky gets a little closer to us, nothing else in the world matters.

 

For a few months, I didn’t want to take Stella swimming.  I thought the water would bother her sensitive skin, that she would be scared of the crowds.  I worried that she would feel overwhelmed and out of control in her body.  But two Saturday’s ago, my sister asked if she wanted to go swimming and her entire face lit up.  She hasn’t been swimming since early September, I was surprised she remembered what it is.  I kept expecting Stella to change her mind, but she had a huge smile on her face gazing out the window, the entire time we drove to the pool, and when we arrived she seemed to recognize Variety Village where we used to go.  She smiled and laughed in the pool and I think the feeling of freedom she experienced made her feel good.  We splashed Auntie Heather, we twirled and whirled in the water, we sank a boat.  I held her in my arms and she floated weightlessly.  It was magic.

 

For a few months, I didn’t want to remind Stella that she used to draw and paint and colour.  I thought the fact that she can’t see the colours properly, can’t communicate which ones she wants to use, can’t hold a paintbrush or pen in her hand, would be discouraging for her.  I didn’t want her to remember that she used to be able to do something— something she loved— that now she can’t.  But two months ago, Stella wanted to paint.  I put her in her smock, sat her on my lap, put my hand over hers and helped her dip the paint in and draw the paintbrush across the page.  Her head dipped down, and drool smattered on the paper.  It made me sad.  She kept trying to bite the paintbrush, and I kept admonishing her and reminding her that we don’t eat paint or paintbrushes.  Then she finally managed to jerk my hand up to her mouth and clamped her teeth onto the paintbrush.  She leaned her head down to the paper and started to paint.  And she smiled.  She had a huge smile.  She was proud of herself.  I was proud of her, too.  Now whenever people come over, she wants to paint with them.  Friends, young and old, gamely put paintbrushes in their mouths and let all the colours of the rainbow paint a picture of determination and wonderment.

 

For a few months, I avoided taking Stella out to our backyard.  I didn’t want her to see the slide she could climb the ladder to last year, and the playhouse she delighted in running in and out of, slamming the door behind her.  I was afraid she would ask me to do something that I knew she couldn’t do.  I wanted her to forget about the backyard and all the time we used to spend out there.  The bushes she picked raspberries from, the lawn she kicked her soccer ball across, the table she sat at when we had family BBQ’s.  But then I showed her the playhouse three weeks ago from her bedroom window, trying to distract her from something else.  She instantly smiled.  So I took a deep breath and carried her outside.  And she was happy.  With some work, she can still sit in her little Muskoka chair in the playhouse.  She still laughs each time you close the door and then open it and with great enthusiasm, say “boo!”.  She doesn’t need to climb the ladder up to the slide, she just needs you to put her on top and hold her up while you slide her down.  She thinks it’s hilarious to watch us throw other items down the slide so she can “catch” them.

 

The zoo, the farm, walks to Starbucks, visits to friends and family, Easter egg hunts.  Stella can do anything she wants.  My job right now is not to limit her, to protect her or to project my own fears onto her.  I think that I have spent the last 9 1/2 months trying to live each day as if it were Stella’s last, but inadvertently I’ve stifled her somewhat.  Because Stella isn’t living her life in the same way.  She doesn’t wake up each morning like I do and wonder if maybe today will be the day she dies.  She has no concept of this type of thinking.  Stella is living the way she always has— fearlessly, and with no thoughts of failure whatsoever.  She has probably never said to herself, “I can’t do that”.  Why would she?  Failure and fear are learned behaviours, and Stella never learnt them.  So she decides she wants to do something, and she does it.

 

I never knew growing pains could hurt so much, and literally stretch and expand all the parts of your mind, body and soul.  But to truly grow, you have to be willing to feel the pain, knowing that at the end you will be better for it.  I have to let Stella’s joy scream across my heart, and drown out the pain I feel for myself because she is making me a better person by showing me that “can’t” is not an option.

 

And so, even though it hurts, we both continue to grow.

 

And the day came when the risk to remain tight in a bud was more painful than the risk it took to blossom“- Anais Nin

Easter cuddles with Auntie Heather:

Stella can play ball:

Stella can play with her friends:

Stella can go down the slide: 

Stella can swim:

Stella can paint:


Download PDF

The Birthday Blues

Download PDF

The Birthday Blues

 

Sometimes I feel as though, recently, every time I want to feel sad and cry, Stella won’t let me.  I refuse to show sadness in front of her because I want her to know how happy she makes me, and I want her to feel safe and as though everything is under control, even though day by day she is losing her abilities and her body is betraying her in the worst way possible.  When I feel my eyes filling with tears that threaten to spill over, I give Stella funny belly kisses to give myself a minute to compose, then (often with a shaking voice), I start to play with her and will do anything and everything it takes until I see a little smirk slowly appear on her face. By the time she is smiling, I am too. Once again, she is the one who is teaching me how to exist right now.  I could easily be sinking—sometimes I want to— but she won’t let me.  Every time I want to put my head down and sob, she shows me just how much life she still has in her and it forces me to move forward and keep growing and laughing with her, even when it hurts.

 

This past week, Stella agreed to go swimming for the first time since September—and she LOVED it.  I was shocked at how well she did in the water.  She has also been helping to feed Sam and Xavier their solids in the morning.  She delights in sitting on the front porch and feeding the birds everyday (this morning she even gave them Timbits to try).  She hosted her friend Flora for a play date, and the girls played together just as exuberantly as ever. She enjoyed a visit from our friend Catrina and her army of dogs.  She came to Church with my sister and I on Sunday, and smiled at the music and whipped her palm at my head for Palm Sunday, smiling each time she connected with my forehead.  I’ve mentioned it before, but it’s just such a huge lesson for me— Stella has no idea that she supposedly CAN’T do so many things, because she is too busy doing them to notice.  Even today at the library, she was able to do all the things she used to do when she was able-bodied, just with a lot more help from Aimee and I.  But the smile was the same as a year ago and the activities she wanted to do were also the same.  She has always been fearless, but today I realized she is also boundless.

 

You’d think that having all these experiences with Stella recently would make me super excited to celebrate her birthday in a few weeks.  You’d think that but…you’d be wrong.

 

As Winter in Toronto has turned to Spring, an eerie familiarity has been creeping up on me.  The sun is out.  The first flowers– daffodils, tulips, iris’— are popping out in peoples yards.  The stragglers have finally taken the last of their Christmas decorations down (by stragglers, I mean Aimee and my dad).  In my world, warm weather and rainy days means more than Spring.  It means the start of “birthday season”.  This is when, one after another, several people celebrate birthdays.  It starts with Gracie at the end of March.  Then in mid-April it’s my birthday, and Stella’s.  At the end of April comes Auntie Juju.  Then Stella’s friends.  She is one of the oldest in our group, but one by one they will all celebrate birthdays.  I’ve already gotten a couple of very respectful invitations to kid’s parties— Stella’s friends will celebrate in March, April, May, July, September, October…

 

As these dates approach, I find myself living in a constant state of dread.  I’m scared.  I couldn’t bring myself to go to Gracie’s family birthday party at her house a couple of weeks ago, even though Aimee and Stella and Sam attended and had an incredible time.  But I just couldn’t do it.  Aimee said that even though it would be hard and sad for her, she wanted to be there for Gracie.  I wanted to be there too. Gracie is like another daughter to me, I completely adore her, but I felt like if I went I would just cry and cry and cry and didn’t want to ruin the day for anyone.  Cry because Stella and Gracie were supposed to be best friends for life and grow up together and be at one another’s birthdays until they turned 100.  Cry because my own daughter would never get to celebrate a fourth birthday.  Cry because I was jealous.  Cry because I was angry.  So I stayed away and cried at home instead.  And then when I found out what an amazing time Stella had at the party, I cried because I missed it.

 

And that is my current problem.  I want so badly to give Stella a fun birthday, to see her smiling with a cake and friends, but if I do it I’m afraid my heart will break and I won’t be able to contain myself.  I’m afraid what should be a celebration will end up being another thing to mourn.  And yet if we don’t have a party for our girl, I’m afraid I’ll miss out on a really incredible moment in Stella’s life.

 

All of a sudden, birthdays feel impossibly hard.  I wonder if they always will be.

 

What other day in the year than a birthday are you supposed to celebrate all the incredible and wonderful things that someone is, all the things that they mean to you?  At what other day do you remember so clearly and vividly that initial incredible and magical moment when you first laid eyes on your child?  The awe and shock and overwhelming feeling of love that washes over you like a warm bath.  What other day can you recollect how time stood still the instant you looked into their eyes and said, “I’m your Mama” and smiled and had the realization that this tiny person was going to be in your life forever and forever and change you in ways you couldn’t even fathom five minutes earlier.  When else, but on a birthday, do you reflect on how far you’ve come, your goals and dreams for the future, your excitement for all that is to come.  For me, my birthday comes with an extra complication because Stella and I share the same birthday.  She was born on my 30th birthday and I know that it will forevermore be a special bond, and a special burden for me.

 

In the past, birthdays have been something I relish.  I never understood people who moaned about getting older.  I always thought that if you were happy with yourself and your life and what you’d accomplished there was no reason to be depressed.  But this year…this year when I think about birthdays, I just feel sad and empty.  It feels cruel.  And though Stella’s birthday is indeed something to celebrate, I can’t help but feel upset that it is assumed by everyone—including myself—that what we are celebrating is simply the fact that Stella is still alive on a day they said she would never see.  We are not celebrating her growth and looking ahead excitedly to the next year.  It leaves a bitter taste in my mouth.  And it makes me feel guilty, too.  I wish I could put my own feelings aside and just embrace the day, celebrate Stella the way she deserves and give her back a fraction of the joy she has given me these last three years.  But something is making it hard for me.  Perhaps the idea that this is “the last” of something, just like it was “the last family holiday” at Sesame Street Land this past summer, “the last” Christmas four months ago, and now, “the last” birthday for Stella.

 

Maybe that’s the problem— birthdays are supposed to be about celebrating something beginning and something continuing, not something ending.  Not “the last”.

 

And maybe the reason I don’t feel compelled to make a big deal about her birthday is that I feel like we have celebrated her every single day for the last 9 months.  I don’t need a day to honour her and tell her how special she is to me, because I do it all the time.

 

And maybe this isn’t “the last”, because I plan on continuing to celebrate her and think about her and honour her for the rest of my life.

 

Maybe I don’t want to do a formal birthday celebration because I believe that  the more I can celebrate her all the time, the more there will be to celebrate.  She celebrates her life everyday, not just one day, and I want to learn to live that way too.  Because Stella’s life hasn’t been about waiting for the storm to pass…it’s been about learning to dance in the rain.

Stella and Sam share a couch cuddle:

Special times with Uncle Tristan:

Sam and Xavier enjoying their newfound solid foods:

Stella plays with Catrina and the dogs:


Download PDF