Monday Monday- Can’t Trust That Day

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“Monday, Monday. Can’t Trust That Day”

– Mamas and Papas

 

It’s not that, five months after Stella’s death, I think that I’m “fine”.  Far from it.  But I do believe that I’ve been lulled into a sense of existing recently.  I miss Stella everyday, but Aimee and I are busy and so we continue to live full lives.  She is working, I look after Hugo and get Sam off to daycare, go to school, deal with the laundry and dishes and shopping, etc.  We have dinners with friends, playdates, trips to the library and farm.  Living without Stella hurts, but it’s often a numb type of hurt.  A heartache that just won’t go away, so you learn to live with it.  You learn to not shed your tears around people because it makes them uncomfortable, learn to laugh even though it feels hollow to your ears and learn to look forwards instead of backwards because life is pushing you that way no matter how much you fight it.

 

So we are doing it.  Picking up and moving forward with our lives and our dreams and hopes for the future.  Sometimes I am caught in a moment where my brain begins its repetitive song, “My daughter died.  My beautiful, lively, curly-haired, funny daughter is gone from me forever.   How did this happen?  Where is my Stella?  Whose life am I living?”

 

It’s only been 5 months, but so many weeks and holidays and moments have passed without her already that the sadness just feels normal.  So, last week, when Sam threw up on the weekend and so did Hugo, it didn’t really register as too big of a deal.  Chalking it up to a stomach virus, and waiting with baited breath to see when Aimee and I would be struck down with it, we shrugged it off.

 

Sam recovered quickly, but days later Hugo continued to vomit off and on and then spiked a fever.  After a couple of days of waiting for it to go away on its own, we began talking about if we should take him into the Doctor.  I’m always a lot more reluctant to take kids into the Doctor’s office than Aimee is.  All I can think about is how kids get small and minor ailments all the time that generally go away on their own with a bit of Tylenol, how difficult it is to keep them occupied as you wait for the Doctor, how miserable they and you become as they are poked and prodded.  It’s such a chore.  But Monday night, “Monday, Monday” after several days of Hugo showing no improvement and his chubby cheeks starting to hollow out a bit, I relented and with a huge sigh Aimee and I packed him into the minivan and drove him to a local walk-in clinic.

 

The Doctor who finally saw us had very broken English; so many of the words that he spoke were completely lost on Aimee and I.  But a few of them registered.  My brain heard, “fever”-“too high”-“emergency room”-“if meningitis not a second to lose”-“too high now”-“very sick”.  I swallowed and tried to clarify what he was saying to us.  “Do you mean we should take him to Sick Kids emergency right now?” I asked, my mouth dry.  He looked at me and shrugged, “sure”.  Sure.  Sure????  Didn’t this man know that the last time I took one of my children into Sick Kids Emergency, I was told she was going to die!!!!!!???  Of course he didn’t know.  As the Doctor’s words registered with me, I felt the ice cold blanket of raw fear envelop my body.  I began to tremble and hot tears collected behind my eyelids.  The Doctor looked at me, probably thinking I was a lunatic over-reacting mom, and said “sorry to worry you but he very sick.  Fever too high”.  I nodded, not trusting myself to speak as I was afraid I would scream all the hysterical screams I’ve been swallowing for the last two years.

 

Aimee and I grabbed our baby boy and literally ran out of the Doctor’s office, both of us lost in nightmares of the past.  I was nauseous and dizzy.  I was crying, panic-stricken, frenzied.  I felt so helpless and frustrated.  I just couldn’t understand why we could never do anything for our sick children.  What if something happened to Hugo?  What if he died?  I couldn’t stop my brain from jumping to horrible conclusions.  I cried and blubbered in the van as we raced towards home struck anew with how helpless we are as parents to do anything for our children if they are hurt or sick.

 

In that moment, I knew that I couldn’t go back to Sick Kids.  Couldn’t go back to the same emergency room we had sat in with Stella, watching TV and impatiently waiting for Doctors, worried about getting back to work and expecting them to tell us we just needed to get some antibiotics for her ear infection so we could go home.

 

Aimee was upset too, but because I was in such rough shape she took on the “strong” role.  We always seem to be able to balance out when one of us is feeling sad or overwhelmed.  She offered to go to Sick Kids and called her father to go with them.  I was tortured.  I was so upset and felt so guilty that I couldn’t be there with my sick baby, couldn’t take him to the hospital to get the help he needed.  But I was totally paralyzed with the fear and horror of “what if’s”.  But the guilt of not being able to look after Hugo when he needed me ate me up inside, twisting and tearing my insides, a storm of horror.

 

At home, Aimee quickly packed up a diaper bag and waited for her dad to pick her and Hugo up.  I called my sister and told her the update.  She came right over, and both of us sat together in the bathroom crying.  My dad came running over as well when he got the news, and though he was his usual calm self on the outside, I saw fear in his eyes as well.  We were a mess.  All lost in our own thoughts of Stella and Sick Kids and life and death.

 

Aimee left with her dad and Auntie Angie rushed to Sick Kids to meet them.  We all huddled and worried and waited.  I wandered around the house like a ghost, tortured that I was at home and wanting so badly to be with Hugo and Aimee, but literally paralyzed by my fear.  Sam was running around but I couldn’t even put him to bed because I was so incapable of functioning.  He was eating pizza with my dad and Heather and Daniel and Xavier and I at 10:30 at night.

 

Finally, after taking some of my anti-anxiety medications and getting Sam to bed, I crawled onto the couch and my dad held me as we watched the old black and white Marilyn Monroe film, “Some Like it Hot”.  I was beyond exhausted, but sleep wouldn’t come.  Hugo-Stella-Sam kept tumbling through my head.  I began to wonder why Aimee and I had chosen to have children when we couldn’t keep them safe.  Couldn’t keep them healthy.  I was so defeated.

 

At around 1am Aimee called to tell me that they had determined Hugo had a bladder/UTI infection and with a course of antibiotics he would be fine in a few days.  They were on their way home.  The relief that washed over my body was palpatable as some of the tension snaking through my every muscle released.  Within 15 minutes I was sound asleep, trapped in a dreamless black hole of fear, guilt, sadness and relief.

 

Aimee told me later that being at Sick Kids with Angie and her dad was very triggering and difficult for her.  That every second her mind was reliving being there with Stella.  The gift shop.  The waiting room.  The smells and sounds.  She said it was awful.  She said she didn’t think I would ever be able to go back there.  She doesn’t know if she can ever go back either.  She has been crying more often and reliving it over and over again.

 

Hugo has perked up considerably since Monday, and life has begun to pick up its regular pace again. 

 

But Monday reminded me how scarred I still am— how scarred we all are.  My entire family is so traumatized by what happened to our Stella.  Each of us gets up in the morning and goes to work or school or out with friends and we all make small talk and smile and tell people how grateful we are to have Hugo and Sam.  And it’s not a lie.  We are living genuine lives. But just underneath the surface, not even a millimeter away, are gaping, raw, bleeding scars that crisscross every piece of us and are revealed easily with a simple glance at a butterfly, the light of a birthday candle, the sound of a giggle, or even a baby’s fever.

 

I often tell people not to be fooled by appearances, that despite what they see, we are not okay.  But in this case, I really feel like I fooled myself.  I got so busy with school and the boys and my friends that I pushed the hurt and fear away.  But on Monday it all came rushing back and I remembered anew how tender the wounds of losing Stella still are and how far we have to go. 

 

“On Pain”

 

“Your pain is the breaking of the shell that encloses

your understanding.

 

Even as the stone of the fruit must break, that its

heart may stand in the sun, so must you know pain.

 

And could you keep your heart in wonder at the

daily miracles of your life, your pain would not seem

less wondrous than your joy;

 

And you would accept the seasons of your heart,

even as you have always accepted the seasons that

pass over your fields.

And you would watch with serenity through the

winters of your grief.

 

Much of your pain is self-chosen.

It is the bitter potion by which the physician within

you heals your sick self.

 

Therefore trust the physician, and drink his remedy

in silence and tranquillity:

 

For his hand, though heavy and hard, is guided by

the tender hand of the Unseen,

 

And the cup he brings, though it burn your lips, has

been fashioned of the clay which the Potter has

moistened with His own sacred tears.”

 

– Kahlil Gibran, “The Prophet- On Pain”

Daniel, Xavier and Sam eat pizza at 10:30pm on Monday


Xavier at the park:


Hugo is all better!


Spring picnic with Kari:


Miss you, Stellie:


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The Red Car

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The Red Car

“Dont’ postpone joy until you have learned all of your lessons.  Joy is your lesson.”- Alan Cohen 

Have you ever been driving somewhere and completely out of nowhere, another car cuts you off and speeds away?  If you drive in or around Toronto, I am positive you have experienced something like this.

So, picture yourself on a stretch of road somewhere, and you’re driving happily along, maybe humming along to the radio and admiring the clouds in the sky when all of a sudden a red car screeches up behind you.  You see the driver in your rearview mirror and they are squinting in concentration, looking earnest and leaning over the steering wheel.  Suddenly, the car pulls out behind you and darts in front, cutting you off.  You probably imagine yourself being annoyed or even angry with that driver.  Maybe you curse and swear and put yourself in a bad mood about it.  I’ve been a passenger with several driver’s who would probably shout an obscenity out the window, maybe even try to chase the red car and catch up to the driver just to make sure they SAW the middle finger being waved at them.  You might continue your drive stewing the whole time over that *expletive* driver in the red car, getting grumpier and grumpier about it, convinced that person was a jerk just out to get ahead of your car and be obnoxious about it.  That red car has ruined your mood and your day.

But what if you had additional information about the driver of that car?  What if just before you got cut off, the announcer on the radio told you that there was a red car driving along the same road as you, and that the driver was rushing home because they had just gotten word that their house was on fire.  Or, that there was a red car speeding along because they just found out their son had fallen off his bike and was headed to the hospital.  Or the driver’s spouse had just had a horrible heart attack.  You probably wouldn’t be as upset, would you?  You probably would be worried for that person and perhaps even think as the car sped by you, “Gee, I hope everything is okay”.  And then you wouldn’t be swearing or getting all angry in your car at all.  Instead of reacting with anger, you likely would have reacted with empathy and caring.  This story was told to me at a retreat I went to several years ago.  The point of the story is that we don’t know why the red car cut us off, but human beings tend to assume it’s for no good reason, resulting in a feeling of anger and frustration.  But we don’t really know why certain things sometimes happen, so maybe we would all be happier people if we trained ourselves to believe that the red car was cutting us off for an important reason, rather than assume it’s just to piss us off.

I’ve been thinking about this story a lot lately because I’ve been reading a book recommended to me by Aimee’s sister Andrea (aka Andge/Angie), and her partner Julia (aka Juju) called “Starting from Where You Are” by Pema Chodron, that is about trying to retrain your brain and give up on that ridiculous notion of being in control of anything.  Since Stella was diagnosed, I’ve been reminded again and again and again how little control we truly have, yet I continue to look for it around every corner, hoping against hope it will come back to me.  Control is the greatest illusion that we human beings operate under.  The words “should”, “must” and “expect” give you false security that you have the ability to change things, or the right to expect that because you’ve done “the right” thing, life will be kind to you.  So when Aimee and I were told that our beautiful, perfect, energetic and intelligent daughter was going to die and there was nothing that could be done about it, depression, rage and overwhelming anxiety quickly followed.  It has taken 15 months of growth, fear, pain and despair for me to realize that I have absolutely no choice but to surrender to the path life has put me on.  When the things I ran to for safety and security could no longer help me, I had to surrender to what is, not what I want it to be.  As Pema Chodron writes, “Undertaking the journey to get some ground under our feet, is completely missing the point”. The real work begins when the ground has shifted so drastically that it cannot be counted on at all.

In the last few months, Stella has continued to decline, although it is at a slow pace that, in many ways, allows both she and us to adjust to the new realities.  Our darling daughter has almost no physical abilities left whatsoever.  Her body is like a limp rag doll at all times, she cannot utter any discernable words any longer and her body makes even the most basic tasks (pooing, sneezing, chewing, moving her eyes), onerous for her.  Her left eye has started to flop to the side, yet another sign that the tumor continues to grow and increase the pressure in her brain.  She smiles rarely, but her eyes remain expressive and she uses her tongue to let us know what she needs—which nowadays seems to be physical closeness and comfort.

My life is completely unrecognizable, even from four months ago.  It takes the entire morning just to complete basic things for Stella.  She wakes up and we carry her in our arms to the change table where we gently get her a new diaper and dress her for the day.  We put Vaseline on her cracked lips, add eye drops to her dry eyes (they’re dry because the tumor prevents them from closing all the way, even when she’s sleeping), and use a warm washcloth to wipe the hardened drool from her mouth.  We then give her some of her medications in suppository form and carry her to the couch where we try to arrange cushions and blankets to support her limp frame properly without putting too much pressure on the morphine pump permanently attached to her thigh.  We then make her porridge for breakfast and spend the next hour or so feeding her one tiny mouthful at a time while telling her stories, and rubbing her head with one hand.  She then usually has a bottle and falls asleep on one of our laps for a little while.  When she wakes up, it’s time for another diaper change and perhaps a few books before lunch, which is usually some form of noodles.  Again, lunch is fed to her one small bite at a time.  It sometimes takes an hour or two to feed her, and then we generally try to get out for a short walk, or a sit under the tree so we can get outside.  A long afternoon nap usually follows and then we usually have visitors over who entertain us and bring news from what we refer to as “the outside world”.  The evenings are spent on the couch singing songs, reading books, and sometimes watching videos on the laptop.  Nighttime comes with a long medication routine that includes one oral dose of medication, two suppositories and a bolus of morphine.

Stella’s cancer is my red car.  I acknowledge that it has cut off my plans for where I’m going and how I’m going to get there.  I could react angrily.  I could be grumpy about it, let it ruin every day and get more and more upset, wondering why that car had to swerve into my lane and ruin everything.  I’ve done my fair share of shouting obscenities and trying to gain control back of the road, but it doesn’t change the fact that the red car cut me off.  Being angry and vengeful won’t alter my reality. I can’t change the fact that my child is going to die of an aggressive, rare and horrifying form of cancer.  I can’t erase the memories in my brain of her voice calling “Mama” to me with excitement, or her arms wrapping around me in a big hug, of her smiling and twirling and running.  I can’t control what once was, what will be, or what is.  I can only surrender to it.  Stella lives life from her gut.  Stella lives life from her heart.  Stella lives life from the core of truth. Stella lives life in a place where there is no control, no ground under her feet, just a journey that she long ago surrendered to.  Stella has done all of this intuitively, whereas I have needed to unlearn a lifetime of expectations.

I have decided to believe that the red car containing Stella’s cancer is not out to get me, or ruin everything, but that it is here to teach me a lifetime of lessons about surrender, acceptance and love.  I have decided not to waste the last precious moments of my daughter’s life being angry and bitter about it, instead choosing to believe that yesterday’s shadow is at my back, and tomorrow’s light is shining in the beautiful face of my precious girl and her incredible brothers.

Poppa, me and the kids say goodbye to our old car:

Little Visit to the Playground:

Beautiful Stella:


Beautiful Sam:


 

Beautiful Hugo:

Family!!!


 

 

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Note to a Neighbour

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Note to a Neigbour

Dear Neighbour,

I don’t know you and you don’t know me.  Maybe just a quick nod or cursory wave once in awhile as we pass each other on the street.   We are neighbours, but not the kind of neighbours that have BBQ’s together or whose kids play together.  It’s probably because we just haven’t had time these last few years to talk, but more likely it’s because we don’t really have too much in common on the outset— you guys are a bit older than us, you have a huge Greek family, your kids are 17 and 15, and I guess we are all just busy living our own lives behind the doors of our matching bungalows, close in proximity but strangers in real life.

But we do have a connection, even though we’ve never talked about it or acknowledged it before.  You see, my daughter was diagnosed with a fatal brain tumor in June of 2011 and your son was diagnosed with Renal Cell Carcinoma in February 2012 that has now metastasized to stage 4, meaning his cancer, too, is fatal.

So while I don’t know you, I know that feeling you get when a Doctor looks you in the eye and tells you that your child is going to die.  It’s a wave of iciness that rolls in waves from your stomach up to your throat where it solidifies into a gag.  I know how it feels when your heart breaks and the smashed pieces of it slice through your soul like a butcher knife.  I know what it’s like to not sleep for two weeks straight, staring at the world spinning around you, feeling completely disconnected from it.  I know that you walk around feeling like you are living in a nightmare but unable to wake up from it, no matter how hard you pinch yourself.  I know you are trying to be positive and strong in front of your child, but you really want to grab them with all your strength, pull him into you and scream “No” over and over again until it isn’t true anymore.

I saw you guys at the grocery store yesterday.  I saw your son in his wheelchair, pale and skinny, his eyes looking extra bright under the fluorescent lights of Sobey’s.  I saw you with your head down, pushing his wheelchair.  I recognized instantly the agony in each step you took.  I saw you standing there, trying to act normally, just picking out apples from a bin, but I know you are aware that no matter how carefully you choose the bright red fruit, each bite will be tasteless because nothing matters other than the fact your child is going to die and that is what plays in your head day after day.  I wanted to reach out to you to tell you that I understand, but I couldn’t. So, I just pretended not to see you, and stood in front of the Deli counter watching you from the corner of my eye.

I imagine what it is like for you to see other 17-year old boys walking to school with their friends, listening to their iPods, laughing and carrying hockey sticks through the streets, starting to think about what University they want to go to next year.  For me it’s a bit different because Stella is only 3, so I get sad when I see kids with their backpacks on headed to school, riding their bikes, running into their parents arms.  But I know our bitterness about it all is the same.

I know how exhausting it is to get out of bed every morning and try to live in a world that you don’t fit into anymore.  I will tell you that the agony you feel as you watch your sons friends get bigger and stronger and live their lives probably won’t go away, but you will likely just learn how to live through the pain the way I have.  It never stops hurting to hear your child’s peers talk about their soccer games, field trips, playdates, etc. but eventually you just smile through it all and it doesn’t feel as acute anymore. You get used to being sad.  But I do know the pain and anger you feel when you look at other kids his age, wondering why it had to be your child, your life, your heart.  I understand how hard it is to try to forget about all the dreams you once had because the reality is too hard to understand most days.  I know what it’s like to have days where you can’t stop crying, and days where the grief is so intense that you are in too much pain to even cry.  And people will tell you to focus on the good memories you have with your child, before they got sick, but the good memories hurt just as much as the bad ones.  I understand how it feels to watch your child lose their physical abilities one at a time and to scream at the universe that your child has suffered enough and to just STOP it already.

I wonder if you’ve learned some of the lessons that we have about smiling through the pain, taking it one day at a time, and making as many memories as you can.

I wonder if you’ve learned to compartmentalize the pain, joy, fear and hope that come with each breath in order to make it through the day.

I wonder if you’ve learned that every single time your child smiles, it tattoos itself on your soul.

I wonder if you ever think about me the way I think about you.

I wish I was brave enough to knock on the door of your house and give you a great big hug.

I wish I was confident enough to be able to tell you that we’ll get through this somehow.

I wish I could talk to your son and ask him how it feels, because then maybe he could give me some insight on what Stella is feeling.

I wish I could let you know that I care about you, even though we’ve never really spoken.

But most of all, I wish neither one of us knew how it felt to be the other one.

Sincerely,

Mishi

Stella plays at Kimbourne Drop-in Centre:

Stella and Hugo under the tree with Poppa:

Xavier and Sam are besties!

Our girl:

 

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The Strength of Stella

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The Strength of Stella 

Thank-you so very, very much to everyone who has been keeping vigil with us and Stella these last five days, both from near and far.

 

Thank-you for your prayers, your candle lighting, your faith, your food, your company, your love, your cards and your caring.

 

I wrote a blog several months ago about religion and faith and trying to figure it all out.  I’m still in the midst of my spiritual discoveries and journey, but I have to share with you that I am convinced Stella can feel the great powerful energy that has been generated on her behalf because, once again, she is defying what the Doctors told us.

 

Last Tuesday we were told that Stella was fading quickly, that we were down to days with her (the fourth time we have been told this in the last 14 months).  She was sleeping almost constantly and eating only small amounts of ice chips.  Not able to reliably swallow her medications any longer, we moved her to a morphine pump to control her pain.  We spent three days monitoring her every breath.  We carefully recorded the last time we had seen her laugh, or smile.  We watched her struggle to open her mouth even a little bit.  We carefully swabbed her eyes which were crusted over, staring at nothingness. We stroked her hair, told her stories, gave her kisses.  We put a sign on the door indicating we were not longer accepting visitors.  Our families took time off work and school and came to us.  The Doctor contacted the funeral home to confirm everything was ready.  The person doing Stella’s service contacted us with final details.  Aimee and I held each other and kept repeating that we were going to get through this.  Our hearts broke, our stomachs churned, our racing minds kept us awake at night.

 

And then…incredibly…since yesterday…Stella has come back.  Out of nowhere her eyes are suddenly open and clear.  Her colour has turned from ashen to pink.  She is able to drink fluids again.  She is able to eat again.  She has even smiled a few times.

 

We don’t know what to make of it.  The Doctor doesn’t know what to make of it.  We are still cautious about what all this means.  We have not exhaled completely yet, but we were almost giddy with excitement today when Stella seemed up for playing again.  Trying to cram everything in that we could, we took her to the backyard to play in the sand and baby pool.  We gave her a bath. We pulled out her electric car and took her for a drive.  We read books.  We sang songs.  We laughed.

 

We don’t know what tomorrow will bring, but today gave us a hundred more memories and 133 more photographs of another day with our girl.  And I can’t figure out any reason that this could have happened, other than that the universe was so full of love and light for our girl that she decided to give us a little bit more herself.

 

Also below are two blog entries from Stella’s Aunties (Heather and Juju).  They are different. They were written on different days, in different styles.  They are about different things, but they both pay homage to how our girl continues to amaze and teach us about life…and ourselves.

Today our family made some memories!

Another day with my girl:


 

Humour Is A Funny Thing

By: Auntie Juju (Julia Gonsalves)

Humour is a funny thing. Sometimes its about words, sometimes its about the placement of a pause, a facial expression, purely a context. Stellie you have brought out the most basic humour in all of us- makeshift costumes, the animation of inanimate objects, mock stealing, the “I got your nose” kind of humour that delights kids your age, and adults our age in times of crisis especially. It is humour we don’t need to think about, or plan, or even be funny to pull off well. And there are some jokes that really never get old- the ones that end up in a smile, a laugh or a smirk from you. And often the ones that don’t make you smile, make us smile amongst ourselves because we are making fools of ourselves and we suspect that you know it. Maybe we even embarrass you sometimes, because you give us that plain look of a teenager that says do you have any idea how ridiculous you look? Humour has been here ever since your diagnosis- lucky for you kid your family was pretty damn funny to begin with (mostly intentionally). We make jokes about the most untouchable topics now, and we stand on our heads for your sake Stellie, but also for our sake. Because of you we’ve discovered that your Auntie Angie does a spirited british accent and has some intense puppetry skills she would never have revealed, didn’t even know she had, before this. Stellie because of you we have cried much less than we expected to, and laughed much more. We have been training our bodies with your help since last June to retain the practice of laughter as a tool for support, connection with each other, barrier from severe mental health symptoms, and a creator of energy when any of us finds those reserves completely depleted. Stellie thank you for appreciating our humour, from the most basic to the occasionally more advanced, for encouraging it by random flashes of the most brilliant smile. Thank you too for allowing me to feel confident that even when you are physically unable to smile, that you still value our attempts, and translate them, for you and for us, in languages of love, and security, and mutual benefit.

Anything for the promise of a smile: 


Our Extraordinary Girl

By: Auntie Heather (Heather Methven)

The journey with Stella is comparable to the opening tornado scene in The Wizard of Oz. Our families have been swept away and we are constantly churning in a state of fear, uncertainty and unpredictability. I thrive on routine, facts, order and predictability. The unknown drags me down into a pit of anxiety and panic. This whole journey has taken me out of my comfort zone and forced me to confront my biggest fears as well as, fears that I didn’t even know existed. This journey has also taught me valuable lessons and has changed my view, as well as my thinking on a lot of areas in my life. It has made me weaker and it has made me stronger. This year has been the most devastating, yet extraordinary year of my life…if that makes sense.

 

The devastating piece that we have known from the start of this journey is that Stella will die. I still cannot even phantom how we are all going to cope when our girl is gone.

 

The extraordinary piece is that we grew closer than ever as a family. We laugh, cry, vent, support and enjoy each other. I have realized

how precious time with family is and I will always ensure it comes first before anything else.

“The only rock I know that stays steady, the only institution I know that works is the family.” – Lee Iacocca.

 

The extraordinary piece is that Stella was only given approximately three months to live but she amazed us all and is still with us after fourteen months. Fourteen glorious months of special memories and time spent together.

 

The extraordinary piece is how adaptable Stella has been through this all. We were fiercely distressed wondering how Stella would cope when she lost her abilities one by one. We all eventually realized that our

distress was our distress. Our girl would provide us with valuable lessons on endurance and perseverance. As Mishi reminds us “Just because you can’t walk, doesn’t mean you can’t dance.”.

 

The extraordinary piece is how many people have “stepped up” to help us and hold us up through this journey. Mishi and Aimee have always had the most exceptional friends (which is actually a testimonial to them). Family, friends and strangers have joined us, comforted us and assisted us throughout the entire journey and we will forever be grateful.

 

The extraordinary piece is learning from two of the most remarkable mothers in the world. They have shared their journey with all and opened their minds, hearts and feelings knowing that it would put them in a vulnerable position.

 

The extraordinary piece is that Stella has changed the lives of many and has accomplished more in her three short years of life than most adults ever will. We have all learned exceptional lessons from our girl that will stay with us forever. She is the best teacher I have ever known.

The extraordinary part is that Stella is a living treasure of gold, she left her mark on the world and the world is a better place because of it.

 

We have all been blessed with support from others. There have been so many people that have personally helped me navigate through this. It would be unfair if I did not mention two very special ladies that have kept me from enduring a nervous breakdown during this turbulent time. Andrea (my therapist) and Wendy (Daniel’s mom).

 

As soon as I found out Stella had DIPG I spent hours and hours looking for anything and everything I could possibly find about this monster. I joined every on-line DIPG group. I followed blogs of parents who have had or have a child with DIPG. I have read obituaries from thirty-two children who have passed away from this atrocious disease since Stella’s diagnosis.

This is a reoccurring poem that I have seen on many of the DIPG websites; I would like to share it with others:

 

After the death of a child

Please, don’t ask me if I’m over it yet.

I’ll never be over it.

Please, don’t tell me she’s in a better place.

She isn’t here with me.

Please, don’t say “at least she isn’t suffering”.

I have yet to come to terms with why she had to suffer at all.

Please, don’t tell me you know how I feel-

unless you’ve lost a child yourself.

Please, don’t ask me if I feel better.

Bereavement isn’t a condition that clears up.

Please, don’t tell me “at least you had her so many years.”

What year would you choose for your child to die?

Please, don’t tell me that “God never gives us more than we can bear.”

Please, just say you are sorry.

Please, just say you remember my child.

Please, just let me talk about my child.

Please, mention my child’s name.

Please, just let me cry.

And, if you are brave enough, you will share the story of our extraordinary girl.

Auntie Heather sings Stella her favourite songs:

 

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Distance

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Distance

 

August is ending, and there is a sense of anticipation in the air as people rush around preparing for school to start next week, as they try to cram one more cottage weekend into the summer, as they pull out sweaters to ward off the chill from the late summer evenings.

 

Things are changing at our house too.  Just like the season is beginning to change again, so is Stella.

 

She has been sleeping off and on for the last nine days and struggled with fevers and constipation.  Today, she hasn’t woken up at all yet.  She is no longer eating and has had only small sips of milk and a few spoonfuls of ice in the last few days.  Her body is still here, but I fear she is already somewhere far, far away.

 

Although Stella has scared us several times in the last 14 months, each time Aimee and I braced ourselves for the worst only to have Stella bounce back, this time is different.  We are not naïve.  We know that without food or water Stella won’t live very much longer.   We called our families today and told them that we feel it is time for them to start coming, to gather together to create a nest of warmth and peace for Stella.

 

Is it possible that Stella will come out of this and bless us with more smiles, more memories and more time?  Of course.  Anything is possible.  But the odds are not good.  She is so thin that her clothes fall off her so I put her in Sam’s old shorts this morning…shorts for a 6-month old.  She is dehydrated so the urine in her diaper is so concentrated it’s almost brown, and only the size of a twoonie.  Her body knows it doesn’t need food anymore, so it doesn’t allow her to open her mouth to take any in.  Yet despite all of this, Stella is resting peacefully like a lovely angel on her couch, pain-free and as delicate and beautiful as a spring flower-petal newly opened to the sun.

 

The great chasm of distance has begun between Stella and us…Stella and you…Stella and this world.

 

I was thinking today as I held her limp body on my lap how the idea of distance is almost a foreign concept with today’s connected world.  Someone on the other side of the world can look and feel like they are right there thanks to the advent of skype.  People can see exactly what you are doing at the time you are doing it thanks to cell phones, twitter accounts, facebook.  There is a sense that we are always connected, always aware of what’s going on which makes distance feel almost non-existent.  But the one place where there is a huge distance is between the living and the dead.  It is much trickier to navigate the realities of not having someone around when you want them to be there and when you need them to be there.

 

Distance is not for those who fear it, it is only for those who are brave enough to spend a lot of time missing someone in exchange for a spending little time loving them.  It’s about being present to a good thing, even if that goodness is temporary.  It’s about realizing that the only thing that truly bridges distance is love.

 

And so, with not much more left that Aimee and I can offer Stella right now, we have refocused our efforts on reassuring her.  All day today we took turns holding her and whispering in her ears that she is safe, she is treasured, she is loved. We tell her she is our girl, and remind her of how special she is.  This afternoon as she slept, I curled up next to her on the couch and held her frail body as close as I could.  Her bony shoulder became a pillow for my head, her warm neck caught my tears, her skinny legs slung across my hips anchored me to the moment, and her breaths fanned my eyelashes, reminding me to take everything just one moment and one breath at a time.

 

Right now, we just watch and wait and stroke Stella’s hair and memorize each part of her face and listen to the rain pound on the windows.  We just hold each other and focus on emotional closeness, even as physical distance closes in on us.

 

Tonight as we go to sleep, we ask that

 

If you believe, please believe we will make it through this.

 

If you light candles, please light a candle to brighten the darkness that is to come.

 

If you pray, please pray for Stella’ comfort.

 

If you are lucky enough to love someone, tell them they are loved.

 

Gracie and Stella watch Cinderella together (Sunday August 19th):

Aimee, Stella and Sam go to Thunder Beach for the day (Saturday August 25th):


The three kids at Riverdale Farm—only Sam was awake for the trip, but it was fun nonetheless!— Sunday August 26th:

Good night sweet girl (Taken tonight, Monday August 27th):


 

 

 

 

 

 

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