Strong Enough To Scream

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Strong Enough To Scream

 

A new friend, Kristine Y., sent me an email with the following in it:

 

“Why do people tell us to be strong?  Maybe because they hear it in the movies in such a motivational way, it seems that it does no harm or causes no interference in the grieving process.  And then, people are always more comfortable when the grieving person does not give off the sense that he or she is falling apart.  If the grieving person doesn’t cry and express too many emotions, we wont feel too much either.  The truth is that pain can be contagious.  You cant be around someone in deep sadness, and not feel it, so if we put a lid on the grieving persons emotions, we wont have to deal with them ourselves. 

But at what cost do we camouflage our grief?  When we shelve our pain, it doesn’t go away.  Rather, it festers in a myriad of ways.  We need to understand that strength and grief it together.  We must be strong to handle grief, and in the end, grief brings out the strengths we never knew we had.”

 

This could not have come at a better time, because for the past few days I’ve felt like the carefully constructed facade of “being ok” I’ve worked on for the last several months, is crumbling rapidly and I feel guilty about it.  I keep avoiding making social dates because I don’t feel like people want to sit down and just listen (again) to how broken I feel right now.  I have a much easier time communicating my despair in blogs or emails than I do in person or on the phone.  There are certain people that I can open up to, but most of the time I resort to crying only in therapy…or with Aimee late at night…or in the shower…or on walks.  Even with people that I feel most comfortable with in the whole world, I don’t like to fall apart.  It’s that silly word “strength”, isn’t it?  That word that makes us feel as though to fall to your knees and sob will make others uncomfortable, will show your weakness, will create a scene.  How we’re taught when something horrific happens, to never talk about it lest we make others uncomfortable.  Leave it in the past.  The way that if you see someone out in public, a stranger crying, you just walk by, averting your eyes.  How you say simply to someone who has returned to work after their husband died, “I’m sorry to hear about your husband”.  They respond with, “thank-you” and you follow-up with, “So, the meeting on Thursday will deal with the reconciliation of the 2010-2011 fiscal budget and…”  Essentially brushing off this great tragedy.  But it’s okay, because they don’t want to talk about it either.  How sad that we’ve created this fear of showing emotion to one another.  So many times on my walks I’ve wanted to show up on a friend or family members stoop, and just collapse in a puddle of tears. But I always stop myself.  I feel like they wouldn’t want me to “ruin” their day by doing that.  That they wouldn’t know what to do or say.  That I would make them uncomfortable.  That once I started I wouldn’t be able to stop.

 

I’ve always thought the Christian way of grieving for people after they die in North America is fairly inhumane.  You’re supposed to go an sit through an emotional funeral service, say goodbye to your loved ones in 40 minutes or less, and then turn around and host a bunch of people at your home with food and chit chat.  I can’t tell you how many times I’ve stood at one of these “receptions”, watching people greet one another with hugs and say over and over, “I haven’t seen you in ages!  How are you, what’s new?”.  There is little talk or thought of the person who died, no space is created for tears once you step outside the designated “funeral” space.  And once the funeral is done, your public show of grief is supposed to be over.  You get three days of bereavement for the death of a child or spouse, and you’re expected to go back to work, school, life, as though you’re completely healed.  In reality, you are never healed.  You are never the same, you just learn to walk around with a huge hole in your heart and a mask over your face.

 

All these thoughts are starting to flood me because Stella has had a very slow week.  We’ve had several times during these last 8 months when we’ve wondered, “is this it?”, but that’s not what I’m feeling right now.  What I’m feeling is just profound sadness for what little my daughter has left.  What little of herself, and what little time.  Her speech has all but disappeared over the last 9 or so days.  It’s been the hardest part of her cancer so far.  Without the ability to communicate verbally to us, we are, for the most part, stuck in this unbelievably sad and maddening vacuum of frustration. We keep trying to guess what she wants, but she just stares at us with her big blue eyes, unable to even tell us if we’re right or wrong.  I keep asking myself if I’m going to be strong enough to get through this next part— the part where it’s going to get very, very, bad and then Stella is going to slip through our fingers.

 

I had a nightmare last week that shook me to the core.  In the dream, Aimee and I were at the zoo having a beautiful day with Stella— just like we always used to.  We got to a small hut-like area and a gentleman there held his arms out to our Stella.  He took her and told us to come back for her in 45 minutes.  We waved good-bye and Stella smiled and happily followed the man inside his hut.  Aimee and I grabbed a drink and then returned to the hut.  The man met us at the back door and handed us an urn full of ashes.  “Here she is”, he said to us.  I woke up in a full anxiety attack, and it was hard to control and compose myself because the dream is truer than I often let myself think.  One day soon—maybe in the next 8 weeks— all we will have left of our Stella is ashes.  How can I ever reconcile the thought of not holding my daughter ever again?  For the rest of my life never feeling her warmth, smelling her head, letting her smile fill my heart.  It’s too much to bear.

 

I decided today that I am not going to be able to get through the foreseeable future without being able to grieve publicly, openly and loudly.  I am not going to be healed three days after Stella dies.  I am never going to be healed.  I am not going to be able to control the flow of tears, the screams, the despair.  I am not going to want to be hugged and coddled and pitied.  I just want to be seen and heard as I lose the person I love most in the world.

 

And it is not because I’m not strong enough to stay silent and stoic.  It’s because I am strong enough to know what I need…and what I need is time, tears and truth.

Eating sprinkles!

Naptime for Sam & Poppa


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Seeing Red

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Seeing Red (Curls)

Anger is not an emotion that I spend a lot of time on.  Out of all the things I’ve felt in the last 8 months, anger is always the one I try to push away because it seems so unproductive and destructive.  But… once in awhile, I just can’t help it.  I feel the fire inside me starting to crackle and burn.

People who know me will know that my temper is more like a firecracker than a forest fire— I can go from 0 to 60 in seconds and back again.  Once I’ve “exploded”, I’m usually done and can return to normal quite quickly.  I would say it’s the redheaded temper— except I don’t have red hair!

But my anger about Stella’s cancer has not been like a firecracker… it’s a slow burn that starts deep inside my stomach and then creeps through my blood before it reaches my cheeks, making sure to stop at my aching heart for a long enough time to hurt.  I hate feeling angry.  It’s one of the few emotions that I have a really hard time controlling, and for a personality like mine, losing control is pretty disconcerting.  But…who am I kidding. I haven’t felt like I can control anything since June 24th, 2011.

Part of the catalyst of my anger was that lovely Ontario holiday, Family Day.  I am generally a fan of it… a day celebrating families is a nice sentiment, but this year Aimee and I boycotted it.  A holiday celebrating parents and kids felt almost mocking to us.  And I started to think about what a horrible title “Family Day” is for a public holiday.  Not everyone has families.  Not everyone has positive connotations with the word “family”.  I began to think about those from broken families, those people struggling to create families, those who have been abused or disowned from their families.  And the more I thought about it, the worse mood I was in.  Soon, I was allowing myself to be mad at anything and everything.  Before I knew it, I was so mad I was seeing red.

I saw red when I walked by Aldwych Park, where I used to bring Stella to play.  She liked the slide and the swings the best.  I glared at the children running around and shouting, and the parents standing there smiling with their Starbucks coffees.  I know those parents.  I used to be one.  They looked so smug.

I saw red when I emptied out two diaper genies, ran out of wipes and diaper cream for both kids, and thought about how Aimee and I have two children who we change multiple times a day…but one of them used to be potty trained and one of them should be able to do so much more than lie helplessly on a change table incapable of rolling over, moving, or even opening her legs.

I saw red when I tried to read Stella a book and her head kept flopping down to her chest, so I had to hold her head back with one of my hands on her forehead, while trying to turn pages and hold the book with the other hand.

I saw red when I went through Stella’s drawers and removed all the clothing that no longer fits her.  It’s a reminder that she’s getting bigger…taller…older.  But she’s dying.  It makes no sense.  I filled her drawers with new T-shirts Aimee had gone out to buy.  T-shirts in 3T because that’s what fits her.  T-shirts so that we can access the ports that are now on both of her arms.  T-shirts so we can stick thermometers under her arms and phenobarbituate and morphine in her arms.

I saw red when I saw a mother lecturing her daughter about how they had to hurry to get home in time to practice piano before their next play date, and rolling her eyes and tugging at her kids jacket impatiently, rushing her away from the park.  I used to do that to Stella.  I hate that I used to do that.

I saw red when the 6 o’clock news featured lineups at the Science Centre, Zoo and Harbourfront where kids and their parents waited to enjoy family day together.  I was mad at the parents who complained about having to wait in line, while my once active daughter lay flopped on the couch, clicking her tongue rhythmically at the air.

I saw red when I had to spend an inordinate amount of time filling a syringe with deadly medication, tapping out the bubbles, double checking the amount and then pinning my 2-year olds arms down while I gave her an injection painfully slowly to minimize the pain.  I was hardly breathing from the stress of it all.

I saw red when I thought about all the parents who need to watch their children in pain constantly.  The parents whose children endure years, or even a lifetime of painful treatments for various ailments.  I saw red for anyone who has lost someone they loved with all their heart, whether they were 1 day old or 100 years old.

The problem with anger is that there is nowhere to put it.  When I am sad, I cry tears.  When I’m happy, I smile or laugh.  But when I’m angry, there is no way to express it so I just use the energy to organize the house, or go for a quick walk.  It doesn’t make me feel good to be in a place of anger.  After muttering to myself most of the day and feeling a nervous angry energy that I couldn’t shake, I went for a long walk with Sam.  He has these deep eyes that make me feel as though he knows more than he’s letting on.  I let myself get lost in his eyes for awhile.  I could feel him rallying me on to go back to the house, take a deep breath, and do what needed to be done.  To let go of the anger and focus on the love that has sustained us so far.

We returned home and Stella was waiting on the couch.  She held her arm out to me and mouthed, “Mama…hold me”.  I sank into the couch and scooped her into my arms, wondering why she is never angry at the fact that her body is completely betraying her.  At the age of two she is a much better person that I could ever hope to be.
I saw red again, but this time it was Stella’s curls.  It was her lips.  It was cheeks, rosy from pressing up against the couch.  It was chipped nailpolish.  It was the sunset.

And this time when I saw red, I smiled.

Visit from Tutu’s Dog, Buddy to brighten the day

This is Stella’s devilish smile.  I’m pretty sure she’s thinking something along the lines of… ‘the only thing better than having one baby to torture, is two!’

Hanging out with Auntie Heather

Stella getting ready to go out for a (very rare) walk

 

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FAQ’s- Updated Sep/2012

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FAQ’s

The idea for this blog post came out of emails, phone calls and conversations we’ve had with people over the last little while, who wanted to know more about us, Stella, the medical information, etc.  So, below Aimee and I have tried to answer some of the most Frequently Asked Questions we get.

Please note that the “medical” information contained within this posting is based on things that we have read/ been told by medical professionals over the last several months.  It is not properly referenced, and should not be considered official medical information.  This is what we have heard, learnt and believe, but we can make no promises regarding its accuracy.  

Who are you guys?

We are Aimee and Mishi, a same-sex couple living in Toronto, Canada that have been together since 2003 and married (legally) since 2006.

We are both extremely close to our families, and are lucky enough to have an excellent group of people who have loved and cared for us our entire lives.  We also have a huge network of friends that have proven time and time again that it takes a village to raise a child— and help a child die.

We both worked full-time before Stella’s diagnosis, but have been off work since the day Stella was diagnosed, June 24th 2011.  With great thanks to the incredible support of our workplaces.

Stella Joy is our firstborn.  She was born in April of 2009.

Her brother, Samson John, was born October 2011- 4 months after Stella’s diagnosis.

UPDATE:  Her second brother, Hugo Charles, was born August 2012- 13 months after Stella’s diagnosis.

What does Stella have?

Stella has an aggressive (cancerous) brain tumour called DIPG.  DIPG stands for Diffuse Intrinsic Pontine Glioma.

DIPG is “the most devastation of paediatric malignancies”.  The mean survival rate for children with this cancer is 9 months, with virtually all children diagnosed dying of the disease within 1-2 years.

DIPG has a 0% cure rate.  That’s right, 0%.

What is the treatment for DIPG?

Although the cure rate for DIPG is 0%, there are several treatments which are offered to families in an attempt to extend life.

The standard treatment offered for DIPG is 6 weeks of radiation.  Radiation involves high-energy X-rays directed at the site of the tumour that can destroy tumour cells.  Often, this treatment can reduce symptoms significantly, but other times the radiation cannot help as parts of the brainstem may have already been permanently damaged.  There are also several risks involved in radiation such as paralysis, brain damage and incidents of fatigue, diarrhea or vomiting.  In 30% of cases, the radiation can actually make the symptoms of the tumour worse.

Steroids (dexamethasone) are often given to children with DIPG, to try to improve symptoms.  There is often incidences of hydrocephalus in children with this tumour (buildup of fluid in the skull), which can be extremely painful and cause pressure on the tumour.  Steroids can reduce the swelling and pressure, but also come with side effects such as: mood changes, increased appetite, weight gain, fluid retention, blood sugar instability, high blood pressure and increased susceptibility to infection.

Surgery will not help.  The tumour invades the brain stem, growing and spreading between normal nerve cells so any surgery would only serve to cause further damage to these nerve cells, which are vital for swallowing and breathing.

Chemotherapy is also not very helpful.  There has been little evidence to show that chemotherapy has been of help in DIPG, so we did not feel that the risks and side effects were worth it for our purposes.  Immunotherapy, another common treatment, has also had disappointing results.

There are many, many clinical trials currently underway to try to crack the code of this devastating disease, and many families have written to me about their exploration of alternative therapies including diets, shakes, clinical trials, homeopathy and chinese medicine.

What treatment is Stella receiving?

Stella is not, and has not, received any treatment.  Because Stella was barely 2 years old at the time of her diagnosis, the standard treatment of radiation therapy would have entailed 6 weeks of Stella being sedated on a daily basis to receive the therapy.  With no guarantee it would work, Stella’s young age, and the fact we wanted desperately to enjoy our remaining time with her, we opted for no treatments.  She was on steroids for one week post-diagnosis, but we despised the changes we saw in her (huge appetite, tantrums known as “roid rage”, discomfort, etc.) so we took her off immediately with no plans to put her back on.

This decision to not try to prolong her life using treatments was not one we took lightly, and we are extremely pleased with the high quality of life we have been able to offer Stella, free of the burdens of invasive medications, side effects, sedation, etc. that a 2-year old would not have understood.  Because of this decision, we were able to spend the summer taking Stella to cottages, the zoo, Riverdale Farm, the library and on playdate after playdate instead of being chained to the Hospital.  In fact, Stella has been home the entire time since her diagnosis which has been wonderful for all of us.

We have also been extremely lucky to be connected to The Temmy Latner Centre for Palliative Care, and have an excellent Palliative Care Doctor who visits us weekly at home and gives us an incredible amount of information and support.  UPDATE:  She also has a nurse from VHA who comes bi-weekly to check in on Stella and change some of her dressings/medication tapes as needed

Although Stella is not receiving treatment, she receives morphine on a daily basis to eliminate the pain in her head, PEG flakes to counteract constipation, Zofran for nausea and Ativan for seizures.  So far we have been able to give her all her medications orally…mostly hidden in ice cream! UPDATE:  Stella continues to receive medications, but as her swallowing has become much less reliable, we have changed the method in which she receives them.  The morphine she now receives thanks to a small pump (we call it her “special purse”) that allows the medicine to go directly into her bloodstream, with the option of increasing it for pain as needed.  The Zofran for nausea still gets given in ice cream (r porridge!), the Ativan for seizures is not Phenobarb for seizures, and is given as a suppository.  She also gets gravol daily in suppository form and her PEG flakes for constipation either in her porridge, or milk.

What are the symptoms of this tumour?

Every child has a different journey with DIPG.  The tumours don’t always grow in the same place, or at the same speed.  The brainstem where the tumour grows controls motor functions.  The tragedy of DIPG is that it slowly robs the patient of motor functions such as walking, arm movements, speech, sight, eating and breathing while leaving their brain completely intact.  That means that children with DIPG are aware of their decline and continue to grow and develop cerebrally in every other way.

For Stella, the first thing to disappear was her ability to walk which left her in August.  She has been unable to grasp small objects and do things like feed herself since mid-September.  Her eyesight is compromised, but she is still able to see some things although we’re not sure how much as it is difficult to communicate with her.  Whereas in August and prior, Stella was speaking in full sentences with a huge vocabulary, now it takes her up to 30 seconds to squeak out one word, which is generally difficult if not possible to comprehend.  She eats very little and requires liquids to be thickened to enable her to swallow them.  Her diet at the moment consists of avocados, mashed potatoes, apple sauce, hamburgers, ice cream and milk.   Since October she has been incapable of sitting up unassisted, and as of December she is unable to hold her head up without support.  She drools constantly and has begun to suffer from seizures.  UPDATE: The tumor has continued to wreck havoc on Stella’s physical abilities.  In the last several months since this was written, Stella has lost any and all ability to have physical independence.  i.e. her legs, arms, neck, head have zero muscle tone so she must be supported 100% all of the time.  She has completely lost the ability to speak, there are no longer any discernable words although she learned to communicate “yes” or “no” by sticking out her tongue.  The right side of her face is somewhat paralyzed giving her smile a crooked look.  it is much more difficult for her to laugh/smile, but she still does it as much as she is able.  Right now almost all of her communication is through her eyes.  They go wide when she is happy/excited, half-closed when she is in pain or tired and can roll up when she feels like it.

However, Stella’s smile remains intact and the fundamental parts of her personality— fearlessness, humour and mischievousness are still completely present.

How long will Stella live?

No one knows.  When we decided against treatment at the end of June, Doctors told us to expect Stella to live 3-4 months maximum.  Since we had a baby due 4 months after diagnosis, we lived in fear that Stella would never meet her brother (whom she named “Sam” in utero, after her favourite book series Stella and Sam).

In the summer, the Doctor guessed that the chances of Stella living until Christmas were close to nothing.  However, we are 8 months into the diagnosis, and Stella is still with us.  She has seen Sam being born, lived through Hallowe’en, Christmas, New Year’s, Valentine’s Day, etc.  She still smiles on a daily basis, and although she is declining, the decline is slow and often stalled.

We have no doubt she will die, but no one has any idea when…and we’re not in any hurry to find out!

UPDATE: Openly defying any Doctor who has seen her, Stella is now 15 months into her diagnosis and is still alive and quite content.  We have had a few “close calls” where we thought we were losing her, but each time she rallied back to give us more time and smiles together.

Do you have any advice for other parents going through something similar?

Well, not really.  We have found it incredibly helpful to hear from other parents that have lost a child.  Their advice is aways so heartfelt and honest.  The only advice we can come up with at the moment is to listen to your own heart and make decisions based on your knowledge of your child, individual circumstances and personal convictions.  Grieving is such a personal journey, and the patience you need to have with yourself is infinite.  No one’s path with DIPG is the same, and the only thing you can strive for is that you don’t regret any of the decisions you’ve made.  We think the best way to do this is to trust your instincts and be at peace with the journey as much as possible.

Why don’t you do Make-a-Wish for Stella?

Both Make-a-Wish and Children’s Wish Foundation will not grant wishes for children under three years of age.  Even if Stella lives to be three (her birthday is in 2 months), she will not qualify as the rules state the child must be able to communicate clearly and independently what their wish is…something Stella is unable to do.

We were, however, lucky enough to have been able to take an incredible vacation to Pennsylvania in August to Sesame Street Land, thanks to generous donations from friends and family.

UPDATE: Way against the odds, Stella made it to her third birthday!!  We contacted Make-A-Wish and though she was too sick to go very far (i.e. Disney), but they sent us to Stella’s favourite vacation spot– Great Wolf Lodge in Niagara Falls, for two nights!  We brought Auntie Heather, Daniel, Xavier, Juju, Auntie Angie and Gracie with us and had a blast!

Are you planning on having other children?

Yes.  Although this is a very personal decision, Aimee and I feel strongly that getting a chance to be with Stella over these many months have given us a once-in-a-lifetime opportunity to learn how to be better parents and better people.  We would like to share what we’ve learned with other children, if we are lucky enough, and continue our dreams of being parents despite the fact that we will lose our first-born to this terrible disease.  We would like Sam to have at least one other sibling, and hope to use the inspiration and appreciation for the small things that Stella has taught us to raise incredible, independent, self-sufficient children… if we are lucky enough to have more.

UPDATE: Surprise!  Aimee and I indeed had another child!  Our second son Hugo was born in August 2012 and Stella absolutely adores him!

Why do you have this blog?

Originally it started off as a way for us to communicate to our friends and family Stella’s medical information and goings-on in a succinct and easy way.  However, it has evolved over the months and now serves as both a therapeutic tool for us, and a chance to tell Stella’s story and our innermost thoughts and feelings as we navigate this extremely difficult and uncharted territory.  We are a tangle of good days, bad days, emotions, fears, hopes, anger and joy.  We hope that this blog represents all of the parts of our journey and hope to someday print it out and give it to Sam as a memory of these days and his sister, whom he will not remember.

What can we do to help/What do you need?

This is without a doubt, the question we get asked most frequently.  We have been completely overwhelmed with the generosity of friends, family members and strangers.  When Stella was feeling better and more active, we were grateful to receive from people gift certificates for us to take her amazing places like the Ontario Science Centre, Zoo, Cottages, ice cream places, restaurants, toy stores, etc.

We were also so lucky to get oodles and oodles of delicious food over the last eight months which made it possible for us to care for Stella and Sam and ourselves and still be well nourished!

We have been the subject of several incredible fundraisers, organized by close friends as well as acquaintances.  Each fundraiser was special not just for the money that was raised, but because we were so lucky to connect with such wonderful people and see how a community that comes together can do incredible things.  It is truly uplifting.

Strangers and friends have sent us incredible things such as cards, letters, books, drawings, toys for Stella, games and gift certificates.  The mail has never been so fun!

But the most important thing that we need right now is just support and understanding.  Even though we are not always the best at returning phone messages and emails, we love and appreciate each and every one of them.  We love it when friends come visit us, when they invite us places (even if we can rarely go).  One the days where we feel like we’re living in a vacuum, a knock on the door bringing a fresh face and a smile lets sunshine in—both literally and figuratively.  Your email messages and blog comments are read and re-read and each one propels us forward and makes us feel less alone.

Your understanding, patience, support and love is what we need right now.  I know this journey feels long sometimes— to all of us, but please just keep doing what you’re doing, it’s EXACTLY what we need.

UPDATE: Another FAQ we get is who is who in our blog.  Here are some frequently mentioned family members and how they fit in:

Mishi: Stella’s Mama

Aimee: Stella’s Mommy

Poppa: Mishi’s Dad

GrandPa: Aimee’s Dad

DeeDee: Mishi’s Mom

Tutu: Aimee’s Mom

Nanny: Aimee’s StepMom

Auntie Heather: Mishi’s sister, Xavier’s Mom

Auntie Angie: Aimee’s sister, Gracie’s Mom

Uncle Tristan: Mishi’s brother

Juju: Aimee’s sister-in-law, Gracie’s Mom

Daniel: Mishi’s brother-in-law, Xavier’s Dad

Gracie: Our niece (Andrea and Juju’s daughter)

Xavier: Our nephew (Heather and Daniel’s son)

…there are dozens more in the “cast of characters” in our lives, but those are the most frequently mentioned!

UPDATE: Another FAQ We get all the time has to do with Stella’s favourite things/places that are often mentioned on the blog…

Library: We go to S. Walter Stewart Library:  http://www.torontopubliclibrary.ca/detail.jsp?R=LIB017

Drop-in: We go to Kimbourne Drop-In through the East End Children’s Centre:  http://eastendchildrenscentre.org/

Farmer’s Market: We go to the Farmer’s Market at East Lynn Park and East York Civic Centre: http://danfortheastcommunityassociation.com/

Playground: We go to Aldwych Park: https://foursquare.com/v/aldwych-park/4c059c6691d776b020b3f7f9

Cupcakes: Stella loves the cupcakes from Life is Sweet and Bobbette And Belle, both on Queen St. E.: http://lifeissweet.ca/

Indoor Playground: Playground Paradise, or Monkey Magoo’s

Music Therapist: Christina Weldon: http://facilitatearts.com/Christinaweldon.html

Favourite Sweets: By Christine McLaughlin, of Molly Cakes: http://www.mollycake.ca/

Stella proves that cancer can’t take away everything…her smile is our lifeline!


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In Here and Out There

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In Here and Out There

 

In here…

A few days after Aimee’s post about fear, we were again plunged into moments of scary despair.  Last Wednesday, Stella started to have a bit of a slow day.  By Thursday, she was sleeping all day and that night she spiked a fever.  By midnight, she had a fever of 103, and was having what were confirmed by our Doctor the next day as seizures.  They were terrifying to watch.  Lying in bed, her eyes would roll back and her entire body would tense as straight as a board, her hands forming hook-like shapes.  Her back would arch and her mouth would foam like a rabid dog.  We could do nothing to help her, and in those moments, she looked so very, very sick that we were paralyzed with fear.  I couldn’t stop crying.  We finally got the fever down and gave her enough medication that she was able to relax and fall asleep.  But sleep eluded Aimee and I, who simply gazed at our little girl, again feeling that disbelief that we would have to face a future without her.  It’s hard to believe that everything about this child is absolutely perfect, except for a tumour on her brain stem which is the size of your baby finger nail and is slowly robbing her of her faculties and life.  How monumentally unfair.

 

On Friday, Stella spent the whole day sleeping.  Her palliative care Doctor came to see us, and again we were faced with difficult decisions regarding whether it was time to put a port in her arm for medications, whether if she had an infection that was causing fevers we should treat it, whether it was time to start anti-seizure medication. etc.  etc. etc.  As always when we have a difficult day, I wonder if Stella will bounce back, or if this is the cliff we have been dreading and looking for over the past 7 months.

 

Out there…

Stella perked up on Saturday.  She has done this to us so many times, it’s almost comical.  She scares us for a few days, we watch and worry, and then one day she wakes up with a big smile and demands for a bottle and toast.  She was well enough that I felt comfortable leaving the house for the first time in four days.  I had decided to go to the Eaton Centre (with Xavier) to spend some of the gift certificates I had collected over the past year.

 

As I got to the subway with my stroller, I was flooded with memories of when I was on maternity leave with Stella and used to take her to this same station to ride the subway.  Other than the chid in my stroller, it all felt strangely familiar to me.  Bouncing the stroller down umpteen stairs while able-bodied strangers rush past. Shoving a bottle in the baby’s mouth with one hand, while steering with the other.  Making goo-goo gaa-gaa faces and noises and pushing the stroller back and forth while you wait in line.  Waiting for what seems like forever for the very few elevators at the Eaton Centre to take you to another level.

 

The Eaton Centre itself was a blur of light, noise and sensory overload action.  I have never felt so much like a tourist, observing everything.  It’s been months since I was at the Eaton Centre.  But it also felt comforting in a way.  I was blanketed by the anonymity of being in a huge mall.  Nobody there knew me, or Stella, or our story.  I was treated with disinterest by the sales people and, even though I never for a single moment forgot my life circumstances, I felt as though I had shed the Scarlet Letter of “mom of dying child” that is permanently tattooed to my forehead— at least for a little while.   It was nice.  I had fun, I felt free.  Retail therapy turned out to be good for me and Xavier proved to be a perfect shopping partner, smiling on cue and staying silent when I needed him to.  I was just like all the other dozens of moms there, pushing their strollers at cooing at the babies inside.  I felt like an actor on stage, but I was pleased with my performance.  “See!!!” I wanted to shout, “I’m still normal!  I can be here, I can do this”.  On the subway home, the woman across from me was trying to balance eating McDonald’s Chicken Nuggets with a drink.  At one point she dropped a McNugget on the subway floor and cursed out loud.  She looked so angry and was clucking her tongue and furrowing her brow.  ‘Relax lady”, I wanted to say, ‘it’s just a McNugget’.  Suddenly, I felt tired being out in public.  I have no more patience for people gossiping about their bosses at work, rolling their eyes about the lineups at the store, complaining that their daughter picked out clashing clothes for preschool that morning.  Somehow, being “out there” felt like a shirt that didn’t quite fit anymore.  I returned home in the early afternoon to a smiling Stella, and felt relieved and content to be back where I wanted to be.

 

Later that evening, Aimee and I went out for a long-planned dinner together.  We had a good time— we drank wine, laughed, ate good food.  Again, we appeared to anyone watching to be a completely normal couple out for dinner.  I looked around the restaurant and wondered if there were other people there that carry a burden of grief.  I’m sure there were, but everyone’s eyes were fixed on their plates, so I couldn’t see the dark shadows and lacklustre eyes that I always see in the mirror.  For the most part, Aimee and I talked about mundane things.  We played our parts well, and it was really nice to connect again, just the two of us.  As we were driving home, holding hands and laughing about the waiter at the restaurant, we got a call from Aimee’s sister.  Stella was having seizures again.  We sped through the dark streets and I felt so guilty for going out and for not being there when Stella needed us.  But by the time we got home, the panic had subsided.  Andge had administered the new aniti-seizure medication and Stella was cuddled in Juju’s lap, looking relaxed and happy with Gracie holding her hand while they watched Dora together.

 

In here…

Stella did not react to the anti-seizure medication in the way we expected.  Ativan usually would knock you off your feet.  For Stella, it had the opposite effect.  She received the medication at 8:00pm and was wired, her eyes wide as saucers.  She giggled, told knock knock jokes in her halting voice, danced and drooled.  At three o’clock in the morning, she was sitting with her Auntie Angie eating mashed potatoes and watching Golden Girls.  We brought her to bed and until after 4:00am she lay next to me, requesting to drink from her bottle and asking me to tell her the story of Cinderella, and then the story of Tikki Tikki Tembo.  I was both amused and exhausted.

 

Out there…

Stella ended up sleeping until noon the next day.  Since she was sleeping soundly, Heather and I took the boys to Church.  Again, when I stepped outside, I felt as though I was in disguise.  I’m sure most people at this Church assumed Sam is my first baby.  Some people even asked if Sam and Xavier are twins.  When I am away from Stella in these moments, I always feel guilty.  I want to tell people about Stella, but if I mention I have an older daughter who’s nearly three, people inevitably share a cute story about a child they know of a similar age, then wink knowingly like I know just what they mean.  In these moments, it feels as though there is sawdust in my mouth.  If I say, “Well, my daughter is palliative for a cancerous brain tumour”, I imagine the silence and discomfort that would follow.  So I say nothing.  I just smile back, all the while feeling uncomfortable and like I’m being dishonest somehow.

 

In here…

At home now, Stella vacillates between being wide awake and smiling, to falling into a deep sleep that she cannot be roused from.  The TV drones on continuously; sometimes it’s Stella’s choice (Dora or Golden Girls), other times it’s just muted moving pictures in the background.  Our family and friends pop in and out to check on us and help out.  The mailman comes at 10:00am and every Wednesday the Garbage/Recycling truck comes by around noon.  If Stella is awake, this is a huge highlight for her.

 

Out there…

There is snow on the ground. I can hear it crunching underneath peoples shoes as they walk by out house.  The bus stops at our corner every 20 minutes and I know there are people there rushing off to work, reading the paper and tweeting on their cell phones.  The days roll by, weekends come and go, the clock rules the world.

 

In here…

There is love and warmth and laughter intertwined with fear and dread and tears.  Time is measured in smiles, not seconds.

 

Out there…

Are my friends, my dreams for the future and the promise of “someday”

 

In here…

There is my heart, soul and life.

And Stella just said clearly and loudly, unprompted, “My mommies love me”.

 

 

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I’m Scared

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I’m Scared

I’m scared…

 

…that one day Stella will fall asleep and not wake up.  I know that this will happen eventually but I’m afraid that we’re slipping closer and closer toward that reality.  I’m scared every time her afternoon nap lasts four and a half hours instead of three.  I’m scared that  her now quiet and laboured speech will soon fade away and trap her in a space of exclusion and frustration.  I’m scared for the day that the sound of her voice will only ring inside me and not in the outside world.  While watching a video of Stella and her cousin playing at the cottage this summer, I recently realized that I had forgotten that Stella could talk and communicate with ease in August.  This unimaginable and torturous situation that we have found ourselves trapped in day in and day out has caused me to forget the sound of my own child’s voice a mere five months ago.  That doesn’t scare me – it just makes me feel like the angriest person on the planet.

 

I’m scared at the thought of Stella being scared.  When she wakes up in the middle of the night, she reaches out for us, her arms flailing uncontrollably and her teeth grinding into one another.  While Mishi stumbles to the fridge to get her bottle, I roll over and place my hand on her chest.  Her heart pounds through her chest at a speed that I can’t even explain.  She’s scared.  It usually takes about five minutes for the beats to slow down enough to count.  When we hold the bottle up to her mouth during this nightly ritual, she can no longer open her teeth wide enough on her own to drink.  I’m scared that no matter how hard we try to hold down our fear and gently pry her mouth open, one day it won’t work.

 

I’m scared every time I feel her warm drool on my arm when I hold her – the sickening reminder that her ability to swallow is continuing to go and the closer we are to losing the most precious part of our lives.  I’m scared for the first time a whole day goes by without a smile from Stella.  She still flashes them multiple times a day (a clue that she’s happy and still finds joy in life) and with each one we scramble to catch a glimpse of that mouth full of evenly spaced little teeth, each one of us trying so hard to catch it on camera.  I’m scared that one day she won’t want her bottle.  The infamous “baba”…her comfort, the centre of her universe, her motivation for doing things, her lifeline.  Through this experience, I’ve learned that the body can go a long time without food but the days are numbered once there are no fluids getting in.

 

I’m scared to one day wake up without her.  I’m scared for the day that our house and her things no longer smell like her.  I’m scared for the first time after she’s gone that someone who doesn’t know me well asks me how many kids I have.  I know what my answer will always be but the impact on the conversation scares me.  Sometimes I don’t know whether I’m more sad than I am angry or more angry than I am scared but I often think about how scary this must be for Stella.  Feeling her body change but not understanding why.  Needing to be carried everywhere she goes while her friends run around and the lack of self control that comes with that.  Struggling to push her words out but still not getting what she wants or needs.  Waking up at night, surrounded by darkness and not being able to move at all.

 

Despite all of this, our little girl still finds a way to make it through each day and continues to find glimpses of happiness and spurts of joy as she dances to the Golden Girls theme song or to the 100th rendition of Happy Birthday.  This makes her my littlest hero and helps turn some of my fear into the strength that I know I’ll need to get through this.

Stella, Day Two:


Million-Dollar Smile, Pre-Teeth:


Million-Dollar Smile, Post Teeth:


More Birthday Candles:


 

 

 

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