Are you strong enough?

Today I cried on public transit.  Sitting in my seat, my body harshly jerking forward every few blocks, the sun pouring in through the window beside me.  Tears filled my eyes, and gently rolled down my cheek.  Hiding behind my sunglasses and unable to stop it, I cried, and nobody noticed.  Their ignorance, it almost gave me permission to feel the way I felt, and let my guard down.  To not hold back, and reassure myself that it will be ok - but to just feel, and hurt, and cry.  To feel that raw emotion, that sadness.  The hot tears on my cheeks, with sniffling nose and even the lump in my stomach.  I felt consumed. 

Sometimes I can't exactly make sense of what happened in the past few years.  I find myself thinking, "Is this really my life?", or "How is this my life?"  But it's kind of as useless as trying to figure out how and why a six month old baby gets cancer.  And I've been down the road way too many times as it is.  I'm not sure why, or what I did, or if I did anything, or didn't do something.  It's more about figuring out what to do now that it's happened.  I think that's probably the key to a lot of life actually, it kind of makes more sense doesn't it?  Like being famous is one thing, but it's how you handle fame that shows your real character?

I'm not sure how to handle things a lot of the time.  I guess that's the truth.  I get told I'm strong, and that I do it well.  But I'm not sure they're right.  It doesn't feel strong.  It often feels helpless.  I wonder if people know that?  I'm not sure about things like fate, but it seems like I was not in control of this cancer when it came, and I'm not in control of how to get rid of it either. It's just happening.  In realtime. Whether I'm strong about it or not.

Now that I think about it, I wonder if people even mean it when they say it?  Am I strong, or do they just not know what else to say?  Is it because they don't know how they could handle it....because I guess the thing is, the terrible things in life, we don't envision them or strive to be able to handle them.  They're always a surprise, a twist, a curveball.  They just happen.  It's a lot different from the positive things, the ones we plan for, work at, achieve.  It's that instant change, that moment where something so big happens, where your life is turned upside down and everything just sort of stops - it's those moments, where you feel scared and upset, and no matter what age, like you need to turn to the closest adult so they can envelope you in a hug with the reassurance that this horrible thing isn't really happening.  Those moments apparently become defining to a certain extent.  Sometimes I think my ignorance and naivete in that arguable biggest moment in my life, got confused with strength.  Sometimes I worry that I'm not actually what people think I am, like when I find myself alone and crying on public transit.

I'm not strong.  Most of the time I'm just remembering the very basics of my existence.  Breath in, breath out.  Put one foot in front of the other.  Just keep swimming. 

Sleep

There's this totally super cute saying I saw on Pinterest.  It's like word art, room decor for a little girls nursery.  It goes, "Let her sleep, for when she wakes she will move mountains."

It's actually derived from a quote by Napoleon.  Except he was talking about China.  I'm pretty sure most people re-pinning that cute scripture, ordering wall decals to lay out over a crib don't know that.  And it doesn't really matter, because it's cute, and it gives you hope that one day big things will happen.  Let her sleep.  Enjoy that quiet.  Allow bigger things to develop.  Because they will.

When Evie was born, I would watch her sleep for hours.  On my chest, on my lap, in her crib, in my bed...I could watch her sleep all day.  I would watch her go through the process of falling asleep: become heavier in my arms, her breath slowing down, little wimpers every now and then.  Have you forgotten about the infant startle reflex?  It's quite possibly the cutest thing to witness.  They grow out of it of course, so you kind of have to cherish it and pay attention while it's happening....I guess thats most things with kids though right?  Sleep holds an innocence, a sweetness...and all just feels safe and right. 

Sleep though, has taken on a Jekyl and Hyde persona (personas?) for me.  It's kind of the the good, the bad and the ugly all at once.  Sleep has become something that is ya know, only ok in doses...too much of a good thing never works out, ya know?  Sleep has become a sign of something developing, of something bigger, just not something good. There is an obvious difference between the good sleep and the bad sleep, obviously. This is something that happens daily, and it's not like I'm worried everyday (ok, well maybe a part of me is worried everyday, but that's just about anything, not this specifically).  So the normal, every day night time sleep...is good.  The bad though, the bad is when she just doesn't feel well.  Her cheeks are pale, her eyes are dull, her energy level is just enough to turn over on the couch and find a new comfortable position...before falling back asleep for hours. 

When Evie was 2 1/2 years old she drifted asleep.  It happened over a period of a few weeks.  I knew something was wrong, but it was such a gradual decline it was hard to diagnose.  It wasn't until I showed up in the ER for the 3rd time in 2 weeks, with a little girl completely out in her stroller, in her 18th hour of consecutive sleep that I got their attention.  Finally there was no denying, something was wrong.  The next time the sleep started I was ready for it.  Despite not being a "normal" symptom, I recognized it.  This was her pattern, and it was starting.  She was sleeping, had no energy...and I wasn't taking no for an answer, I knew better.

And so she went again from the scary, endless sleep, to the normal, relaxing, beautifully calm sleep again.  And as soon as the transition was made it was obvious.  It was just different, and it was better.  On the inside I could slow down, be comforted in the fact that my little girl was in fact just sleeping, and not drifting far away from me. She was just sleeping again.  And I could watch her, and dream of the bigger things to come.  The mountains she would move.  

Strange thing though?  I kind of get the feeling she's already moving them.

The night it all changed...

I have told Evie's story a lot.  Over and over again really since the day she was diagnosed.  I told it when I had to call friends and family members and explain to them what had happened.  I've told it to various doctors, nurses and medical professionals who all want to hear it from my perspective, party so that they know the "what" and the "how", but also to look for discrepancies, and clues about the "why".  I've since told it to strangers, who have become friends - the families I have met in clinic -  and as I recited it, I watched as they compared notes in their heads to their own experiences, their own story. 

Evie's story is simple really.  She was perfectly happy and healthy...until she wasn't anymore.  She was six months old when we had our first family of four trip to Whittamore's Farm.  She was six and a half months when she was diagnosed with a brain tumour at SickKids.  Just like that - it all just changed.

Those of you who were there, for the beginning and for the first two years will remember that Evie had nystagmus.  I explained it as best I could, but to say her eye was shaking...well, to understand you really had to see it.  The doctors referred to it as rotatory nystagmus: her eye shook in a circular (but not fully circular) back and forth, like the way you dial a rotary phone...just, well, faster...and non stop.  I guess it's not the easiest thing to understand. 

It was during bath time on October 28th, 2010 that we first noticed the nystagmus, though we surely did not know it by this name.  I remember clearing the table after dinner, getting the dishes ready when Paul called me to the bathroom and asked if I had noticed her eye.  As we looked down at our little girl, still cradled in the tub by a mesh bouncer, we watched as her left eye shook rapidly.  I tried to downplay it, partly because I was just too naive, too ignorant.  Probably because in that split second, the thought of something actually wrong was not even possible.  But Paul knew better.  He knew things I didn't.  Not to say that he thought the worst then and there, nor would he have known what the worst could even be, but he knew it wasn't right.  After talking about it for a few minutes, I did what any Mom would probably do.  I called my Mom.  Once she admitted that she really didn't know, and didn't really understand what I meant, I made the next New Mom move.  I calmly took advantage of the system we have set up, and called TeleHealth.  And then, while on hold with them, I sat down at my computer and googled. 

You should never do that.  Don't self diagnose.  You'll drive yourself crazy and become a total paranoid hypochondriac.  Funny thing is, what I found when I googled, was basically right.  But there I was, naive and ignorant, and dismissed my findings of neurological problems, because...well, that was way too serious of a thing to even have happen.  As if.  Once TeleHealth ruled out any immediate danger, and suggested I take her to the doctor in the morning, I felt better.  Not great, but better.  Worried.  I felt worried. 

I know we tried to go to bed normally that night, but the worry did take over, and I couldn't.  I wasn't sure what was wrong exactly, but by then I was convinced it must be something.  Evie seemed fine, she was happy, nursing well, no different really.  But her eye just hadn't stopped shaking.  And the more I watched...that pit in my stomach grew.  Now, I am awful at describing things sometimes.  I can't explain how food tastes, I just can't make the connections.  I had this feeling that it would be just my luck that I would take Evie to a doctor in the morning, and not really be able to explain what was happening, and when they looked, it wouldn't be happening anymore.  So, in fear of looking silly, I took two videos on my phone.  I made sure to capture her eyes in close up, so that there was no mistaking what we were seeing.  These videos proved to be really helpful to the medical team, who all gathered around my phone to watch - but they might not have been necessary, because the shaking was still happening when they checked her out the next day.  And it continued to happen for years. These are the two videos from that night...the night it all changed.  

Do you see what I see?

Covering her right eye.  "Evie, can you see me?"

"Yes Mama" she says as she touches my face.

Covering her left eye.  "Evie, can you see me now?"

"Nope."

Covering her right eye again.  "Evie, what do you see?"

"I see your nose, and your eyes.  I see you Mama."

Covering her left eye again.  "Ok Evie, what do you see now?"

"Nothing."

"Ok baby, good girl.  Now listen to me.  I love you.  I really, really love you.  Do you hear me?"

"Yes Mama."

"I love you Evelyn." I squeezed her tightly and let the tears fall down my face, squeezed her as
 much as I could before she wriggled her way off my lap and ran away to go play.  

It's been a month since I found out that she had lost vision in her right eye.

Like a dimmer switch, slowly fading away.

She is not scared, or at least not yet.

But I am.  I'm terrified.  It is so painfully difficult for me to imagine not being able to see.  I understand that many people suffer from vision loss.  I get that there is so many resources.  I am learning that there are many tools available to help in every which way you can imagine. But I don't care.  To me, this is devastating.  It totally sucks.  I hate it.  I don't want it to be real.  I'm angry that it is.  And if one more person tells me, "It's ok, she still has one good eye".....I think I might just smack them.

When I try to rationally think of why I am so upset about this, I'm pretty sure I know why....but what I don't get is why others are so quick to downplay it.  Are my closest friends and family simply trying to remind me that it can always be worse, or do they actually not think this is a big deal?  If you lost 50% of your vision, don't you think you would be a little concerned?  I mean, seriously...people get upset over glasses, even if their prescription is minimal.  I'm upset about ZERO vision, and I keep getting glass half full reactions.  I know they are upset, and I know they are trying to help, be hopeful.  But a big part of me just really wishes someone had the balls to just get pissed off along with me....instead of trying to make it better. 

When Evie was first diagnosed, we were told many things.  So many in fact that I was given a binder and reminded to take notes and write down my questions and concerns.   The main things I remember repeating to family and friends were: benign, non life threatening, slow growing, 60 week treatment, not surgical, maintaining vision was primary concern.  Those actually sounded comforting, manageable, less scary at the time.  However, in the past three years I have found out that benign really isn't benign if it is affecting the body in some abnormal way.  Non life threatening became life threatening and surgical a year ago when the tumour grew too large....which also proved it was not as slow as they thought.  60 week treatment has turned into 3 years and 131 days of chemotherapy.  Vision has been slowly diminishing.  Everything I was set up for.....it was wrong.  I held on to each of those things, until I had none left. 

It's not a blame game.  I do not fault any of her medical team, and I am not implying I was misled.  It's simply clearer to me now more than ever that this really is beyond our control.  We are doing what we can, but it's still totally up in the air.  It's not that I have lost hope, but I am surely disheartened.  

Evie losing her vision was almost like a line in the sand. 

This cancer, this tumour...this is no longer something that she will have "gone through as a small child, and won't remember".  It won't simply be something we tell her stories about.  It has now taken away a part of her that she will not get back. 

As if she hasn't lost enough already.

What's in a wish

It happened today. 

I got a phone call from Children’s Wish Foundation. 

Evelyn is being granted a wish. 

Even when I type it now, my initial instinct is to smile...but I quickly catch myself.  I stop, and I think twice.  

Evelyn is being granted a wish.  

I got a phone call from Children’s Wish Foundation.  

Children’s Wish Foundation.  

My daughter, is being granted a wish....because she deserves one...because she qualifies....because she has cancer.  

My daughter is being granted a wish, because she has cancer. 

I remember seeing the information in my binder when Evie was diagnosed.  It was under a section of helpful resources, things like camps and charities.  As I looked it over, I thought, “Oh that’s nice...but not for us”.  You see, in order to qualify for a wish, you not only have to have a life threatening illness, but you need to be three.  Three being considered old enough to express your opinion.  Evie was diagnosed in fall of 2010 – at 6 months old. Her scheduled 60 weeks of chemo would bring her to about 20 months old – still far too young to qualify.  This wasn’t upsetting; we just dismissed the whole idea right then and there and from then on, never really gave it much thought. 

Even as I watched other families I knew make plans for their child’s wish, I still dismissed it.  No matter how similar the diagnosis, I could always find a discrepancy, something that would entitle their child, but not mine.  I think in one way I just didn’t want to get my hopes up, simply to be knocked down again, but clearly I was also scared.  I was, and am scared of what it means to qualify.  I guess I’m even scared to admit to others that she qualifies as I  have kept this close to my chest for weeks now.  Something that really should have been so exciting, tweetable, facebook postable, calling friends and family...I think I’ve told two people.  I haven’t even told Evie!  My reasons for that are different, I feel she is too young right now, and we definitely do not need to rush her decision..but I wonder if it isn’t my own insecurities as well. 

I feel like I know once I tell people I will be reassured that this is a good thing...I know it is.  It’s a great thing.  I’m sure I will feel that even more once everyone knows, once the wish has been made, the wheels are in motion whatever they may be.  Evie will be excited, and she will smile and laugh and it will hopefully be something she can hold on to and remember for the rest of her time.  It will be a moment of happiness, and that in itself will bring happiness to me.  I know she will love it, and I know she deserves it.  But she just didn’t deserve cancer.   And neither did any of her friends.  And when I say friends, what I really mean are the amazing kids that have come into her life, but only into her life because they too have cancer.   Tobin, JamieLee, Jake, Kendra, Stella....they have each been granted an amazing wish, and though Evie’s will surely be equally amazing....I wish none of them qualified. 

I am not trying to sound ungrateful.  I am very excited about her wish, but there is a definite sadness as well.  It’s a reminder that my child is suffering through a life-threatening illness.  It’s a reminder that her treatment has been going on much longer than we ever anticipated.  It is also a reminder that even when we think we have reached a point of normalcy, this really shouldn’t be normal.  We are not in control, and we likely never will be.   Having a child with cancer is a reminder of that loss of control.  Every day. 

for the Bebo Blog

The following post is a guest blog I wrote for bebo mia - a Toronto based Fertility/Pregnancy/Parenting company. 

I remember the day I went for my 20 week ultrasound like it was yesterday.  Like many expectant mothers these days, I really wanted to find out if we were going to have a boy or a girl.  It seemed wildly important to have this piece of information...as soon as possible.  I thought that once I knew, I would be better prepared for the baby...I could set up the nursery according to gender, I could eliminate half the names floating through my head, and I could more importantly tell our friends and family so they could also prepare....and buy the right coloured cute things babies need.  You can probably already tell, I’m a bit of a Type A.  I like to be organized, I love making lists  (they usually have handmade check boxes beside them), and I love schedules….these things just make sense to me.  So despite really embracing the miracle that is pregnancy, and fully trusting the process of baby growing….I kind of figured – well, this is something we can easily find out….so why not?  In fact, I really needed this fact to ensure I had it all figured out.  I thought that knowing the gender, I would be prepared for parenting my baby.  And soon enough, a sea of pink flew throughout my house.  

Throughout my pregnancy I felt great ...I really did.  It helped that I had a very uncomplicated pregnancy, classified by one of my midwives as “boringly normal – which we like”.  I seemed to float through week after week with ease, gaining modestly, eating and sleeping well and feeling great.  At 40 weeks and five days, I went into labour, and within a few hours my daughter had arrived.  Evelyn was born at home, surrounded by family and midwives on a beautiful spring day in April 2010.  The labour and delivery had gone smoothly, and she was a perfectly respectable 7lbs1oz and 21.5 inches long.  

Over the next six months I watched my little baby grow...shamelessly in awe of everything about her.  I couldn’t get over how perfect she was, her tiny little feet, her big blue eyes and her reddish blond hair.  I quickly fell into the groove of mothering a newborn, had diapers and nursing down pat. My Ergo was my best friend in the daytime for housework, and I could easily fold my stroller one handed.  I watched my daughter meet milestones, and recorded them diligently in her baby book.  I wasn’t perfect, but I did feel like I had it figured out.  It all felt so natural, and I remember thinking on more than one occasion how lucky I was to have such a perfect family, and such a great life.  That’s how things felt – perfect. 
When they first told me, “We found something” my initial thought was – great.  I mean, we had been in the ER at SickKids for over 12 hours…..they had been running tests and not telling us anything all day….wasnt the whole point to find something?  I guess I didn’t really understand the magnitude, but honestly, how could I?  This was not in the plan, I was not prepared for this, and this was not supposed to happen.  As much as we fear the worst, in the moment that the worst is happening, I think we are all so blindly naïve.  Perhaps it’s a subconscious defense mechanism we all have, some kind of self preservation.  I never imagined that “something” meant tumour, or cancer.  Yet there it was.  Evelyn was diagnosed with a hypothalamic optic glioma – a Brain Tumour.  It was October 29, 2010 and Evelyn was 6 ½ months old. 

That diagnosis – brain tumour – changed everything.  In the course of a week, Evie had her first hospital visit, her first surgery, and her first dose of chemotherapy.  We walked the halls of the hospital a little like zombies as a parade of Oncologists, Surgeons, Therapists, Social Workers, Nurses and other specialists took turns “informing” us on our daughter.  We were learning a lot, a lot about someone we thought we knew everything about.  Though we didn’t quite realize it, we were also being thrust into a whole new world.    

It’s funny how something can be so devastating, and life changing, and horrific....and then over time become almost normal.  Evelyn turned 3 two weeks ago.  She is still receiving chemotherapy, and in the past two and a half years since her diagnosis, she has also had 3 surgeries, 11 MRI’s, 4 CT’s and dozens of appointments with the five departments that follow her at SickKids.  That world we found ourselves in has also grown, not only to include another medical team at Holland Bloorview Kids Rehabilitation Centre, but a support system of families we have met along the way, as well as many wonderful organizations who are dedicated to helping us, and our children. 

It took me a while, but once I was ready to become involved in the community I had found myself in I was shocked by a lot of what I learned.  Brain tumours are more common than you think, and they were popping up all around me…it’s like once I became aware….I noticed, my eyes were opened.  So that’s what I want to do – I want to open your eyes.  This kind of thing, cancer, brain tumours – they happen…all the time.  Brain tumours are the leading cause of cancer-related death in young people (under 20).  On top of that, there are over 120 different kinds of brain tumours.  They key to making treatment effective is research, and lucky for us, The Hospital for Sick Children is home to the only Brain Tumour Research Centre in all of Canada.  

Meagan’s Walk is an annual event that supports Pediatric Brain Tumour Research and SickKids. It was created by a Mother, who lost her five year old daughter to a fatal brain tumour.  Their goal is simple: to create public awareness about Pediatric Brain Tumours, and to raise money to assist in further research. How do they do it?  With hugs.  Every year participants gather together for a 5km walk – the destination?  SickKids. Together, we stand, hand in hand, forming a giant hug…a circle of hope around the hospital. It’s a pretty powerful message to everyone inside, and it’s a pretty awesome thing to be a part of.  Meagan’s Walk is doing it too….to date they’ve raised 2.7 million dollars for Pediatric Brain Tumour Research, and the walk is getting bigger every year.  The great thing about Meagan’s Walk is that not only are they doing such great work for such a great cause, but they are truly there for the families they are working to support.  They are in touch, they are friendly, they are welcoming, and they are ready and willing to help us. They are an amazing group of volunteers.  They are worth knowing about.  They are worth talking about.  They, and the kids they are helping, are worth supporting. 

www.meaganswalk.com

http://my.sickkidsdonations.com/TeamPage.aspx?EventID=114594&LangPref=en-CA&TeamID=358418