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. 

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.