Living with a brain tumour

 Living with a Brain Tumour 

I was reminded by a very good friend last night that Stella is not "dying of a brain tumour" at the moment, she is LIVING with a brain tumour.  That really struck me.  Stella has no idea what the future holds for her, so right now she is simply living each day to the fullest and having the best summer a 2-year old could imagine.  Sometimes I picture her thinking to herself, "I knew my mommies were holding out on me all those times they sent me to daycare!".  Now her days are filled to the brim with trips to the park, Riverdale Farm (her absolute favourite!), playmates with friends, lots of cottage trips and all the ice cream you can eat.  I've never seen her so happy, and it really contrasts with my own face in the mirror which looks so old and haggard nowadays.  Stella is living…so ironic since often I feel like I'm the one who is slowly dying…she is so damn ALIVE and Aimee and I want soooo badly to keep up with her.

I think the trick for us is trying to learn to love each day with the same abandon that Stella does.  As her parents, we know too much of what the future holds…that soon our daughter will begin to lose her ability to walk and talk and eat and breathe…we find it difficult to find freedom in the absolute bliss of childhood that Stella is experiencing right now because we are dreading the future so much.  Living one day at a time sounds easy to do, but in reality even living one minute at a time sometime proves to be too much of an effort.  I think about how busy our lives were just 6 weeks ago…both parents working full time, both of us going to school part time, rushing here and there and everywhere.  Now we are suspended in time…not moving forward, yet not moving backwards either.   Most times I have no idea what day it is, if it's a weekend or weekday, morning or afternoon.

I think in the years to come when I look back at our time with Stella, I'll always think about her laughing.  She has such a free laugh, the kind of laugh that us adults wish we could have all the time…those honest-to-goodness laughs that shake your belly and open your mouth wide as though you can taste the laughter in the sweet air.  Her laughs are genuine and free and frequent.  Having spent so much time with Stella in the last month, I feel like I've really gotten to get to know her.  I didn't realize until recently what an absolute ham she is.  I didn't know that her favourite flavour of ice cream is vanilla.  I didn't know she liked the colour pink or that she adores birds.  It's an odd feeling to THINK you know your child and everything about them, but then to realize that isn't true.  This time we've been given with Stella is a precious gift, but I'm almost afraid to open it anymore because it already cuts my heart into a million pieces to imagine life without her.  She's still here, she's still "her" and yet I miss her terribly already in all the thoughts about my future.  I sometimes wonder if I'll ever be able to look at the other kids in the playground without feeling bitter and jealous…I wonder if I will ever celebrate a birthday again (Stella and I share the same one).  I wonder if my heart will ever stop hurting.

There was a story about Stella on Global News Tuesday night (check out "for Stella" link if you didn't get a chance to see it).  We watched it and were both awed and horrified.  Awed at the amazing people who came out to a fundraiser for our daughter, and horrified that this was our life that was on the 11 o'clock news.  That is was really our daughter that the newscaster narrated was a "normal two year old" with a "brain tumour who has three months to live".  Sometimes Aimee and I just look at each other in disbelief that "those people" are really us.

We are so lucky to have such incredible families and networks of support.  I have no idea how we would do it if strangers and friends didn't continue to let us know on a daily basis that they care about us and they want to help us make sure Stella's life, short as it will be, is going to totally kick ass.  I feel helpless a lot of the time, but I never feel hopeless and, on most days, that makes all the difference when it comes to getting out of bed and greeting our daughter with a smile.

Off to another cottage this weekend, off to make more memories, off to eat more ice cream and experience life through the eyes of a two year old with no fears and no worries.  Laughing little imp. Wide mouth, little white teeth, mop top of curly hair, LIVING with complete abandonment and reminding us with each smile that for one more day at least, we get to hear the music of her laugh echoing off our hearts.