In the Moment

In the Moment

I've been much happier recently.  At first I struggled to figure out why because the reality is that Stella is still declining everyday and slowly breaking my heart with each of her smiles.  Yet recently I've had moments of happiness that are not tinged with jealousy, sadness, rage or even grief.

A couple of days ago is the five-month anniversary of when Stella was diagnosed with DIPG--- one of the very few cancers that actually has a 0% survival rate.  She was given 3 months to live, so 5 months in it feels a bit like this is a marathon of waiting and watching.  Consciously I still know she is going to die, but something has changed in me.  Something happened when the last fall leaf hit the ground and I looked down at the little girl sitting in my lap.  Not so little anymore.  All of her pants are way too short, because as much as the cancer is eating away at her brainstem, the rest of her is growing up and that means she is getting taller and leaner and older looking.  It's a bizarre dichotomy to have your child physically growing and shrinking all at the same time.

Just over a week ago I spoke to the palliative care doctor about Stella.  I was almost angry as I demanded know why Stella still seemed to happy.  "Why!???" I wanted to know, "Why is it that this kid who can no longer walk, talk, sit up unassisted, feed herself, whose sight is declining and who can't swallow most of her favourite foods each day, still laughs and smiles and tells jokes?".  I felt upset on her behalf, but also so confused.  "Don't you KNOW????" I want to say to her, "Don't you know what a raw deal you got?".  But the truth is, she doesn't.  The Palliative Care Doctor (who, by the way, is absolutely incredible) said that Stella has no frame of reference for what she is no longer able to do.  She isn't old enough to remember too far into the past and she has no immediate concept of the future or what she "should" be able to do.  For Stella, life is lived only in the moment.  If in the moment she is surrounded by love, fed, cuddled, comfortable, pain-free, then she is happy.  It's a comforting thought and has the very welcome effect of, for the most part, dissipating my feelings of anger and frustration.

Live in the moment.  This is an interesting concept to me.  All along people have been encouraging me to "live in the moment", which is not exactly an easy task considering both Stella's past and future.  How do you live in the moment when you are fully aware that sometime soon your heart will be smashed into a million pieces, stinging and cutting every pore in your body?  What if "the moment" is scary and sad for you?  But when I cry into Stella's curls on the couch, I cry alone.  She isn't sad.  She isn't mad.  Heck, she isn't even as frustrated now as she used to be when she was "well".  So, I decided to try to follow her lead.  A first for me since my natural inclination is to make her follow my rules.  So, for the last week each morning when I woke up, I would look at Stella and say (out loud), "not right now".   This was an audible reminder to myself that we will all die someday, but probably not at this exact moment.  One day that will change but…not today.  I tried to try not focusing on everything we stand to lose, but instead pay closer attention to the moments that I want to remember because they are wonderful and special.  And I found that, as soon as I started looking, there were beautiful and special moments everywhere.

Stella is quiet most of the time during the day, but often at night she'll get a mini burst of energy that lasts about an hour in which she is suddenly quite alert and awake.  During these moments, in a halting voice, she will tell knock knock jokes and try to bite your nose.  She will mischievously pull your hair and laugh when you say, "ouch!".  In one slow, long, run-on sentence, she will ask you to please put on Dora, get her ice cream and take her for a hamburger.  She will fill your arms with warmth, fill your eyes with a brilliant smile, and fill your heart with sticky lollipop kisses.  She will make "this moment" a special one, even if all she's doing is holding your hand.

On Saturday night, Andrea and Julia and Gracie slept over.  Two of our best friends in the whole world, Ray and Brad, came for dinner.  After everyone ate, Brad pulled out his guitar and played and sang.  We naturally formed a circle in the living room and before long, the room was alive with laughter, singing, dancing.  Stella was in the middle of all of it, grinning from ear to ear and awkwardly throwing her torso from side-to-side on Juju's lap, "dancing" and smiling while Gracie did a version of the can-can next to her and the adults laughed so hard we could barely catch out breath.  It was one of those perfect moments that should be recorded in your brain and played back on the days when your load feels too heavy to bear.  I savoured the smiles on everyone's faces, I picked Stella up and we danced together across the room, I watched in delight as Gracie did some toddler version of break dancing.  The room was electric with good energy and life.

I have started collecting these moments, these times when I can "see the forest for the trees", as my friend Tasha likes to say.  I am packing my brain and my heart with these days, trying to live like Stella with no regrets for the past or fear of the future.  I can't always do it.  If I think about living without her, my breath still constricts in my chest in a great firecracker of pain, but when I focus on "the moment", I smile and mean it.  I love and feel it.  I believe and hope for a bright future with Aimee and Sam and our guardian Angel.  

Stella exists in a little nest on the couch made of blankets, pillows and love.  Most of the time, Aimee and I live there with her, but I've also started to venture out on my own without her.  Whereas a few months ago Stella wouldn't let me out of her sight, now she will happily stay with Aimee on the couch while I venture out.  It gives me a sense of normalcy to have tea with friends, ride the subway downtown, get a book out of the library.  On some level I wonder if Stella is starting to let me go, to prepare me for life without her.  Sometimes when I'm out and swept into the "real world", I think I will be okay.  I reason that even though I will miss her terribly, I will get used to life without her and carry on and find other things that make me happy.  Sometimes I can think that.  Other times, I miss her so much I can't even see the sidewalk because of the tears blinding me.  I run home and sweep Stella into my arms, taking deep breaths of curls and porcelain skin, needing the reassurance of her breath against my neck to ground me.

At this moment, Stella is fast asleep in bed next to me, curled in a ball with her snowman necklace and her Dora shirt on.  Aimee is reading the newspaper and the soft glow of the computer screen is casting a lovely white light on our walls.  Sam is fast asleep in his crib, snorting and farting away the way only a newborn can.  There are Christmas decorations on the neighbours lawn that fill me with a sense of excitement and sadness at the same time.  In this moment there is love, relaxation and a sense of calm surrounding us.  

In this moment, we are at peace.  

"Life is not measured by the number of breaths we take, but by the number of moments that take our breath away"

Funnily enough, if this is true, Stella will leave me breathless.

A NIGHT WALK

SAM AND XAVIER SHARE 1-MONTH GOSSIP

FAMILY