Jenga

Jenga

It’s been 4 weeks since the Doctor told us Stella likely had 1-4 weeks left to live.  4 weeks since Aimee and I sat and wept over Stella’s pale and skinny little body as she lay sleeping.  4 weeks since we started to call some friends and let them know “this was it”.  4 weeks since ewe began the process of “letting go”---whatever that means.

Now, 4 weeks later after waiting and watching and holding our breath… Stella is very much still here, very much still alive, very much hanging on-- even as we are being urged to let go.

It’s a difficult, if not impossible, position to explain to someone who has not gone through watching someone they love die slowly.  You are torn between wishing they would be here forever, and wishing that their torture (and yours) would end.  Stella is not in any pain, and everyone is eternally thankful for that, but I still find it difficult to engage with her now.  The Stella I knew once is long gone, and although I love “this Stella” very much, I have been missing and mourning the old one for months already.  This Stella is only pieces of my old Stella.  They look similar, but my old Stella was much rounder and chubbier whereas this one is tall and thin.  Their laugh is exactly the same, but my old Stella laughed a lot more.  The hair is similar, but this Stella’s is longer and lighter.  They are both completely mischievous, with a great sense of humour and a smile that can stop my heart immediately.  This Stella gets cuddles all day and everyday, but the old Stella hated being held.  She wiggled away from hugs, dodged kisses, and sat on my lap only when she was sick, or asleep.  My old Stella pushed the other kids, stole their toys, dominated most games, chased, disobeyed, ran away.  This Stella watches other kids do this, but sits silent and still in my lap, unable to keep her head up with drool falling out of her mouth and soaking her neck.  The saddest thing is that I know all the pieces of my old Stella are still here---but they are being literally strangled to death by a relentless tumor in her brainstem that is ever so slowly cutting her off more and more from us.  Each time Stella loses another function, or has another “dip” in her cancer, I am forced to mourn a little bit more.  I know now that the grieving process for Stella will encompass years of my life.  It started June 24^th, 2011 and has continued ruthlessly day after day, month after month and shows no signs of abating or ending.  We still have so much left to mourn…it’s too overwhelming to even think about some days.  I keep wondering how much longer we can all keep going like this…I passed my limit weeks ago, yet as so many parents who have been through this before have told me, you just have to keep going. 

So we do.  Because you never know how much you can do, until doing it is the only choice you have.

Now we measure how “good” or “bad” a day is in terms of smiles, naps and bottles of milk consumed.  When someone asks, “How’s Stella today?” Aimee and I robotically answer, “Pretty good.  She slept three hours, smiled about 4 times and drank 5 bottles of milk” or, “It was a tired day for our girl, she smiled a couple of times, and had 2 bottles of milk”.  It’s a crazy thing to have such a vibrant life boil down to---smiles, naps and milk consumed.  Just like a newborn…except she’s not.  She’s a beautiful, smart 3 year old girl.

Waiting for Stella to die reminds me so much of playing that 80’s game Jenga.  You know Jenga and the old jingle… “Jenga, Jenga, J-j-j-jenga. you take a block from the bottom and you put it on top, you take a block from the middle and you put it on top. That's how you build the tower; you just don't stop. You keep building that tower putting blocks on top. It teeters and it totters, but you don't give up; it weebles and it wobbles, but you build it on up. You take a block from the bottom and you put it on top, you take a block from the middle and you put it on top, till someone knocks it over, and that's when you stop…”  For me, Stella is that Jenga tower, where pieces keep getting removed and you hold your breath as the tower shakes, and can’t believe it’s still possible to be standing there, even with all those pieces missing.  Then, even though you knew it was coming, suddenly the tower comes crashing down in a pile of wooden rubble, startling and disappointing you.  I keep looking at Stella, lying here on the couch next to me, and wondering: “How many more pieces can this tumor take from you before you are reduced to a jumble of pieces like a Jenga tower?”  But Stella won’t tell me.  She just looks up at me with her big blue eyes and stares directly into my soul, daring me to ask more questions that she will refuse to answer.

4 weeks is over.  We were all wrong again.  Stella didn’t live 3-4 months.  She didn’t die 4 weeks after they told us she would.  Stella isn’t dying right now, Stella is still living, still building her Jenga tower of smiles and surprises.

Stella continues to teach me things everyday, and maybe that is why she’s still here--- because she knows I still have so much to learn from her.  Today’s lesson…when we can’t change a situation, we are forced to change ourselves.  And so, Dear Stella, I am trying hard to keep up with you today and will try again tomorrow.  And for the next 4 weeks.  And the next 4 weeks after that.  And the next 4 weeks after that, for as long as you need me.  And when you don’t need me anymore, I will still be here trying my hardest to live the life you taught me I should be living--- one of raw honesty, pure love, overwhelming gratitude and no fear. 

We must let go of the life we had planned so as to have the life that is waiting for us - Joseph Campbell

 Stella plays piano at Gracie's house:

Stella helps Ray celebrate her birthday:

Gracie paints Stella's toe nails for her:

Stella and Sam baking cookies:

My heart lives here: