Letting Go

Letting Go

“You have to start letting go”

These are the words that were told to Aimee and I just under a week ago.  Although I know exactly what the person was saying and why, I felt so angry at hearing the words spoken out loud.  They sounded shocking, jolting even.

Let go. 

I’ve been letting go for almost a year now.  I’ve let go of my dreams for Stella’s future, I’ve let go of the visions of her playing soccer and running in the schoolyard and jumping off the Dock at our friends cottages.  I’ve let go of the plans we once had for our family, the thought of Stella being a tough, protective older sister that kicks anyone’s butt if they tried to harm her younger sibling.  I’ve let go of trying to understand why us, what did we do, what did I do,. I’ve let go of my job, I’ve let go of 90% of my social life, I’ve let go of my self-indulgence.  I’ve let go of Stella’s ability to walk, sit, hold her head up, talk, use her arms. I’ve let go of almost every part of my daughter and her personality, and now I have to let go of what’s left… a shattered pile of shining blue eyes, random smiles, soft curly hair and warm porcelain skin.

Let go.  I don’t know how much more letting go my heart can take, yet here we are being told, by those who know, that the worst is yet to come.

Stella has surprised all of us, including the Doctors, with her desire to live life to the fullest and ignore every rule of how and when she should be getting sicker and dying.  But Aimee and I never once fooled ourselves into believing that she would live forever, and now what once seemed foggy and far in the distance is creeping closer and closer, the how’s and when’s becoming clearer.  The window of time we have left narrowing with each passing week.  The walls are closing in and they are suffocating us as they tighten around us.

For the last three weeks Stella’s energy has languished.  Her interest in doing much of anything other than sleeping and sitting silently on the couch has all but disappeared.  It is a daily struggle to pry her mouth open for food and drink.  She just won’t unclench her teeth most of the time.  She sleeps off and on more and more.  She is unable or unwilling or uninterested in interacting with us, or others, a lot of the time.  Usually when I look at her now I keep thinking how tired she looks.  How skinny her arms and legs have become with no muscle tone whatsoever.  How when she sleeps her skin takes on a translucent look with her mouth open, her tongue hanging out and her eyes still half open as the tumor doesn’t allow them to close all the way anymore.  Our tough little girl suddenly looks so little and fragile.

Our beloved Palliative Care Doctor came over yesterday.  We knew it was going to be a hard visit as he had been watching and waiting along with us over the past three weeks to see if she would have a  “miraculous bounce-back” as she has so many times before…at least 6 or 7 times before, the little rascal.  But after three weeks of lethargy and declining interest in the world around her, after hearing how her breathing patterns change sometimes and how unfocused she gets, we all came to the conclusion that we have entered a new chapter in our time with Stella.

That long feared for chapter called, “Letting Go”.

More than likely there will be almost no more traipsing to Riverdale Farm.  She may or may not ever go swimming again.  We may get to Sobey’s for avocados one more time, or we might not.  Every “first” can also be a “last” and every “one more time” could be “the last time”.   We expect that this next stage of Stella’s cancer will be the watch and wait stage.  The stage where we can offer no more to her than warm arms to hold her, loving hands to give her food and drink whenever she feels like it, our voices to remind her of her life with us.  We sit with her and tell her the story of how she was born, retell stories of all the fun things we’ve done and repeat over and over again how she is loved so much by so many people.  This stage is where we start to create distance between ourselves and the outside world, to cocoon and shut the door, to not return calls or emails for awhile and never look at the calendar or clock.

The Doctor said that in his experience the time we have left with Stella is between 1 and 4 weeks.  Knowing my daughter, I wouldn’t be shocked if she doubled the expected timeline, but the truth is whether it’s one week or eight or twelve doesn’t matter that much to me.  No matter what it’s unfathomable.  Too hard.  Too sad. Too unfair. Too soon.

I’ve started to have vivid dreams about Stella almost every night.  In my dreams, Stella is running around and is so happy.  Last night I dreamed we were at the park and she was running up and down the slide when suddenly she pointed behind us and I turned and saw Barney (that unforgettable big purple Dinosaur) performing just behind us in the tennis courts.  She and I raced to see who could get to him first and her cheeks were so rosy as she ran in front of me, her curls whipping in the wind, her strong legs propelling her faster and faster.  She beat me there and turned around to give me a huge triumphant grin before launching herself into Barney’s arms and proudly showing off her prize for winning (it was a singing Barney stuffed animal…of course!).  When I woke up and looked over at her lying so on the pillow next to me, her body weak and tired, I closed my eyes again and tried to get back to my dream.  But sleep wouldn’t come and so I just lay there and stared at her trying to imagine a day when I couldn’t hear her soft breaths next to me anymore. 

Aimee and I agree that we both feel selfish about our time with Stella now.  We want to just take turns holding her in our laps and spending time with her.  We don’t care about cooking, cleaning, visiting, keeping up with emails or returning calls.  We just want to sit and enjoy our family, to create a nest and just be in the moment without thinking too much about the coming days.  We are trying to keep it quiet for ourselves, and Stella, right now. So we turn the TV off a lot of the time and just focus on being present.  We sit outside on a blanket in the sun, or sit on the couch and talk quietly.  We read books.  It’s actually been nice to have some quiet family time recently.  It’s been hard for me to stop trying to push Stella to do things and pester her to go on walks or to the library.  I sometimes think that if she would only push herself to get there, she would light up and smile again once she remembered how fun it is.  But Stella knows better than me what she needs…she always has.  And what Stella seems to need right now is quiet time with us to just BE.  No games, no TV, no outings.  Our only job right now is to listen and love and live for today.  If only I’d breathed those words my whole life, I’d probably have been a much better person. 

We’ve always known we only have “today”, but the message is louder and clearer this week.  I have no idea how the next weeks are going to play out.  If Stella will continue a slow decline and her light will burn out slowly, like embers in a fireplace, or if she will suddenly shut down like a candle being blown out.  Or…there is always that distant hope and possibility that she will defy convention again and bounce back for another few months of laughing in the sun.  Not matter what, we will all travel the path next to her, right until the very end.

Our star is still shining brightly, but she’s just getting a little bit further and further away from us and a little bit closer and closer to her permanent home in the sky. 

And Aimee and I both know, there is no easy way to get from the earth to the stars.

Stella sitting in her new beanbag chair:

Stella in her wagon...Sam being a little brother, pulling her hair:

Sleeping in Auntie Juju's Arms:

Sleeping in Poppa's arms:

Stella and Gracie painting in the front yard: