Someone Said...

Someone Said...

Sometimes people say things and, for better of for worse, you continue to hear the echo of their words in your head.

This week, someone said to Aimee and I, “…you’ve got to get back to the land of the living.  Don’t just sit at home day after day waiting and watching for Stella to die.  That is an intolerable way to live”.  This person was so, so, so, so right and has given us a little boost of energy and optimism to get of the couch and try our best to make the most of what time we have left with Stella.  It is completely intolerable to sit hour after hour in the living room with the air conditioner humming, the TV droning on in the background and Stella breathing steadily in and out, staring at the wall while Sam practices his crawling and plays with his toys inside for hours on end.  We may have a few weeks left with Stella, we may have more, but we decided it would be nice to enjoy this last summer together as a family, in whatever ways possible, instead of just crying in the dark house while life buzzes around us outside.

So…this week we pushed Stella, and ourselves, to live a little.  We went to Thunder Beach (Aimee’s family cottage area) twice, camping at Sibbald Point and small day trips to Riverdale Farm, Sobey’s, the local farmers market, etc.  All have been successful (to various degrees), and all have made Aimee and I feel a little bit more in control of ensuring Stella has the most opportunities possible to continue to live, even as her body is dying.  And she has responded beautifully. 

I often think that what sets Stella apart is her refusal to do what everyone expects of her.  And she has been that way since birth.  Literally, since birth she has defied what every baby book, sleep expert, behavior specialist has said a baby/toddler should be doing.  So, when Doctors say she has 3 months to live…or another few weeks…or whatever, she doesn’t let that stop her or dictate what he does.  When we push her or challenge her, she never backs down.  I’ve mentioned before that I hate the term “fighting” when it comes to cancer or living, as I don’t think it’s something to be won or lost, but I have to say that Stella is doing her own version of a fight…which is more like a rebellion.  She rebels against expectations, against barriers we have inadvertently built for her, against every “Stella can’t…” that we have vocalized.  I just find her strength and perseverance amazing.    

I try so hard to follow her lead each day but, personally, it’s still a struggle for me.  I wish I could sit here and write that seeing Stella laugh as she lay in her red wagon, propped up by multiple pillows while Gracie pulled her wildly, was enough to fill my heart to bursting with love and appreciation, but that would be a lie.  I want to be able to tell you that seeing her eyes widen with joy when her favourite song comes on the car radio and she moves her head ever so slightly to the right in her version of “dancing” makes me laugh out loud with joy, but it’s not completely true.  It would be wonderful to say that the glow of the campfire on her beautiful face as she roasted her first marshmallow melted my heart and made me smile for hours afterwards, but that would be leaving some feelings out.  These things are true, but the emotions that come at this time are not as simple and pure for me as they seem to be for Stella.  For me…all this still isn’t good enough.  And I feel guilty for thinking that, and for saying that, but I still get stuck sometimes thinking about how it SHOULD be.  How instead of lying in the wagon, she should be running next to Gracie along the dirt road, both of them kicking dust up with their heels and giggling hysterically.  I see her sitting on her beanbag chair, still and mute as we pack up our tents from camping and think about how she should be hiding in the forest with Flora on a scavenger hunt while we shout at them to stay in sight.  I want her to be running and laughing and skipping and talking and doing all the things that a 3-year old is supposed to do.  All the things we pictured her doing when we looked down at her in our arms as a baby, her plump cheeks rosy, her little chest rising and falling, her life full of possibilities and promises, all seem so empty now. My throat closes with rage and hurt when I imagine that she has been robbed of her life and her childhood by one of the rarest cancers in the world.  That all those people who love her will be forced to live the rest of their lives mourning her.  That her brothers will grow up with parents whose hearts are permanently broken.  I wanted so much more for her, and giving up on those dreams continues to be a challenge for me, although the acute pain I felt last summer has dulled somewhat to a constant ache. 

I am happy to see my daughter smile, and Aimee and I will drive 5 hours in one day just to make it happen.  I am grateful to have had so much time with Stella.  I am thankful that she can still get enjoyment out of life and spend time with the people she loves.  I guess I just wish the reality was different.  But it’s not, and even a year after Stella’s diagnosis, this is still a bitter pill to swallow.

I have to constantly remind myself that my primary job as a parent is to ensure that Stella is comfortable, well taken care of, loved and protected.  The rest of my dreams and wishes for Stella are just that--- my dreams and wishes---not hers.  So as we continue to navigate this unknown journey of learning to live with dying, I find comfort in looking at the pictures form the last week (we took 800 photos in one week!), and seeing that the happiness she is getting from her life is as uncomplicated and pure as that first moment Aimee and I laid eyes on our newborn daughter, not that long ago. 

Someone else said something to me a year ago that has been echoing in my head all week.  When I said, "No!  You are too little to climb to the slide by yourself", a defiant and fiery toddler leaned over at the waist, narrowed her eyes and said,  “No Mama!  I don’t like it when you say ‘No Tella’ to me.  I do it.  Tella do it".  

Yes Stella, you certainly have.

Some of the pictures I’ve been looking at from the past week…

Watching the sun set:

Flora and Stella cuddle and look at books:

Flora helps give Stella her bottle after they fell asleep under the stars, camping:

Swimming Stella:

Family Boat Ride at Thunder Beach:

Stella in the kayak being pulled around the lake:

Sleeping Cousins: