Routine

 Routine

Sometimes I can't believe how easy it is to get into new routines, and how quickly you forget how it used to be.

I actually have no idea how many weeks Stella and I have been on the couch for…sometimes it feels like forever, but then I'll look at a picture from a cottage or trip and think, "was that really only 6 weeks ago??".  Seems like a lifetime ago.

We are so routine oriented now that sometimes I find myself forgetting that Stella is dying.  I know that sounds strange given what we're doing and what's happening to Stella, but we've got everything down to such a science now regarding daily visits, doctors appointments, meal times, med times, hours on the couch playing, diaper changes, etc. that it almost normalizes it.  Even though I'm cognitively aware of what is happening with Stella and can speak about it quite effortlessly (sometimes even eloquently), I feel like my mind hasn't quite grasped the permanency of death yet.  I am aware that the energetic, running, singing, mischievous Stella has already been lost in this journey, and though I've been grieving that loss slowly, her body is still here and her soul is still housed in this (almost unrecognizable), body.  The warm weight of her on my lap each day, the smell of her hair, the angle of her fingers is all so familiar to me now, it permeates every pore of my body.  I can't easily picture how life used to be before the couch, and I find myself actually enjoying spending so much time with Stella and Aimee and our friends.  In the face of this huge tragedy, I am sometimes happier than I've ever been.  

I've been trying to wrap my head around this twisted concept, and the only thing I can come up with is that the happiness comes with the sadness because the life we're leading right now is so conflicting.  On the one hand, we're losing our daughter.  We're losing our dreams for her, our hopes, our hearts.  What we're witnessing is completely, unbelievably tragic.  Yet, the raw pain and emotion has brought out the best in us, the community and the people we love.  Our home is filled everyday to the brim with family and friends who stop by for visits and chats.  Our freezer is overflowing with delicious meals lovingly cooked by friends, our table holds a stack of "Thinking of You" cards.  The toy box is full of new toys and stuffed animals and pictures from friends.  Stella has enjoyed lavish birthday parties, a Christmas party, numerous trips to cottages, Riverdale Farm, the zoo, playdates, trips to toy stores where she picks out anything she wants (including a battery-operated black mercedes car she tooled around the neighbourhood in for a few weeks).  We entertain groups of people we love everyday in the living room while Stella sits right there listening to us talk.  Last night a bunch of us girls sat around drinking wine and laughing our heads off until almost 11 at night, telling funny stories about life and work and High School.  All the while Stella sat interacting, entertaining and distracting us.  I'm delighting in spending so much time with so many people I love that it's hard to imagine life any differently now.  I don't remember what it's like to have a quiet day or night with no visitors, and Stella probably doesn't remember what it was like to live a life where five people at a time weren't tripping all over themselves to make her smile, just for a minute.  One smile from Stella goes a long way these days!

That's why, when I allow myself to go there, I'm becoming increasingly terrified about a life without Stella…because for the last 15 weeks my entire life, has been Stella.  Stella magnified and highlighted by trips, ice cream for breakfast, visits, puppet shows, laughter, love, community, family.  I try to imagine what I would do if I woke up one morning and she was suddenly gone, and the only thing I can picture doing is looking everywhere, until I find her.  I picture sitting on the couch and waiting for her to come join me for "snuggies", sticky ice cream kisses and Dora the Explorer.  I picture patiently watching her closely, anticipating those "good" windows where the gleam in her eye comes back momentarily, and she laughs before she does or says something she knows will get a big reaction from whoever is around.  I picture looking out the window with her when we hear a car door slam to see what fun person has come to visit us today, bringing treats and smiles and fresh energy.  I picture all these things, but, as hard as I try, I cannot picture her being gone forever.

Stella's decline seems to have slowed down momentarily, and so it looks pretty positive that she'll be around to meet her little brother next week.  The thought both thrills and terrifies me.  We didn't dare to guess when she was given three months to live in June whether she would still be here, or what state she would be in.  I always pictured her dying before her brother arrived, even though Aimee and I secretly hoped they would get to meet in person.  Now the reality of having a newborn baby coupled with a dying toddler is starting to feel a bit overwhelming to me.  Adding to the picture is the fact that my sister, who is completely adored by Stella, a daily visitor and huge helper, is also pregnant with her first child and is due next week as well.  So…in the next 10 days we will have two newborn baby boys added to the daily mix, and one newborn-like two year old to look after.  Even typing those words made my stomach churn a bit.  I picture my beloved routine turning into chaos and I feel scared.  

I wonder how we will manage.  

I wonder if we will be able to give both of our children the love and attention they need as one gains new abilities and one loses them.  

I wonder if Stella will ever even let me hold her brother or if she'll be too jealous.  

I wonder if I will be able to appreciate my son only for who he is and who he will become, not for the void he will help to fill when my daughter dies.  

I wonder if my son will be able to feel our intense love for him, even if we are grieving and sad some of the time.

I wonder if Stella will be happy about her brother, or upset that some attention is away from her.

I wonder if I will be able to love my son with the same wild abandonment and trust that I love Stella, or if losing her will make me afraid to love someone that much every again.

As always, there are so many more questions than answers.  Since the beginning of this journey we have had people telling us to live one day at a time.  This is good advice, but thinking days in advance is starting to feel like it's too much as well.  I think I might be living hours at a time for the next little while.  I think, just this once, I might have to give up on the idea of routines and planning and just let it be and have faith in myself, friends and family and the universe.  But boy, does it ever scare the crap out of me.

WAITING FOR BABY