In Here and Out There

In Here and Out There

In here…

A few days after Aimee's post about fear, we were again plunged into moments of scary despair.  Last Wednesday, Stella started to have a bit of a slow day.  By Thursday, she was sleeping all day and that night she spiked a fever.  By midnight, she had a fever of 103, and was having what were confirmed by our Doctor the next day as seizures.  They were terrifying to watch.  Lying in bed, her eyes would roll back and her entire body would tense as straight as a board, her hands forming hook-like shapes.  Her back would arch and her mouth would foam like a rabid dog.  We could do nothing to help her, and in those moments, she looked so very, very sick that we were paralyzed with fear.  I couldn't stop crying.  We finally got the fever down and gave her enough medication that she was able to relax and fall asleep.  But sleep eluded Aimee and I, who simply gazed at our little girl, again feeling that disbelief that we would have to face a future without her.  It's hard to believe that everything about this child is absolutely perfect, except for a tumour on her brain stem which is the size of your baby finger nail and is slowly robbing her of her faculties and life.  How monumentally unfair.

On Friday, Stella spent the whole day sleeping.  Her palliative care Doctor came to see us, and again we were faced with difficult decisions regarding whether it was time to put a port in her arm for medications, whether if she had an infection that was causing fevers we should treat it, whether it was time to start anti-seizure medication. etc.  etc. etc.  As always when we have a difficult day, I wonder if Stella will bounce back, or if this is the cliff we have been dreading and looking for over the past 7 months.

Out there…

Stella perked up on Saturday.  She has done this to us so many times, it's almost comical.  She scares us for a few days, we watch and worry, and then one day she wakes up with a big smile and demands for a bottle and toast.  She was well enough that I felt comfortable leaving the house for the first time in four days.  I had decided to go to the Eaton Centre (with Xavier) to spend some of the gift certificates I had collected over the past year.

As I got to the subway with my stroller, I was flooded with memories of when I was on maternity leave with Stella and used to take her to this same station to ride the subway.  Other than the chid in my stroller, it all felt strangely familiar to me.  Bouncing the stroller down umpteen stairs while able-bodied strangers rush past. Shoving a bottle in the baby's mouth with one hand, while steering with the other.  Making goo-goo gaa-gaa faces and noises and pushing the stroller back and forth while you wait in line.  Waiting for what seems like forever for the very few elevators at the Eaton Centre to take you to another level.  

The Eaton Centre itself was a blur of light, noise and sensory overload action.  I have never felt so much like a tourist, observing everything.  It's been months since I was at the Eaton Centre.  But it also felt comforting in a way.  I was blanketed by the anonymity of being in a huge mall.  Nobody there knew me, or Stella, or our story.  I was treated with disinterest by the sales people and, even though I never for a single moment forgot my life circumstances, I felt as though I had shed the Scarlet Letter of "mom of dying child" that is permanently tattooed to my forehead--- at least for a little while.   It was nice.  I had fun, I felt free.  Retail therapy turned out to be good for me and Xavier proved to be a perfect shopping partner, smiling on cue and staying silent when I needed him to.  I was just like all the other dozens of moms there, pushing their strollers at cooing at the babies inside.  I felt like an actor on stage, but I was pleased with my performance.  "See!!!" I wanted to shout, "I'm still normal!  I can be here, I can do this".  On the subway home, the woman across from me was trying to balance eating McDonald's Chicken Nuggets with a drink.  At one point she dropped a McNugget on the subway floor and cursed out loud.  She looked so angry and was clucking her tongue and furrowing her brow.  'Relax lady", I wanted to say, 'it's just a McNugget'.  Suddenly, I felt tired being out in public.  I have no more patience for people gossiping about their bosses at work, rolling their eyes about the lineups at the store, complaining that their daughter picked out clashing clothes for preschool that morning.  Somehow, being "out there" felt like a shirt that didn't quite fit anymore.  I returned home in the early afternoon to a smiling Stella, and felt relieved and content to be back where I wanted to be.

Later that evening, Aimee and I went out for a long-planned dinner together.  We had a good time--- we drank wine, laughed, ate good food.  Again, we appeared to anyone watching to be a completely normal couple out for dinner.  I looked around the restaurant and wondered if there were other people there that carry a burden of grief.  I'm sure there were, but everyone's eyes were fixed on their plates, so I couldn't see the dark shadows and lacklustre eyes that I always see in the mirror.  For the most part, Aimee and I talked about mundane things.  We played our parts well, and it was really nice to connect again, just the two of us.  As we were driving home, holding hands and laughing about the waiter at the restaurant, we got a call from Aimee's sister.  Stella was having seizures again.  We sped through the dark streets and I felt so guilty for going out and for not being there when Stella needed us.  But by the time we got home, the panic had subsided.  Andge had administered the new aniti-seizure medication and Stella was cuddled in Juju's lap, looking relaxed and happy with Gracie holding her hand while they watched Dora together.    

In here…

Stella did not react to the anti-seizure medication in the way we expected.  Ativan usually would knock you off your feet.  For Stella, it had the opposite effect.  She received the medication at 8:00pm and was wired, her eyes wide as saucers.  She giggled, told knock knock jokes in her halting voice, danced and drooled.  At three o'clock in the morning, she was sitting with her Auntie Angie eating mashed potatoes and watching Golden Girls.  We brought her to bed and until after 4:00am she lay next to me, requesting to drink from her bottle and asking me to tell her the story of Cinderella, and then the story of Tikki Tikki Tembo.  I was both amused and exhausted.

Out there…

Stella ended up sleeping until noon the next day.  Since she was sleeping soundly, Heather and I took the boys to Church.  Again, when I stepped outside, I felt as though I was in disguise.  I'm sure most people at this Church assumed Sam is my first baby.  Some people even asked if Sam and Xavier are twins.  When I am away from Stella in these moments, I always feel guilty.  I want to tell people about Stella, but if I mention I have an older daughter who's nearly three, people inevitably share a cute story about a child they know of a similar age, then wink knowingly like I know just what they mean.  In these moments, it feels as though there is sawdust in my mouth.  If I say, "Well, my daughter is palliative for a cancerous brain tumour", I imagine the silence and discomfort that would follow.  So I say nothing.  I just smile back, all the while feeling uncomfortable and like I'm being dishonest somehow.

In here…

At home now, Stella vacillates between being wide awake and smiling, to falling into a deep sleep that she cannot be roused from.  The TV drones on continuously; sometimes it's Stella's choice (Dora or Golden Girls), other times it's just muted moving pictures in the background.  Our family and friends pop in and out to check on us and help out.  The mailman comes at 10:00am and every Wednesday the Garbage/Recycling truck comes by around noon.  If Stella is awake, this is a huge highlight for her.  

Out there…

There is snow on the ground. I can hear it crunching underneath peoples shoes as they walk by out house.  The bus stops at our corner every 20 minutes and I know there are people there rushing off to work, reading the paper and tweeting on their cell phones.  The days roll by, weekends come and go, the clock rules the world. 

In here…

There is love and warmth and laughter intertwined with fear and dread and tears.  Time is measured in smiles, not seconds.  

Out there…

Are my friends, my dreams for the future and the promise of "someday"

In here…

There is my heart, soul and life.

And Stella just said clearly and loudly, unprompted, "My mommies love me".