13 months

Niko as Brigitte Bardot

Being a Realist

I’m still so shaken up about Gabby’s passing.  It was with foolish optimism that I assumed I had years to lazily find the right time to visit her.  I thought that I would fit it in the next time I’m somewhere around British Columbia. This optimism is no longer with me.

I’m not a pessimist, but I’m simply becoming more of a realist.  Isn’t being a realist a part of growing up?  I used to be one of those annoying 20-somethings with a bright smile on my face.  I used to preach about the fact that PMS was invented by lazy cranky women.  I thought that sleep was overrated and that I can sleep when I’m dead.  I also used to preach about how simple it was to shape your own destiny.  I felt that the world conspired to make my dreams come true.  I must have read that bullshit somewhere.  But I drank the Kool-Aid.  I remember bouncing out of bed in the mornings like a puppy dog, panting, salivating, excited to start my day, because I loved every part of my day.  Cringe… I think I remember saying things like, “Life can’t get any better than this.  My cup is already overflowing.”  It’s easy to be this sunny when you’re young and shit hasn’t happened yet.   

After we received Niko’s diagnosis, I gave myself a hard time for not being more chipper.  I felt guilty for not being hopeful and thankful.  But that’s just not me anymore.  And I’m ok with that.  I’m not the innocent, energetic, slightly delusional young woman anymore.  I don’t look at the world from the view of half empty, or half full.  I simply see the glass as it as.  I see the surface of the fluid at that precise level of the glass.  I’m more concern about the type of fluid and what I should do with it.  If it’s water, I’ll drink it.  If it’s Grand Cru Burgundy, I’ll give it to my husband.  If it’s Pellegrino, I’ll zone out for a while staring at the rising and bursting of the bubbles and then I’ll drink it.           

So with Niko, I’m taking things day by day.  I’m ok with a cup that isn’t overflowing.  I’m not looking at things as half full or half empty.  I’m looking at the water’s surface, trying to enjoy just floating on that surface, while at the same time, trying not to drown.     

While in Kauai last week, I met this Monk Seal.  He was exhausted from being out in the ocean.  I watched him bop along the surface of the water until it guided him to a peaceful rest on the beach.  

RIP Lovely Gabrielle

Today I read that Gabby passed away.  It was just too much bear.

I‘ve come to accept that I-Cell kids won’t grow bigger than 15lb to 20lb.  They get sick often.  They may never talk or walk.  They might not even learn to sit on their own.  I’ve even accepted, in an abstract way, that their lives will end way too soon.

But that abstraction allowed room for denial.  And denial is a powerful protective tool. 

Gabby has always had a special place in my heart.  She didn’t even live in the same country and yet I felt profoundly close to her.  I beamed with pride (the way a mother would) when I watched a video of her rolling over or playing with toys.  Each stunning photograph of Gabby filled me with deep satisfaction, as if I could somehow claim credit for some of that beauty.  And even though there was the distance of miles between us, I felt certain that I would meet her one day.  It just seemed natural.  If the muscles of my arms could talk, they would speak of their eagerness and readiness to hold Gabrielle.  It just seemed natural.

I just cannot accept her death.  Not today.  Not before I’ve had the chance to hold her.  She really does seem like family to me. 

When I read about her death today I just walked out of the cafe I was in, without a word to the people I was with and wept outside on the street. 

Life is so unfair.  Gabby caught a cold that was going around her house and breathed her last breath yesterday.

Rest in peace Gabrielle.  I really have fallen in love with you. 

Gabrielle, October 13th, 2010 - June 7th, 2013

Still Sick

Niko has been sick for over three months.  This ongoing cold has lingered for so long that I'm not sure if her I-Cell is preventing recovery from the original cold or if she's been the victim of an onslaught of new viruses.  I think it might be the latter.  She has had recurring fevers, persistent coughing, minor eye infection, ear infection, and interrupted sleep from labored breathing.  Within the last 30 days, she's been on antibiotics twice.

And through all this she's still smiling at everyone around her.  I think that she might be pulling out of this now (knock on wood).  I can't wait to hear her breathing clearly and free from obstruction.