Steps Away and Further Along

Man, three posts in a row. I thought I was done.

We knew for 30 months the worst day ever would come, and it came,
And every day is a step farther away from our last day with Gabrielle,
A step farther away from dancing with her in our living room to this song, and
A step further along this next journey we're still trying to make sense of.

Found Photos of Gabrielle

There's one computer in our house that holds all our pictures. My laptop, which I never use for pictures, was sometimes used the past couple of years for silly photos. I dug up a few photos of Gabrielle and thought I would share them for friends, for family, for those we don't really know but whose lives have been affected by our daughter, and, most of all, for her Mom, Amy.

Bringing home Gabrielle the first time from her stem-cell transplant.
Unfortunately it was short-lived and she returned to the ICU shortly after.
May, 2011.

Me in the ICU with Gabrielle watching the Stanley Cup hockey finals
in June 2011. 

Family floor time with Gabby was our most frequent and favourite activity.
She was most comfortable and happiest lying beside everyone
she loved best.  April 2013. 

I taught James how to use Photo Booth and he loved taking pictures. May 2013. 

Gabrielle loved listening to the "Beep, beep, beep" and then watching the flash go off.
May 2013.

This is one of my favourite photos of us: the first one you can tell she's listening
intently to the "beep, beep, beep"; the second one she's watching the photo flash;
and on the third and fourth one she's looking at me to try and tell me how neat
and exciting she thinks the noises and flashes are. She was so social.
The most social of all our kids, and that's saying a lot!  March 2013.

Michael 4, Jonny 1

One year ago my love and attachment for my little girl grew to a whole new level.

She was so sick that we had to take her to the hospital and I had to spend -- except for a couple day breaks where I got to home to rest and recover -- the entire time with her because Amy just couldn't: she was full term and scheduled for a c-section with Jonathan that very week. The wonderful twist of fate was that Amy was at BC Women's Hospital and Gabby was at BC Children's Hospital, which are both in the same super-big medical complex, and we were, in a way, able to bring Jonathan into the world under the same roof. Every morning she woke up that week she saw me in the room, and every night that week I cuddled and sang her to sleep.

And from that week on, Gabby was a Daddy's girl. She so had me wrapped around her little finger. From that week on she cried whenever she saw me – like screamed and cried – until I came over and picked her up and gave her cuddles and kisses. It was so consistent that I couldn't let her see me in the room when she was with the nurses, and there were a few times Gabby's nurses let out a quiet sigh when I walked up into the room (no one likes hearing an angel cry).

Yesterday was Michael's birthday. He's four. Today is Jonathan's birthday. He's one. They are so healthy. They are so wonderful.

I look back at this video from a year ago and wish I could jump back in time. I wish I could spend that week again with my little girl. She was so sick. I want to take care of her more, but here I am, stuck in time.

Siblings

I find it so therapeutic to read through all our blog entries and this particular entry I wrote just after her second birthday. We miss her so much and I find reading and looking at pictures and videos helps me to feel closer to her.  Many of my blog entries such as this one were never published and we just kept them to ourselves.  We are all missing Gabrielle so much.  We feel empty as Gabrielle filled our house with so much love.  Her spirit was larger then life.  I wrote this just after her 2nd birthday and find it so fitting as we try and support one another through this journey of grief.  

This topic leaves me so heartbroken and so helpless and is on the forefront of my mind the last little while.

Gabrielle has 3 beautiful little siblings who she will, one day, leave behind.   I used to think questions about Santa Claus or sex were tricky but now having to field questions from my 5 year old about death, dying and I-cell disease are my new 'tricky'.  They, as well, are trying to make sense of this and are trying to put the pieces together and understand what is going on. Sadly, my 3 little boys will also have to figure out how to live day to day with the pain of losing their sister.

As a mother, I have no idea how to deal with this on a day to day basis.  It pains me so much to hear James talk about how when 'Gabrielle's older she'll be able to...'.  How the heck do you break it to a 5 year old that Gabrielle will not ever be 'older', she won't go to school, she won't go to ballet or gymnastics, instead she'll always be a baby.  Or do you?

This evokes a whole range of emotions on any given day.  Some days I feel so incredibly heartbroken that my kids have to go through this, and that I have to do my best as a parent to coach them and support them through loss and grief.  What makes me even sadder is seeing how much love their is between them and how worried they get for their sister.  They excitedly talk about when Gabrielle gets to go to Kindergarten, they openly express how cute she is, or how much they love her, they take on the role as a care taker, and they cheer on her accomplishments.  

How many 3 year olds give nebulizers and help the nurses to distract her so that she'll eat more?  How many 5 year olds are thinking of ways to cure I-cell disease and asking questions about why doctors can't help her or cure her?  How the heck do you break that news to them?  Or do you.  Yes, my boys have been forced to grow up much earlier then most kids.

And then there's another part of me that stomps my foot down, with hand on hip like a fierce dragon mother and allows only joy, happiness and love to enter the house.  If Gabrielle is going to live a short life, it's going to be the best damn one I can provide for her and their will be no sadness or tears.  We will celebrate life, we will embrace the challenges and live day to day the best we can.  This part of me doesn't always win over the other parts of me but I try my best to keep it at the forefront.

Our kids know that she has I-cell disease and that she will live a short life.  It's hard on them and it's not until now that I'm realizing this.  I guess I've been so wrapped up in my own grief, that I've forgotten about theirs.

Dear Gabrielle

Gabrielle,

I am so lost.  Our house feels different.  We are without a family member and I am trying my hardest to stay strong.

I wore blue and black today.  That's how I feel.  I am grieving and I think about you non stop.  I see you everywhere in the house.  I haven't been able to change anything and it's as if, time has stood still since you left us June 7th.  I haven't unpacked your suitcase yet from Canuck Place.  I haven't put away the nurses binders or your 'med' station.  I haven't wiped the white board with all the 'to do's' to tend to from the week you passed:  "send Nick your July nursing schedule, contact the At home program etc".  I thought you would be home.  I haven't put away your toys, or your high chair.  I haven't thrown out the little piece of paper towel in the cupboard that the nurses used to put your night time nebulizer on.  We asked the oxygen company to give us more time and to leave all your oxygen tanks here as they are.  I see your stroller that we used to push you around in for walks.  I see your little shoes and coats and dresses hanging in the closet.  I look through your clothes and cry.  You are everywhere and nowhere.

As James said yesterday in between tears and trembling lips, "Mom, I wish we could just see Gabby one more time, even if it's for a second".  And Michael who prays every night to you by saying "Please come back Gabby, I love you".   We light your candles every morning and blow them out when we go to bed.  I still kneel by your crib every night and talk to you.  I have your little glasses, your soother, your outfit that you wore when you passed away, your splints, a beautiful little tuft of your hair that we snipped before we took you to cremation, your heart necklace that we each wore when you passed.  I even turn on your big tank of oxygen by your bed to hear the hissing sound of oxygen flowing.  I turn on your bedside light and wind up your little music stuffy like I used to every night before bed.  I still say good night to you through tears and send a kiss into your crib and into the heavens.

Thank you for visiting me in my dream last night.  It was the first time I've dreamed of you since you left.  You were playing on the floor with your dad.  It was so magical to have you back.  The house was alive again and to hear you talk and see you smile was the best thing a mother could ask for.  To be in the presence of their child again.  I pray that I can continue to feel you Gabrielle.  I miss you terribly. Losing you is the absolute worse and being a mother to you in Heaven is harder then anything I've ever done.

I will love you forever and ever, and ever and ever, and ever and ever and ever.  You will always be my beautiful baby girl.

Mom

An Irish Poem

An Beannacht

On the day when

the weight deadens

on your shoulders 

and you stumble,

may the clay dance

to balance you.

And when your eyes

freeze behind

the grey window

and the ghost of loss

gets in to you,

may a flock of colours,

indigo, red, green,

and azure blue

come to awaken in you

a meadow of delight.

When the canvas frays

in the currach of thought 

and a stain of ocean

blackens beneath you,

may there come across the waters

a path of yellow moonlight

to bring you safely home.

May the nourishment of the earth be yours,

may the clarity of light be yours,

may the fluency of the ocean be yours, 

may the protection of the ancestors be yours.

And so may a slow 

wind work these words

of love around you,

an invisible cloak

to mind your life.

~John O'Donohue

Missing you Gabby.

I know that life continues.
But for me, it is standing still.  Afraid to get too far from you.
My memories of you will be in my heart forever sweet Angel.
I miss you Gabrielle.

My 4 beautiful babies.  Almost impossible to get a picture without someone crying!

You are, your Father's Daughter.  Rock on Gabby!

You and James goofing around with my I-phone.

Off to the city for some glasses!

Lightsaber fights were the best.