Monday, November 19, 2012

The Gift of Time

We were so honored to be asked to share our amazing journey of Grace as family speakers of Canuck Place at this year's Gift of Time Gala.  What an amazing night.  We were blessed beyond measure to have been chosen to share the life of Grace and return thanks to Canuck Place as an organization for the enormous amount of support they were not only to Grace but to us as a family.  

Many of you have asked about the night and our speech.    We are very pleased to say that over $700,000 was raised that night for Canuck Place!!!!  We were overwhelmed by the generosity in the room!  Many supporters told us they gave because of a direct result of sharing Grace's story!  Oh how that made our hearts sing!  

Here is just a snippet/portion of our speech from that night...

Nelia:  William Arthur Ward stated that feeling gratitude and not expressing it is like wrapping a present and not giving it.  Tonight I am so excited to finally GIVE the long awaited gift of THANKS and gratitude to Canuck Place as an organization with all of its doctors, nurses, staff and generous donors such as yourselves here tonight.  We wear the name of a Canuck Place Family with pride and to be asked to share tonight is an honour we do not take lightly.

....Even before the kindness of the staff, and the confidence of the doctors and nurses, my soul felt at peace.  It felt so strange after being in a state of fight or flight for so long, to feel peace.  We met with staff and walked through the house and learned that CP was far more than we had ever imagined it to be.  We were told that the staff at CP were not there to stop the roller coaster of Grace’s illness, rather they were there to provide comfort and support for as long as the ride would last.  No one was trying to ‘fix’ her and no one was frustrated that she didn’t fit a typical mold.  The nurses were so in love with our sweet babe and literally fought over who would be the first to cuddle her.  Do you know what that did to this tired mother’s heart?  I was so tired of the fight…the fight of advocating for my helpless babe…the fight of trying to get people to listen and to care…to notice her.  And here – at CP the staff saw her value and it showed.  She was not just a patient…they knew her by name and loved her and for us that made all the difference.
And tonight we want to help you see all that Canuck Place does through a two different lenses…through the perspective of a mother and a father.

Nelia: To see CP through the lens of a mother’s heart is where I would like to take you tonight.  To fit into a few minutes all the stories and memories of our amazing journey of Grace at CP is impossible.  So I chose the nearest and most dearest stories of thankfulness that stood out most during our time at CP with our sweet baby Grace.
Being away from my family was taxing…my two older children were still little themselves at the tender ages of 4 and 2 and a half.  The separation of our family and missing out on life together was excruciating for me as a mom.  I missed out on a lot of life with my family and they missed a lot of time with Grace.  I felt caught between two opposing worlds and pulled equally from either side.  One of the greatest gifts CP ever gave to me as a mother was the opportunity for my family to walk through the darkest valley of our life together…as one.   CP felt like a home away from home….being together under one roof to walk this painful journey together was the greatest gift to my weary soul. 
There was such a joy in knowing that my older children and my husband could pop in and see Gracie, hug her and hold her, sing to her, just be with her.  Olivia and Isaiah loved being at CP…they flourished while there as they frolicked from the volcano room where they could jump and play, to the sand room (as they affectionately called it) where they received play therapy, to the school/dress up art room where they could so freely express themselves, to the gorgeous grounds, garden and play house – my kids were happy….all 3 of them – and finally so was I.

To be able to feel joy and peace during such a tumultuous time seems so backwards.  Yet, this is the power of CP.  To take a mother who was so broken-hearted and weary from the journey of gradual loss and allow her the gift of finding joy in the most painful moment of her life is nothing short of a miracle.

CP gifted us with time.  I love that the gala is phrased ‘The Gift of Time’ because to a parent with a child with a life threatening illness there is NOTHING more valuable than time.  We nearly lost Grace in Sept 2008 –when we were first introduced to CP.  I remember crying out to God in that hospital hallway pleading for more time.  More time to love her than trying to fix her, more time to hold her rather than researching a cure, more time to be together as a family rather than an ocean apart   TIME…indeed the most precious gift.  I am forever grateful for the extra five months that we had with our sweet Grace.  Time with our gentle warrior, as we lovingly called her, was like water to my thirsty soul.   When I would get caught up in the moment and begin worrying about the future and how long we would have her, I would hear a gentle whisper…”to enjoy each moment…embrace her beautiful life, make a conscience effort to be present in each moment with Grace – to cherish this time!” Those precious moments and memories with our Gracie Grace were like a vapour in the wind…yet somehow miraculously CP helped to suspend those moments allowing us to share a lifetime of love with our sweet baby in a short amount of time. 

ANDREW:  What does Canuck Place mean to me as a father? When I came to Canuck Place I was beaten down and felt like a failure.  Fathers are supposed to provide for and protect their children and I could do neither for Grace.  Everything was moving so fast that I couldn't keep up.  Our stay at Canuck Place allowed us to slow down enough to get grounded. The care that they provided--physical, emotional, and spiritual--allowed this father to rise up and be a man again.

I watched and talked with other fathers who were walking with the same pain I was.  Somehow this made me feel normal.    I had not failed my family and Gracie; rather I was doing everything I could to make sure that Gracie was in the best possible place for her.  I was providing and protecting.  Canuck Place restored my dignity as a father.  At Canuck Place on the front desk when you walk in there will appear a green light every once in a while.  When I first saw it I asked one of the nurses what it meant and she told me that it was to let everyone in the house know that someone was coming to the end of their life's journey.  When our family was at Canuck Place for the last time with Gracie and she was very obviously coming close to her end I remember asking the doctors and nurses if we should turn on the green light.  In their wisdom they turned around and told us that it was our choice; did we think Gracie was coming to the end?  This was a small but amazing gift that they gave us.  They gave us a measure of control in an uncontrollable situation and for this father it gave me a sense of honour that I could play this part in my daughter's journey.  I know that the doctors knew more than me and probably knew that these were Gracie's last hours way before I did, but they let us come to the realization on our own.  They could have easily dictated what we were to do (turn on the green light, call your family, call the funeral home).  Instead they were so gracious and caring.  Canuck Place gave me back my dignity and honour as a father in those moments.

The peace that I had at Canuck Place was not just because of their care while Gracie was alive but also their care for us after she died.  They have helped us in so many ways and one in particular stands out in my mind.  On the morning that Gracie died we were given some time to just be with her as a family.  I remember that Nelia bathed her and dressed her up so pretty.  Her skin was a beautiful pure white and her face was so peaceful, all her pain was gone. It was in this time with Gracie that I was able to dance my last dance with her.  I played the song "I will dance with Cinderella" by the artist Steven Curtis Chapman and I dance with my little girl.  I danced that dance for allthe dances I would miss.  Dancing with her in the living room as she practiced for her first dance, for her prom, and for her wedding.  I was able to freely weep and embrace my little girl.  It gave me a memory that I will hold dear to in my heart for the rest of my life.  It allowed me to release my daughter to go to her Heavenly Father and this gave me peace.  The staff at Canuck Place didn't rush us or dictate our last moments with Grace and this brought a measure of healing to my broken heart.  It has made it possible to continue healing 3 1/2 years later.

Canuck Place allowed me to be a father and husband; to play with my kids, to date my beautiful wife Nelia, and to care for Gracie.  You have all allowed me to be a father to my children and a husband to my wife so from the depths of my heart I wish to say thank you.  Thank you, because in the chaos of our lives, Canuck Place was a haven of comfort, peace and dignity that allowed this man to be a father once again.

CONCLUSION - Andrew:  Our family will always remember CP as a place where Gracie lived, not solely the place where she died.  In fact, after returning from our first ever trip to DisneyWorld, we asked Olivia and Isaiah where they wanted to go for our next family vacation and without skipping a beat they both said – Canuck Place!  Isn’t that amazing?  As a family one of our favorite places in the whole world to be is at CP – for it reminds us of a sweeter time when our family was whole, as one, and we were happy for we were together. 
And so tonight we stand here before you so forever grateful.  You – each of you here tonight has made a difference in our life – and in the life of our sweet baby GRACE.  We are just one family of many that wear the name of a CP family proudly.  To share our amazing journey of Grace with you here tonight has made our hearts sing.  

We agree wholeheartedly with the purpose stated on CP’ website that Canuck Place encourages each child to ‘embrace life’ and believes in enhancing the quality of whatever time a child may have left by empowering them to live fully and joyfully

And that is what it all comes down to tonight isn’t it?  Celebrating the beautiful life of these children…to sing their song even after they are gone!  And so we leave you tonight with a quote from the beloved Children’s Author Dr. Seuss - ”Unless someone like you cares a whole awful lot, nothing is going to get better.  It’s not”