"Remembering You Are Going to Die Is the Most Important ... " ~ Steve Jobs

I've been waiting for the right time to post this video for months now, and I never thought Steve Jobs' death would be what prompted me to do so.

“Remembering that I'll be dead soon is the most important tool I've ever encountered to help me make the big choices in life. Almost everything — all external expectations, all pride, all fear of embarrassment or failure — these things just fall away in the face of death, leaving only what is truly important. Remembering that you are going to die is the best way I know to avoid the trap of thinking you have something to lose. You are already naked. There is no reason not to follow your heart.”

 – Steve Jobs, at a Stanford University commencement ceremony in 2005.

 

Tiny Light Foundation

My mother in-law saw an ad in the paper months ago about the Tiny Light Foundation; a non profit organization that provides families with professional photography for children and families faced with a life altering illness.  As I drink up every smile, snuggle, and moment with Gabrielle I was so excited to have some photographs taken to remember the wonderful summer we had with her.

Matt Brennan was our photographer who came all the way from Pitt Meadows to spend the evening with us at east beach where we spent many summer nights as a family.  Yes, it was the end of the evening and our boys were rather rambunctious, but Matt managed to capture a few shots that I will always hold close to my heart.  Thank you to the Tiny Light foundation and to Matt from the bottom of my heart. 

Here are a few of my favourites:

Guest Blog Post From Your Auntie Julie

This past weekend, I participated in the Canuck Place Adventure Challenge with my team, Team Gabrielle.

Our team was awesome. We raised over $10,000, we trained together, and we worked hard! We also had a good reason: one year ago my niece, Gabrielle, was born with I-Cell disease, a rare genetic disorder with no hope for a cure and a very short lifespan.

I never dreamed in a million years that a charity like Canuck Place would be so near and dear to my heart; but it is, for many, many reasons. Shortly after Gabrielle was born, she received a stem-cell transplant. She was hospitalized for 5 months. Day in, day out, my sister and her husband would take turns spending the night at the hospital with Gabrielle, or spending the night at home with their two boys. It took a huge toll on their family, and finally, in July, they were sent to Canuck Place for respite care.
At Canuck Place, Gabrielle was able to receive the 24-hour nursing care she needed, and the doctors, who had already seen her at Children's Hospital, knew everything about her. She had her own beautiful room with windows that you could open and breathe in the fresh air. She had a huge pram that allowed her to go outside and feel the sun on her face. And she was able to go outside her room and anywhere in the house, whereas in the hospital she was stuck in the tiny little transplant room. You could see her spirits rise!

My sister and the rest of her family all stayed there too. They had excellent home-cooked meals; there were volunteers to help with the busy boys with tons of fun and creative activities; they were able to enjoy quiet, sleep-filled nights; and there were amazing staff and other families who could relate to what they were going through too.

A week into their stay, my family went to visit them. We stayed for dinner and got to experience some of the excitement that they talked about. It was incredible, it was everything my sister said and more. I saw first-hand how amazing Gabrielle looked. I saw the colour back in my sister's face. I saw my nephews laughing, and I saw how rested my brother-in-law looked. It was awesome, this is where my gratitude for Canuck Place began!

So, on Sunday, when I crossed the finish line at the Adventure Challenge, holding hands with my sister Amy, and my wonderful friends Nadia and Adrienne, I was completely overwhelmed. It was perfect. Gabrielle was there in her daddy's arms, my husband and my kids were there cheering me on, my nephews were there excited for us to finish; our IF trainer, Isabelle, who spent hours and hours training us was there; and I knew all the people in Gabrielle’s support system who had made donations and sent us wonderful words of encouragement were there in spirit too. It was awesome!

Miracles, Life

Growing up my Dad would always say that the greatest miracle of all is birth – the beginning of life.  I remember him saying that one day I would understand what that really meant.

We had James, and I thought I understood it.

We had Michael, and had a scare during delivery, and I thought I really understood it.

We had Gabrielle, and I think I really understand.

Like the layers of an onion, so the Eastern metaphor goes, you can peel and peel and peel and get closer and closer to the truth.

And right when you think you have the secret in your hand, you realize that the core can be peeled too so that there's nothing left in your hand.

Except the whole universe.

And that's kind of what miracles and life are like.

cold stress

Well my stress level completely sky-rocketed yesterday morning when I woke up to pouring rain, dark clouds, and a little boy with green snot all over his nose, coughing and sneezing away.

I was instantly carried back to the 'meeting' I had with the ICU docs, and Gabrielle's team of doctors (BMT, respirology, Canuck Place, etc.) this June declaring her palliative and predicting that she may not make it through the winter with all the colds and flus that may hit her.


I dreamed of our warm summer weather...

I dreamed of moving my family to Maui or California where it's sunny and warm...


I thought back to last winter and how difficult it was for me.  I remembered staying up until the wee hours of the morning wiping and disinfecting every handle, door knob, toy, and washing sheets and pillow cases.  It still didn't work, and Gabrielle caught some colds that lasted quite a while with the last one putting her in the hospital for 10 days last February.

Monday our nurse walked out of the room with our sweet little girl who had NO TUBES on her little face.  We all danced around and cheered for her!  September 26th was the day that Gabrielle was to discontinue oxygen - a miracle as she was declared oxygen dependent.  She lasted about an hour and then wasn't able to keep her sats up past 90% so we put the oxygen back on.

Today she's been feeling off and we've had to increase her oxygen, but so far I've managed to keep her healthy.  Yes, it's difficult to keep her away from the boys, but even little Micky 'understands' that when he's not feeling well he's not allowed to kiss her, touch her or hug her.

I have to admit I was feeling very sorry for myself when I had to get Gabrielle away from the sick boys so I took her over to my parents for the late afternoon and where we stayed until Regan put the boys to bed.  I wanted to provide her with refuge from our cold-infested house.  But today I gave my head a good shake thinking of other families and people in far more dire and stressful circumstance than ours.  I started to feel grateful for everything I've been given in my life.  I thank the universe every day for the wonderful summer we've had with Gabrielle at home and hopefully many more months ahead.

I kissed Gabrielle and smelled her little head and neck.  I played with her and took in every little detail of her face and body.  I smiled and laughed when she babbled, and I held her little body so close to mine trying to capture in my mind every little thing about her...