Thursday, March 29, 2012

Big Brother James

James has all the patience in the world for his little sister Gabrielle.  He is an amazing big brother.

I think of the journey we've been on in the past year in a half and I marvel at how much we've learned through Gabrielle.  But, I often forget that James and Michael have also been on their own journey.

James is a very different boy then he was 6 months ago.  He talks about things that some 60 year olds probably don't even ponder.  He is lucky.

On the same hand, it breaks my heart to hear him ask these questions about Gabrielle and talk about his own mortality.  I don't know many 5 year old that think about these things.

I want to protect him from sadness and pain but I know how lucky he is to have a sister like Gabrielle.  He is also gaining wisdom and strength at such a young age, and is learning so much.

I want to teach him through this that even though there is lots of sadness, there is so much joy, happiness and love and it surrounds you wherever you are.  You don't buy it.  You don't travel far distances to find it.  It's in you and it's all around you.

Big brother James, you are amazing.  I love you my little man.

Friday, March 23, 2012

Laughter #9 ~ Good Comedy Shows

It's been almost 5 months since the last "Laughter" post, and that has almost everything to do with exhaustion and more exhaustion. But at the urging of my sister Danielle, who is also a teacher, we started watching Mr. D, maybe the funniest TV Show I've watched since BBC's The Office and HBO's Arrested Development. It's soooo funny, sometimes envelope-pushing awkward, but – maybe because it's created and driven by a teacher-turned-comedian – so, so close to the painful realities that create teaching/school stereotypes.  Here's a clip below.

Sunday, March 18, 2012

Palm of Your Hand

When the house was standing
You'd never have believed it
When the house was standing
You'd never have believed
The bricks and mortar
Have all given way
At first they resisted but then they began to sway
How can you say forever is at your command
How can you say the future's in the palm
In the palm of your hand
When the house was standing
You'd never have believed it
When the house was standing
You'd never have believed
That gaping hole was once a foundation
Where you stand now were tools in the basement
How can you say forever is at your command
How can you say the future
Is in the palm
The palm of your hand

- Cake 

Saturday, March 17, 2012

The Future

I used to relish in thinking about the future.  I am a huge planner, I love goal setting, I love new experiences, and challenges.  I love to learn.

Now, the future scares me.

I worry about my boys losing their sister.  In watching the latest video on our blog that Regan posted the speaker mentioned how kids are programmed for survival and are incredibly resilient.  I believe that.  I am still scared.

I don't know how I will deal without Gabrielle physically in my life.  The thought of not being able to hold her, hear her, smell her and have her scares me to death.

The future used to excite me.

Now the future scares me.  A future without Gabrielle seems impossible.

I live for the day.  I live for a walk outside in the fresh air with my 3 babies.  Gabrielle close to my body in her snuggly.  I live for the moments I get to lie beside her and watch her play with her toys.  I live for the moments when I get to pick her out of her crib in the morning and she flashes me the funniest smile that makes me laugh out loud every time.  I live for the shrieks and yelps when Gabrielle touches her brothers faces and babbles to them excitedly.

Gabrielle, you are so special.  You make my life magical and more meaningful then I ever could have imagined.  I love you my missy moo.

Friday, March 16, 2012

Moving Goal Posts

In conversing with a wise-old owl today,

And remarking how desperately I want to get on with all things normal and productive,

With decades of knowing experience, she commented,
"It's tough setting your sites on any goals when the posts are always moving."
Wisdom is great.

Tuesday, March 13, 2012

The Power of Vulnerability ~ Brene Brown

Uh ... yah. So I put off watching this video-talk for a looong time. Like it's been on my watch list for what seems like a year. But three days after the fundraiser in Grande Prairie, I watched this tonight in hopes of making sense of what I was feeling. It struck a gazillion chords, especially her points at the end.

p.s. A big thanks to everyone who bought me one of those tasty shots and/or frothy beers at the Lions Den .... definitely helped with my "numbing" that night (you'll get it if you watch the video).

Sunday, March 11, 2012

The Thank You Speech I Chose Not To Read At Gabrielle's Fundraiser

My sister Danielle with Krista and Eva (Eric's sister)
I asked my sister Danielle, “So, should I keep it short? Like prairie wedding with whiskey short?” And she said something like, “Well, it’s not like the people coming don’t care. As long as it’s real, I think they would love to hear what you have to say.”

So I’ll do my best to keep it short … and real.

This entire weekend has left Amy and I speechless … from the first time we learned about it.

I suppose no one wants to receive charity because … well … I think we’re all prideful, and none of
us want to be charity cases.  So here I am. Gabrielle’s Dad. In awe. Totally humbled.  

Eric's thank you pic on the
website to everyone who came
Let me start by saying that, Danielle and Eric, you two are truly exceptional. And I’d like to share something I wrote last spring on our blog for Gabrielle, when we were in our 3rd month at BC Children’s Hospital for her stem-cell transplant.
Exceptional ~ May 24, 2011
Thank you Daniel and Eric … so so much for organizing this. You two are exceptional to the very core of the word, and this fundraiser is going to help us enjoy our time with Gabrielle so, so much more.

I just want to share with you how this is going to help. 

For starters, we’ve really come to realize that life can be hard. In all sort of ways … life can be hard. 

For us, life raising a severely special needs child is hard. Raising a little girl who is terminally ill is really hard. 

Maybe some of you have been through similar experiences with a child of your own, or a brother or sister or parent or close friend going through something difficult, but life just isn't always easy. For many, many people, life is hard.

For us, there’s tons of extra attention that needs to be paid from sunrise to sunset: there’s the meds, careful bathing around a central line to prevent infection, making sure our boys don’t put jump or hurt Gabrielle because her bones are soft and they could seriously hurt her (or worse), and on and on. 

There’s the lack of sleep with medical contraptions going off through the night, and there’s the lack of sleep just because you worry. And there’s also sadness, which is tiring in its own right.

I’m sharing this because you are all helping us with this. It’s incredible really. It will help us to start putting the pieces back together, as much as we can. It will help us start living a more “normal” life with Gabrielle … and our two little boys. In so many ways.

You guys really don’t know how amazing this is for us, or maybe you do. We are so grateful. Seriously. And sincerely. Thank you.

. . .

Aside from everything I’ve already said, I think the most amazing thing about this weekend is what our little Gabrielle has taught us all about life.

I think a little bit of her innocence and love and vulnerability has touched our hearts in similar and different ways. 

I’ll share mine.

Something happens to you when you look at a little baby – a little child – and know they won’t live very long.  Something even greater happens when you’re that child’s parent. To put it simply, it forces you to confront reality.  

When we got the news about Gabrielle, that whole first day I asked myself over and over and over, “How are we going to raise a little girl who’s going to die?” 

Like how do you do that?

We found out you just do it.

You just do it because you have to. Because you want to. Because there’s this little angel – just like every baby is a little angel – who looks up at you with the most loving eyes.

This forces you to realize some amazing things about life.

Things like life is hard.

It’s not all easy.

Life's not perfect, despite how much we want things to be perfect.  

And how living through hardship and imperfections makes you stronger. Makes you more human.  More real.

Raising a child who you know is going to die makes you realize that what you thought was important actually isn’t. It makes you realize how most people’s world views are like houses of cards. And how most of us will go to great lengths to protect our houses of cards from getting blown down by the winds of reality.

Gabrielle blew down our house of cards. She stripped away so many of our false illusions and helped us realize what really matters. 

So what matters?  Well, I guess whatever we think matters, matters, to a certain extent. But I guess what am I saying is that – as morbid as it sounds – our darling Gabrielle has taught us that our time on earth isn’t permanent. There’s nothing permanent or perfect about it.  

We’re here right now, and we’ll be somewhere else tomorrow, and somewhere else a year from now … and definitely not around in 50 or 80 years.

Life is limited. Life is what you do in between the start and finish. Some of it will be good. Some bad. Some of it happy. Some of it sad. And that’s okay. 

All these things are part of being human. 

I guess Gabrielle has taught us that all we have – all that really matters – is how we spend our time. Our time with one another. 

Thank you so much for your generosity; thank you so much for coming tonight.

Thursday, March 8, 2012

The Most Astounding Fact

I was explaining to a friend last night in the car under the light of a full-moon that our two boys were gazing up at after I pointed out how amazing it looked,

"The reason why I've fallen in love with all things frontier-of-science-and-understanding is because I want to know what's gonna to happen Gabrielle."

"You mean, like her disease?" she asked.

"No, like when she dies. What happens? You know?"

"I think I do."

"Well, none of us really ever will, but it's so amazing trying to understand."

At exactly the same time, in my inbox, an old high school friend who I haven't talked with in years and years randomly emailed me the video below.

Why don't these things surprise me anymore?

Sunday, March 4, 2012

Thoughts at 16 Months

It's hard to believe that today, Gabrielle is the same age that Michael was (16 months) when she was born. Such different paths. Such different milestones.

16 month old Michael playing in the park near BC Children's
when Gabrielle was born and in the NICU.

Gabrielle born October 13, 2010.

Michael showing his new sister how he's driving his car
upon her arrival home from the hospital.

Michael today. Handsome devil.

Gabrielle Mae Ross at16 months old, February 13,  2012.

Saturday, March 3, 2012

Everything Is Motion

Everything is motion.

There's no such thing as time – it's a construct we've created to help us survive,

And understand the moment-by-moment realities of the earth spinning round and round the sun.

Cancer is, quite literally, cellular duplication in motion.

I-Cell disease is enzymatic misfiring in motion.

Love and hate are feelings and being in motion.

What you're thinking – as you read this – is thought in motion.

The world is in motion.

The universe is matter in motion.

Atoms and galaxies in motion.

That's it.  How could it be anything different?

There is no "time" as we know it.

Just matter in motion. In space-time.

Minds in motion.

And while there's something far greater than what we're doing day-in / day-out ... we'll never be able to comprehend it's trueness in this life,

Right now, in this dimension, all we got for sure is motion.

It's the old faithful that won't go away.

It's crazy if you think about it.