Journeys and Angels

We were walking on the beach a few days back – the whole family, which is sooo cool – and Amy had Gabrielle in her snuggly up on her chest, with her oxygen pack on her back. It was a busy night and we passed lots and lots of people, and Amy noticed several people wince as they passed Gabrielle with all her tubes taped to her cyclosporine face.

But Amy said the neatest thing, "You know, I love showing her off. I love seeing people twist their faces when they look at her. It's like they don't get it, like they're walking asleep." And it's so true.

I remember when we first learned of Gabrielle's diagnosis, it took us a while before we could 'bring' ourselves to look at the pictures of I-Cell children. I know, it's horrible to admit, but it's the truth, and other I-Cell parents assured us that it took them some time too. The fact of the matter is, though, that we had to "bring" our "selves" to look at the pictures of the I-Cell children, which in and of itself, implies a journey. Where did we go? What did we see? What did we learn?

It's amazing, really, when I think about it, that it took us so long to adjust to the realities Gabrielle forced us to confront. And make no mistake, we're still adjusting. But, when Amy said to me the other day, "How can it be that amidst all this, I'm the happiest I've been in my life?" I couldn't help but think it's because Gabrielle's helped us realize what matters most in life. It's been a long, long journey that she's "brought" us on, no doubt! But on this journey our "selves" have awoken to so many incredible wonders and beatitudes, that sometimes we take them for granted.

And that evening on the beach, with Gabrielle looking out at the world, strapped into Amy's chest for everyone to see walking, with her arms wide out, makes me think of the word 'angel,' and how it comes from the Greek word "angelos," which means "messenger, one that announces," and how all the winces and face-twists we see are actually reminders of everything we've learned and continue to learn from life with Gabrielle, and how lucky we are to be hosts to this little girl with the most amazing message anyone could possibly receive.

Let Patients Help

While the illness this talk centers around isn't I-Cell (it's cancer), the message of "Let Patients Help" is universal. I would especially like to thank Pauline Drover (founder) and all the members of the I-Cell Support Group for their incredible support and helpful information over the past 9 months. In many instances, the information from the I-Cell families was exactly what we needed for Gabrielle (just like the speaker in this video talk discusses), but your encouraging words and the stories you've shared inspire us to approach life with Gabrielle in the right way. Thank you. Enjoy the video.

Life Like a Holiday

After well over a month in the hospital and Canuck Place, Gabrielle is coming home today. I'll share with you that she's been given "palliative" status, which means the medical focus will now be on symptom management, instead of doing everything possible to 'cure' her. The prognosis for the upcoming flu season is not good (it's not good at all, actually), and that's what I'm writing about today:

Who cares!

Like seriously! Who plans a holiday and immediately starts dreading about its end? Who goes to a party, or BBQ, or movie and thinks about how let down they'll be when it's over? Who goes on a hike and thinks about how sad they'll be when they take their last few steps on the trail?

No one thinks thoughts like these! (or at least I hope they don't)

And why should our summer and fall and time with Gabrielle be any different?

Why should your summer be any different?

Why should anyone's anything be any different?

It shouldn't!

Holidays are maybe the only occasions when it's culturally appropriate to proudly announce, "Isn't this fun! Isn't this great!"

Heaven forbid you say such things at work,

Or at home as you empty the dishwasher,

Or to someone you care about over a regular meal in the middle of a regular conversation,

Or to a stranger in a really long post-office line, a stranger who looks to be in good health, with a scowl on her face, standing in a well-lit building with heating, about to hand something over to a person who works in a ridiculously complex system that will guarantee their something will arrive somewhere else in the world for a the price of a few dollars! (like how cool is that) ... how dare we announce, "Isn't this great!"

If we tried to live life a little more like a holiday, I think we would all do a little more living.

Our birthday boy!!

Our not-so-little Micky turned 2 yesterday!  Happy Birthday to the most kissable and squeezable little guy.  Thank you for always making us laugh and for your endless amount of energy. I am such a lucky momma to have such a loveable little guy like you.  Sometimes it's easy to forget that you're only 15 months older than your sister Gabrielle because you're the sweetest big brother.  If you get the chance to read this when you're older, I want you to know that even though the past 3 1/2 months were the most stressful, emotional and exhausting time for us, there wasn't a day that went by where I didn't think of you and miss you. On the days when I would come home from the hospital, you filled me with so much love and energy.  Your kisses and hugs, your laugh and spunk, gave me exactly what I needed to keep going.  You have no idea how much I love you and how much I've missed you the last 3 1/2 months.

At 2 years old you love your 'buggy' and 'bubba', your sister "Gabyelle", and your brother Jimmy. You love to play sports and your favourite right now is basketball. You can even dribble the basketball and you love to drop kick balloons, soccer balls and anything that is 'kickable'.

I love watching you grow and I am so proud of the little 2 year old that you are. We love you Micky. Happy Birthday!

James got to help Roxy bake and decorate Michael's bday
cakes!

Blowing out your birthday candles

Gabrielle is the luckiest sister in the world to have a brother like you

Some love from Roxy - one of the amazing Canuck Place chefs!

Canuck Place birthday party

Too busy eating cake

I Don't Know What ...

I don't know what topic to write about, but here are a few random thoughts:

1. You can hear of things, then you can know things, then you can understand things, and then you can feel things. It takes prolonged experience to work through all of them.

2. "Life is what happens to you while you're busy making other plans." (John Lennon)

3. Doing good things makes you feel good, and if you do them often enough, you start becoming a good person.

4. You can never assume to know what someone else is going through (or gone through) without taking the time to listen ... SHHH! ... and hear it from them themselves.

5. Being a good Dad is important, maybe more important than being a provider, and while our society doesn't reward/recognize men (with money or status) for trying to be good Dads, I can't think of anything better than the emotional rewards you receive.

6. Babies are Buddhas.

7. Sadness isn't a bad thing, and maybe people slip into depression because everyone they know thinks it is a bad thing, and they don't know anyone who will just listen to them talk about it without trying to get them back to happy.

8. Emotional distress and heartache are exhausting. Be patient to those going through difficult emotional times (except high school students after break-ups ... what a blessing!), and remember that their energy levels at high noon are like yours before bedtime ... that is, assuming you're not experiencing emotional distress or heartache yourself.

9. What you think about right before sleep is what you'll be tasking your brain to work on all night long, and if you want to get even more bitter, envious or upset, think those kinds of thoughts right before bed. It does, fortunately, work the other way.

10. I'm so glad my buddy Sam made me read Kurt Vonnegut's Slaughterhouse-Five, if only for this one passage:

"The most important thing I learned on Tralfamadore was that when a person dies he only appears to die. He is still very much alive in the past, so it is very silly for people to cry at his funeral. All moments, past, present and future, always have existed, always will exist. The Tralfamadorians can look at all the different moments just that way we can look at a stretch of the Rocky Mountains, for instance. They can see how permanent all the moments are, and they can look at any moment that interests them. It is just an illusion we have here on Earth that one moment follows another one, like beads on a string, and that once a moment is gone it is gone forever.  

When a Tralfamadorian sees a corpse, all he thinks is that the dead person is in bad condition in the particular moment, but that the same person is just fine in plenty of other moments. Now, when I myself hear that somebody is dead, I simply shrug and say what the Tralfamadorians say about dead people, which is 'So it goes.'"

Team Gabrielle : Canuck Place Adventure Challenge September 18th

September 18th my sister and two friends are going to partake in the Canuck Place Adventure Challenge out at Cultus Lake.  The four of us are going to run all three parts as a team starting and finishing the race together: a 40 km bike ride, 10 km run, and a 5 km kayak.  I feel very inspired and determined to raise money to help support the families and most importantly, the kids that are part of this program.

Let me talk about the children, including my daughter, that are part of this program as they have touched me in a way that no other child has before. These kids have been dealt an incredibly difficult set of cards, and they try to make the most of what they've been given in life.  I try to imagine myself in their shoes and when I do, I get so emotional, and determined to do what I can to help improve the quality of their difficult, and often short lives.  They have really impacted my life and made me realize that because I am healthy and able, there is absolutely no reason why I can't step outside of my comfort, and do what I can to make a positive difference in their lives.

Canuck Place is magical.  Everything they do here has the child in mind, and everything from the doctors, nurses, counsellors to the cooks, cleaners and development team are all financed by private donors and fundraisers.  The government only kicks in 20-30% of their budget and the heart of Canuck Place program comes from the 350 volunteers.  I wish you could see all the activities the volunteers and staff have done while we've been here: drama plays, tie-dye shirts, music, Seattle Sea Hawks visit, massages, baking dog treats for Poppy, games, memory making activities, movie nights, soccer games, beach days, books, and an endless amount of play in all the different rooms in the house.  My kids are never going to want to go home.

Please helps us fundraise for Canuck Place by sponsoring Team Gabrielle.  By doing so, know that you are helping to improve the lives of the coolest and most heroic children I've ever met.

www.adventurechallenge.ca

Thank you!!!

Team Gabrielle 
xxoo

Afternoon Bath at Canuck Place

Smiley People in Paris

I remember reading in a university psychology text (back in the late '90s) that the North American idealizations of happiness (i.e. happy all the time, everyone) were off the charts in relation to other culture's expectations of happiness. In fact, I remember the authors saying that if you were to walk around the streets of Paris with a big, wide grin on your face, they might think you were mentally challenged. The French are, after all, a very serious bunch.  :)

image from the Canuck Place website

For the first time in a long time, here at Canuck Place I feel like I'm the super haaaaapy(!) person who doesn't get it. The kids here are just so flippin' adorable, but the criteria they need to meet in order to be admitted is absolutely heart-breaking. The thing is, though, what we think is heartbreaking is our reality. It's not heartbreaking for them. It's reality! And their realities are so, so fundamentally different than your average person's.

Big smiles. Different realities. What's the connect?

Well, sometimes I think when you're exposed to the harsh realities of life – or when harsh realities are your life – your reality changes. You adapt. You grow. You get stronger. And your understanding of the full spectrum of life and of humanity increases.

The full spectrum. Not just the happy spectrum.

And I think that's what I'm observing here. There have been several kids I've tried striking up conversations with and they don't want to talk to me. I get that. I really do. Here's this 6'1" guy, walking around with two healthy feet and a healthy body, with a big toothy grin (to quote my father-in-law's wedding speech), trying to enthusiastically strike up a conversation. What do I know about what they know? Nothing! I wouldn't want to talk to me either. They're French and I'm this guy strolling the streets of Paris with this big grin on my face, only aware of one slice of the human spectrum.

And then there's all the healthy people I've observed since Gabrielle's birth, smiling away and fretting about how much work they have to do, or complaining about having to get up early for work, or how worried they are about their very healthy kid's dentist appointment, or all the Facebook updates about really normal and superficial things. Sometimes I cringe, and sometimes I chuckle: big smiles in the streets of Paris.

But when these kids laugh, they laugh. I mean, their smiles are so full of human spirit that it warms every heart in the room. It's not heartbreaking. It's genuine. It's refreshing. It comes from such a wise and mystical place – a place that no one else in the room can understand – that it can't be called anything other than special.

The big difference between these kids and Parisians is that these kids – each and every one of them – are heroes. Humans of all kinds celebrate and idolize heroes. Heroes are people we look up to, who can teach us how to be better and better. But I defy anyone to find a more heroic person than a child who knows they may not see it out of childhood and can still laugh and smile.

image from Canuck Place website

Canuck Place - "A Place Between Heaven and Earth"

To the staff of Canuck Place,

Tomorrow will mark one week since we arrived... and we are all starting to feel like ourselves again. After Gabrielle and I said a very tearful goodbye to the docs and nurses on 3B at BCCH, we were escorted by the ambulance personel downstairs and were ambulanced from the hospital to Canuck Place.  It was a warm sunny day when we arrived.  After being in the hospital for almost 4 months, I felt hollow, I was utterly exhausted, big bags under my eyes, pale, had no idea what the next week or month of our lives would look like, hadn't showered in a few days and was ready to collapse.

When I stepped outside of the ambulance with Gabrielle on the stretcher in her car seat, I felt like I had stepped into another world.  I squinted my eyes at the sunlight and looked around to beautiful flowers and green grass, birds chirping, and a big beautiful mansion out of a storybook or movie.

The paramedics escorted us to the back of the house and the elevator doors opened up as soon as we got there.  It's as if you were waiting for us to arrive.  We came up to the second floor and the first person I saw was one of our doctors who has been following Gabrielle since our NICU days, and I wanted to cry with relief.  A familiar face who has seen Gabrielle almost every day of her entire transplant, through the ICU and now through our transition to Canuck Place and then home.  We walked into Gabrielle's room and my jaw dropped at the sight of her beautiful big room, painted a light green with massive windows, a huge bathroom and a nice warm breeze.  It was heaven.  I was overwhelmed again with emotion as I was so relieved for my baby girl to finally be out of the hospital and into a wonderful, loving, cozy environment.

Every day has been like this since we arrived.  Every day I am filled with awe, relief and gratitude to all the people of this establishment.  You saved our family.  We no longer have bags under our eyes, we are staring to feel whole, we have energy again and colour in our faces.

Canuck Place is allowing Regan and I to take care of ourselves, which is, ironically helping us take care of everyone and everything else.

Thank you from the bottom of our hearts,
The Ross's

Canuck Place

On our second night at Canuck Place, I can't help but feel so relaxed and taken care of.  I never want to leave.

Some of our highlights so far:

Proper sleep.  We don't hear sat monitors beeping off, the loud hospital door opening and closing, and nebulizers at 2 am.

Gabrielle has a huge room the size of our living room at home full of windows and fresh air.  Airy, fresh and feels much better than the hospital.

Gabrielle has her own nurse all the time and the 1-1 nursing is meant for the whole family, meaning it gives Regan and I some time to talk, catch up and maybe even sleep!

I have this really cool old fashion pram that I can put Gabrielle in and take her all over the house.  Their rendition of 'isolation' is much more relaxed then at the hospital where we couldn't even leave our room.

Most importantly...I get to have my whole family under the same roof together...and it is awesome!

Learning To Be Grateful

The other day, in the germ-free hospital playroom (super cleaned for the toddlers/kids going through chemotherapy), I was chatting with the mother of an 18-month-old boy with leukemia. As she was holding onto her son's hand, helping him practice his walking, making sure he didn't trip over the IV/med tubes & wires, she said, "But you know, it could be so, so much worse. Like look where we are."

And we looked around at the room full of regularly sterilized toys and up at the glass ceiling that let the sunshine beam down for the kids to bask in, and nodded in mutual understanding.

Her gratitude struck a chord.

Later that night, bored, with Gabrielle sleeping on my chest, I surfed the net looking for videos on gratitude. Nothing anyone said seemed to capture what I was looking for better than the video below.

Maybe it's how real this song is,

Or how lacking gratitude is in our culture,

Or how lacking beautiful songs of gratitude are in our culture,

Or, heck, how lacking people singing anything in chorus is in our culture,

The children's thank you for a bunch of new shoes just seemed so real and authentic,

Honest, heart-felt, and true.

And it reminds me of how lucky we all are,

And how regularly unappreciative we all are.

And how much we can learn about gratitude from those who have so much less than we do.