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.'"