Gabrielle, 11 months old

A snapshot of you at 11 months.

We have had the best summer at home, and you are getting stronger with each passing day.  You are trying so hard to sit up and can sit really well (when assisted).  I sit you in this little half donut seat, and you love watching us as you play with your toys.  The physiotherapist showed me today how to support you in a standing position and, when I did, you were beaming!  You looked so proud of yourself and it was as if you were saying 'Finally... I can stand!'.

When you beam like that Gabrielle, you fill me up with so much love and joy and laughter.  I love it!

You are still a little bean and weigh 6 ounces more then what James weighed at birth!  Your hair is growing thanks to being weaned off those nasty steroids. Your oxygen levels are getting better too.  By September 29th they plan to have you off oxygen completely!

What a miracle!

You amaze me every day sweet girl with your strength, smiles and your wisdom.

This past weekend we went on a very last minute trip to the Sunshine Coast – our first family vacation!  The weather was scorching hot, one of our nurses got all your meds and equipment ready, we got the boys ready, and we were off on our adventure.

You loved all the attention from your cousins who loved holding you, lying beside you on the bed, passing you toys, and doing anything they could to help!  My favourite memory was when your cousin Max laid beside you, playing with you, realized you were getting tired, and stayed with you until you fell asleep, and then quietly left the room.  So sweet.

Happy 11 months baby girl.  I can't wait to pick you up and hold you tomorrow.  I hope you're having sweet dreams.

xxoo

A Quick Update: End of Summer

Summer ended with a beautiful new addition to our extended family in the form of a neice: Ember Raine Baldwin. Congratulations to Ryan and Michelle ... and such a reminder to all of us that life really is a miracle.

Ember Raine Baldwin

Gabrielle's health has steadily improved since being discharged from the hospital two months ago. While her prognosis hasn't changed for the upcoming winter, her lungs, strength, and (we'd like to think) her post-transplant immune system are all improving. Amy's been going to BC Children's lots and the doctors are pleased with Gabrielle's progress.

Gabrielle, our little fighter

Quite truthfully, the day-in / day-out has been challenging, and for no one more than Amy. She's been so amazing with Gabrielle and all her medical needs (2 hrs in the morning, 1 hr at night, changing oxygen tanks, drawing meds, etc.) and Amy's patience for her has shown no bounds. While I can imagine, I truly don't know where and how mothers of these babies find their strength. It's different for moms. I get that now. And when things are good and everyone's healthy, it's fun for us guys to complain about the 6th gear women slip into once the babies come (which they brilliantly conceal from us during the dating years), but sometimes things with kids don't always go well, and I love and appreciate how my wife (at least) never let's Gabrielle drift from her thoughts (like I often do), always ready and willing to do what needs to be done. It's an amazing thing, really.

Amy & Gabrielle ~ Summer 2011

The boys and I escaped to Davis Bay (thanks Ben and Julie) for a father-son getaway at the end of August, allowing Amy and Gabrielle to stay home and have a mother-daughter weekend. It was awesome, and as I posted on Facebook,

Daddy-style kid trips are the best: no cooler full of groceries, no planned meals, no talking while eating. Add that to the Book of Awesome.

Here's a few of pics:

All you can eat Chinese buffet 

Swimming at Porpoise Bay

Baba / ice cream sleepy stroller ride

And, best of all, the summer ended with a respite trip to Canuck Place. It really is becoming our second home, full of people who understand what it is we're going through, either because they're living it themselves, or because they see it every day. We are so lucky to have been invited into the Canuck Place community. Here are some pictures from our last staycation:

Gabrielle at Canuck Place, Sept. 2011

Amy & Gabrielle during Sept.11 Canuck Place respite 

Regan & Gabrielle

The Ross Family

Thanks again, everyone, for all of your support. While sometimes we feel all alone, we know we're actually not. And that means so much, especially as we see the seasons starting to change, knowing the warm weather will give way to the cold, chilly, flu season of fall and winter.  Thank you.

Perplexed

A couple of thoughts:

I have my good friend Tim Quinn to thank for many great book recommendations (except Steppenwolf), especially A Guide for the Perplexed. Schumacher's book helped me realize many things, one being that consciousness, while most definitely a function of biological processes, is also a phenomenon that cannot be understood in strictly material terms – it exists in a way that transcends "the material."

Me posing in Harvard with Tim and Sarah in 2005 with Schumacher's book in hand.

I have Gabrielle to thank for opening my eyes to the amazing world of biochemistry and microbiology. I wish I had more time than I do to dive into these fields. I wish I could be the super dad who makes CNN and BBC headline news for discovering the previously-thought-impossible cure for his daughter's terminal illness. Dream aside, coming to understand how chemical and mechanical processes govern everything around us – including our very being – is absolutely amazing. See video below for a jaw-dropping demonstration.

 

Yeah, random points ... I know. But I mention them because I've come to realize a lot of people really believe that these two worlds (or levels or reality, if you will) are mutually exclusive – that it's one or the other – and, as such, they fully embrace one, and refuse to recognize (wittingly or unwittingly) the other.

I don't understand this. I don't understand how people can believe in God, Jesus, Zeus, Allah, or whatever and refuse to reckon with the material realities of the universe. Conversely, I struggle to understand how atheists believe that science, a system of reductionism that focuses strictly on the materially observable, is proof enough that no greater intelligence (or 'being") exists in the universe. The 'god-only' believers fail to recognize that their 'believing' originates in a very material brain, and the 'science-only' believers fail to recognize (at least in the mainstream science of today) that there is an entirely different plain of existence beyond the materially observable.

To me, questions arise:

What if "God" (a term I use loosely) isn't something separate from the periodical table, but a function of it?

Or what if the periodical table isn't devoid of "God," but something that produces it?

What if .... shhhhh ... the two exist simultaneously and in harmony with one another?

Whatever the answers may be, all I know is that my darling daughter Gabrielle has forced me to think about these two things at great length: (1) the biochemical building blocks of life in order to understand her I-Cell Disease, and (2) the nature of life and existence in order to come to grips with the fact that she won't be here for very long. And, while I must say that I feel lucky and fortunate for all the insights I've acquired thinking about these things, a part of me wishes I knew more people who thought about them too. It would be so great to talk about all this stuff over a few glasses of vino.

But I don't. People tend to believe in one or the other. Well ... actually, most people today don't really think about either (like who wants to talk about this stuff?).

It makes me think of what my buddy Tim said years back, when I (pot-stirringly) remarked that philosophical questions aren't all that important:  "How can you say that? They're like the most important questions we can possibly ask!"

I guess that's why I'm posting this.

Life's Short: Compliment

Yesterday a new friend complimented Amy and I on this blog. We were beaming. Her compliments were genuine, sincere, and ... well ... not like compliments you usually receive.

She made my day.

For whatever reason, we don't do compliments well in our culture. We tend to make fun of people when they compliment, and we rib people for taking too much satisfaction when they're given a compliment.

When people genuinely do compliment us, our guard comes up: we look around to see who's watching and listening; we wonder what they want from us; we tone-down our acceptance in case they're being sarcastic – "Nice shirt!"

I've taught many, many immigrant students who have struggled to understand our jaded rules around complimenting. Bad is good? Sick is great? And if you like someone, never tell them as much in plain English – you have to guise it as something else (i.e. the scene in Gran Torino when Clint Eastwood teaches the boy how to talk like a man before helping him get a construction job).

Or take academia, for example, especially the social sciences. Here you have the most (formally) educated people in the world ripping each other to pieces about the holes in their arguments, the shortcomings in their findings, or scoffing at the well-intentioned efforts of good people behind certain initiatives (like this one). Publication after publication. Rip, rip, rip.

But genuine and sincere compliments go a long way. They really do. And they're simple. Or rather, they're simply observations of the good in things. All we need to do is share them. We all know that it's important to think positively, but why do we have so many reservations when it comes to sharing the positive things we observe in other people?  Why is it easier to talk about the negative, than the positive?

And I'm not talking about nice shirts. Or hair, or shoes, or eyebrows. I'm talking about really genuine compliments to people who aren't expecting really genuine compliments from you.

And as millions of kids across the world head to school with all the worries that come with new classmates and seating arrangements, I can't help but think the world – or our culture at least – is in short supply of compliments.

Life is short. You really don't know when you won't see someone again.

Compliment them. You'll make their day.

Inward and Onward

Pain is a funny thing.

Imagine a little boy in a soccer game who slips, falls, and breaks his wrist, and, just as he does, a teammate gets the ball on a breakaway, runs down the field, and scores.

Will the boy be cheering with everyone else? Does he even notice there's a goal amidst the pain?

Maybe he does, and the team celebration takes his mind off the pain for a few minutes, but then it comes back.

Maybe someone the boy knows shouts "Come on! Come on!" from the sidelines, unaware of the invisible pain the break is causing, trying (quite endearingly) to be a helpful encourager, with the helpful effect of getting the boy to focus on the game, and not the pain, for 5 minutes or so. But then it comes back.

Maybe a few moments later, while the boy is hunched over, holding his wrist in agony, the ball rolls to his feet, and between everyone on the sidelines shouting and the 10+ other boys charging towards him, pain is forgotten as he works to make the best play he can.

I hate to say it, but that's kind of like what grieving is like.

There is pain.

It draws you inward.

And while it's not entirely obvious from the outside, and while there are plenty of very good distractions that can take your mind off it, it's there, and it's very real.

Like the soccer boy, though, with the broken wrist, I know the pain will eventually go away. That there will be a day that comes and goes where you don't even think about it.

That's one of the amazing things about life on this planet – there are entire universes of invisible systems that take care of hurts and pains in order to help us along in the struggle to survive. From platelets to neurotransmitters to emotional resiliency to helpful conversations, nature abounds with healing remedies.

And that's, I guess, how it works. While pain may draw you inward, life moves onward. Always. And while not all of us are fortunate enough to have access to the magic elixirs we need, some of us are. And whatever they may be, they're worth being grateful for.