Friday, September 30, 2011

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.

Wednesday, September 28, 2011

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...

Monday, September 26, 2011

The Genomic Revolution

On a day when I was home with the boys during the week Gabrielle was given her chemotherapy, I remember remarking to my brother-in-law Ben, who knows a thing or two about medicine, about how I couldn't help but foresee the medical community 50 years from now looking back on chemotherapy and cringe with a, "Oh, if they only knew that _____." While chemotherapy literally saves lives today, I think this talk is such a great eye-opener into how fast medicine is progressing right now, and it's crazy to ponder where things will be in just 15 years.

Friday, September 23, 2011

Team Gabrielle - $10,300 for canuck place!

What an absolutely amazing day I had last Sunday as the four of us competed in the Canuck Place Adventure Challenge.  A super big THANK YOU to the three girls: my sister Julie, and friends Nadia and Adrienne for sharing in this incredibly special day with me.  Thank you for organizing the t-shirts, the flashy accessories, the super awesome road bike, and for pulling me across the finish line (that trail run was a killer)!!  I loved every single minute of it!!!  I even woke up this Wednesday longing for a killer workout at Innovative Fitness with Isabelle (the best workouts ever!).

Thank you to every single person who sponsored us for this event.  I feel so lucky and blessed to have so many family and friends who are supporting us on our journey.  I've said it once and I'll say it again, Canuck Place is amazing.  As a friend put it the other day, even the people who don't work directly with the kids ooze with love and positivity.

When you've got three kids under the age of 4 with one requiring lots of attention, an event like this would be impossible to do if you didn't have the support from your husband.  Regan, thank you for knowing me so well and encouraging me to do the things I love despite our crazy-busy life at home.

The absolute best part of the race was coming across the finish line and seeing my sweet angel Gabrielle waiting for us.  Thank you Gabrielle for inspiring me and teaching me to never give up and to keep going no matter what the challenge.

Thursday, September 22, 2011

Laughter #7 ~ Dance Fights

Anger sucks. I get angry, and it's no fun. People I know get angry, and it's no fun.

The thing about anger is you never feel good afterward. You feel empty, maybe guilty and almost always sad. That's probably because anger is a secondary emotion – there's always a reason why we're angry! But I guess it's easier and maybe feels better (at the time) to be angry rather than confront the source of hurt that's causing the anger.

Anger is especially awful when it leads to fights. And while I've seen many books on how to deal with anger, or how to rid your life of anger, or how destructive it is, I think if we had dance fights (like the guys below) instead of real ones, we'd feel a whole lot better.


Sunday, September 18, 2011

Team Gabrielle Did It!

A super quick post to say that Team Gabrielle – Amy, Julie, Nadia, and Adrienne (and Brenda, too, who participated solo and won the women's race)  raised $9000+ for Canuck Place in today's Adventure Challenge, and finished in pretty pink style with Gabrielle waiting for them at the finish line. So proud of everyone!

Nadia, Adrienne, Amy, Gabrielle, Julie

Thanks to Isabelle (the super trainer at Innovative Fitness) for the pic!

Saturday, September 17, 2011

End Points

I don't know why this is, but end-points provide us with us meaning and purpose.

We always find that extra something when we see the finish line in a race.

We always save the real conversations for the drive to the airport.

We're often ready to forgive an old friend for an old grudge right before they move away.

We do our best work the night before a deadline.

We have newfound patience for our kids right before they reach a major milestone in life.

We say I love you when the end is near.

We contemplate life and why we're really here when faced with death.

The funny thing is, everything ends! Everything will come to pass. From the race, to the deadline, to our last breath here on earth, everything will come and go.

I think knowing things will end is half of it. And I think remembering to remind yourself that everything ends is the other half. It makes you appreciate right now a whole lot more. It makes you appreciate what you have a whole lot more.

End-points put things into perspective. They open your eyes to what is wasteful, superficial, and unimportant, and they help you hone in on what really matters. In turn, they can also be motivating and inspiring too.

And while their realities can be down-right gut-wrenching and anxiety-causing, I have to wonder: Are the end-points themselves causing those reactions in us, or is it having to confront the illusions and fallacies of what we held to be important and true beforehand causing these reactions in us?

Well, if end-points are inevitable, you tell me.

If they're coming anyway, why wait for the arrival of an end-point to contemplate and appreciate?

Tuesday, September 13, 2011

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.


Sunday, September 11, 2011

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.

Saturday, September 10, 2011


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.

Thursday, September 8, 2011

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.

Saturday, September 3, 2011

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.