Wednesday, June 29, 2011

Monday, June 27, 2011

You Can't Always Live in the Moment

Learning to appreciate the moment is one of the greatest gifts Gabrielle has given us, but you can't always "live in the moment,"

(Well, to be accurate, we're always living in the moment, so what I mean to say is ...)

You can't always be "present."

Sometimes you get caught in a rut and need to step back and look at the big picture (past, present, future) in order to get moving again.

Lots of times you get caught up in tasks that require a lot of your mental attention.

Sometimes sports highlights, home reno shows, status updates, and text messages consume your attention like a vortex.

Or your kids, or partner, or family, or friends, or the idiots who drive slow in the fast lane (who totally don't understand that they're cluelessness is like causing a 20+ car jam behind them and when you give them the "Come on!" yell and gesture as you drive past they look at you with that annoyed / condescending/ "learn-how-to-enjoy-the-moment" look on their face) ...  sometimes these people stress you out and you think about how they stress you out, and why they stress you out, and how frequently they stress you out, and how if only ______ ....

Sometimes people talk to you – and they talk and talk and talk – (I'm frequently guilty of this, or so says Amy) and your concentration drifts and you start daydreaming the moment away.

Sometimes (and maybe not as often as we would like) you catch yourself thinking about your last bank statement before you order dessert, or the next drink, or the really good orange juice in the grocery store, and this ignites a series of thoughts that have nothing to do with the moment.

And other times you worry about how things will go, or how they won't go, and what you can do to mitigate heartache and failure and maximize opportunity and the chances for success.

You can't always "live in the moment." You just can't.

But what we're learning is this:

By making an effort to appreciate more "moments" than we did before, it actually becomes something of a habit. And this habit is helping us to not let as moments pass us by, and it's also reminding us that – even though we can't do it all the time – "the moment" is all we got.

Saturday, June 25, 2011

"Why Are We Happy?"

Growing up I was always taught that love is a choice. It's true. I really believe a married man or woman could fall out of love with their spouse in a matter of days if they chose to let their mind go that way. "The secret," my Grandad always said, "Is choosing to stay in love." That was about the extent of his advice (short and sweet), but it was easy to fill in the blanks: Choose to focus on the good things; don't dwell on the bad.

I think the principle is true in other areas of life too, including happiness through tough times.

No matter how difficult some days are with Gabrielle, each and every day Amy and I make an effort to focus on the good things ... the miraculous things.  Every day is a choice. We both know that, in a matter of days, we could let our minds go down deep, dark paths should we let them. But we don't. They're scary and dangerous. Instead, we choose to be happy – despite the grief – for our kids, for each other, and for ourselves.

And it looks like we may have stumbled upon something that scientists have only recently turned their attention to, which, to their credit, is awesome, but which, like so many other things about research, is just so darned funny when you think how natural and intuitive it is. Anyway, check out Dan Gilbert's talk below. I watched it last night and, if you're like me, I guarantee it will challenge some of your assumptions about what makes you happy too.

FYI: his best-selling book is Stumbling on Happiness.

Thursday, June 23, 2011


You know, I wrote two months ago about how humans are one of the most social animals on earth. We are. But, in talking with my wife just a few moments ago, I could hear her listening to the "Tree By The River" song from my post the other day, and I got to thinking about how the ideas from the two posts are related: we are social animals indeed, but our social bonds are like invisible threads that provide us with meaning and richness ... kind of like how the invisible threads between the notes and beats in a song make it more rich and beautiful than each would be on their own.

Tonight, however, I can't help but observe how disjointed and disconnected our society/culture is. I'm not saying I know how we can do it better, but MAN! Surely we can thread some things better, no?

* I've had the news on for over an hour and there's nothing connecting the stories into a meaningful whole. It's just random story after random story and – when the hour ends – then what?

* Hospitals (like most large institutions) are utility-based, not people-based, and now that Gabrielle has moved up 3 floors (from ICU back to oncology), we'll not see anyone we've spent time with the past week, but are re-united with the oncology staff who we said goodbye to a couple weeks back, yet we won't see anyone here at the hospital once we go home.

* To help people endure their tough times and/or uncompromising realities, we remove them from their homes and communities and put them in treatment centres, old-folks homes, mental institutions, etc.

* Which makes sense because – with a few exceptions – we've lost the age-old-art of inviting neighbours over for cocktails or tea, or hosting block parties, and nobody - like NO ONE - lives amongst the people they work with on a day-to-day basis.

* Which makes me wonder if any of us even know (or care) when the person living 3 doors down from us is moved to a treatment centre, or an old-folks home, or a mental institution? Our friends, family members, and co-workers definitely wouldn't because ... well ... they wouldn't even know the person you lived 3 doors down from.

* But heck, we don't even challenge the kids in our schools to think about how what they learned in biology relates to what they learned in literature, or math to religion, or fitness to chemistry ... and we wonder why no one learns anything in school!?

Again, I'm not saying this is a bad thing. I get why things are the way they are in a practical sense: specialization and division of skill and labour; realities of large populations centres; collective desires for privacy and the ensuing urban planning and transportation requirements; etc.

But on a night like tonight, when Gabrielle and I are so far removed from Amy and the boys who are at home (and removed from everyone who has been so incredibly supportive through this for that matter), I can't help but observe these things and wonder what we can do to somehow thread ourselves better ... especially considering how natural it is, and how well it works when we do.

Wednesday, June 22, 2011

Gabrielle's Getting Better, Leaving ICU Soon

In the last 48 hours Gabrielle's oxygen requirements have dropped to the point that the doctors are planning to discharge her from the ICU tomorrow and send her back up to the oncology ward (where we were for the 10 weeks of transplant). While the last 9 days have been emotionally exhausting in that they've forced us to come to grips with some realities/decisions that are so, so difficult to comprehend, we're absolutely thrilled to see her playful spirit return, and are reminded of how precious life is.

Thanks for all the support everyone, and I'll leave you with a little video of Mommy playing with Gabrielle in the ICU:

Tuesday, June 21, 2011

Music Works

You know, the amazing thing about music is that it GRABS us into right now. I mean, really, none of the notes in a song make sense on their own, and all the notes in a song can't be clumped together into a unifying whole, like we so often try to do with the events in our life, or the universe for that matter.

Music just works.

Note after note ... beat after beat ... bringing us into the moment, taking our minds off things that don't practically exist, like the past and the future, flowing with time instead of fighting it.

Tonight I like this song:

And this one too, if you're really interested.

Monday, June 20, 2011

3 Seasons, Heading Into 4

Tomorrow will mark 4 seasons of our time with Gabrielle at BC Children's hospital. I was thinking about this on my walk to Safeway (along Oak Street) and how I've seen the big leafy trees through almost all the stages, and how much we've all grown and changed.

Gabrielle, 2 days old in the NICU in BC Children's (October 15th)

 Michael at the park down the street from BC Children's.
Hard to believe how much he's grown up through all this.

Amy and Gabrielle in for a pre-transplant
appointment in January 2011.

The winter beach on my run the morning before Gabrielle slipped with
bronchiolitis and went from Langley Memorial Hospital to Children's.
Let it be said that Amy was far too concerned and "in tune"
to be going for runs that February morning.

The boys standing in front of Canuck Place during Gabrielle's February visit for
bronchiolitis ... a place that seemed surreal and "not for us," and one we can't
wait to go as a family (once we get out of ICU) after being disjointed for over 3 months. 

Gabrielle and Amy after her surgery to get the main line put in to
begin the chemotherapy and stem-cell transplant in early March.

Vancouver at the beginning of Gabrielle's transplant, early March 2011.

Gabrielle in the Day+30's before her second in-tranplant set-back
with the coronavirus, basking in the warming spring sun shining
through the hospital window.

Jimmy and Micky going for a nature walk with their cousins
Cole and Gavin in the budding spring woods.

Daddy taking Gabrielle for her first walk outside the
hospital after roughly 80 days. The leaves were out,
the birds were chirping, and she and I were overwhelmed
in very different ways on that evening in the late spring.

Mommy, Micky, and Jimmy at home with Gabrielle for all of 12 days before returning.

Mom with Gabrielle the day after being ambulanced back to BC Children's with
dangerously low oxygen levels. The room with the warm, close-to-summer sun was
short-lived as she was transferred to ICU for need of high-flow oxygen.

Gabrielle (8.5 mo.) and brother Micky (almost 2 yrs) in
the ICU just days before the beginning of Summer 2011.

If you had asked me on October 12, 2010 what kind of pictures the upcoming 3 seasons were going to include, I don't think I would have guessed one of these.  It's amazing what time holds in store ... and as the leaves bristle in the breeze on this summer eve, I can only wonder what the next few seasons will bring.

Sunday, June 19, 2011

10 Signs You're a "Dad"

I think every Dad (who ends up embracing the fatherly life) endures a transition from "cool guy" (at least a self-perceived cool guy), to "a Dad." On this Father's Day, here are 10 loud and clear signs that are telling me that my "cool guy" days are gone and I'm officially "a Dad."

1. You regularly preface sentences with, "When I was your age ... "

2. The thought of going to a movie on your own sounds awesome.

3. When flipping through TV channels you automatically pause on cartoons your kids watch.

4. You wear the same 'at home' clothes multiple days in a row because you like them, they're comfortable, and you know no one's going to stop by on successive days to ever find out.

5. You accept the fact that the good looking ladies out in public aren't smiling at you, they're smiling at your kids.

6. Tired of trying to put the kids to sleep, you throw them in the mini-van and drive by the karaoke bar a few blocks from your house just to look at people out having fun ... and sometimes, when the stars really align, and everyone in the house has fallen asleep, you'll sneak down to karaoke bar to grab a beer and listen to horrendous singing because it's better than the 10 o'clock news on a Saturday night.

7.  You don't even think about going to the men's fashion section in the department store anymore, and  – if you're alone – go straight to the power tools and electronics aisles ... and, if you're with kids, it's to the diapers or toy aisles.

8. You're continually reminded that your deadly profanity combinations are no longer appropriate and work to replace them with words like "shoot" or "darn" and "flip" (but each time you do you feel like a part of your old self is dying).

9. You look out the kitchen window on a weekday night in awe at the 40-year old bachelor who lives across the street who's showing the 30-year old blonde (in her knee-high boots and mini-skirt) all of the cars he owns in his driveway ... and, as they speed away into the sunset, you can't help but think that it's one of the most beautiful things you've ever seen.

10. You find Chevy Chase funny in an entirely new and painful way (watch clip):

Friday, June 17, 2011


Oh boy.  I don't even know where to start.  First off, I have thought a million times today that I will never, ever, ever take for granted having my family together under the same roof again.  Ever.  It sounds so cliche, and I probably sound like the biggest broken record, but my heart is broken.   I miss waking up in the same bed as my husband.  I miss getting woken up by Gabrielle wanting to eat, and I even miss the early morning wake up's by Michael and James.  Do I dare say I miss the chaotic dinner time (thank goodness for wine!) and I really miss the peacefulness of the night once the boys are off to bed.  I miss our life at home with play-dates, friends, activities and all that other fun stuff you do when living a 'normal' life.  I miss being together.

Sleeping peacefully at home post-transplant

I will do anything to ensure that Gabrielle has the best quality life I can give her. A life full of love.  I make sure to kiss her belly, her arms, her face, and her toes so she can feel how wonderful it is to be touched.  I make sure to laugh, sing songs and play games with her so she can experience 'play' and how amazing it is.  I let her brothers give her endless amount of attention so she can experience friendship and sibling love.  I make sure she gets lots of time with her grandparents so she can experience all the wonderful things grandparents offer that parents cannot.  I make sure she has time with her cousins so that she can experience how wonderful and loving her big cousins are, and I let them talk about how excited they are for Gabrielle to do dance and ballet and how one day they'll be in grade 7 while Gabrielle will be in Kindergarten at the same school.  I give her opportunities to cuddle with aunties, uncles and family friends as she watches and listen to the chaos off all the kids playing around her. I make sure that while we were at home, and even at the hospital that she gets sunshine on her face, wind and the amazing ocean air to breath in.

Bath time
While in the hospital, I make sure that she only gets suctioned when absolutely necessary.  I make sure that they don't put the mask right around her face when doing nebulizers because it scares her.  I make sure that when they do x-rays that they don't clamp her arms straight up beside her ears because her range of motion is poor and it hurts her.  When the nurses aren't looking I take her little gloves off her hands at night because I know how much she loves to hold her soother, and I request to take her blood pressure cuff off her arm at night because she can't bend her arm to hold her soother.  I make sure that when they do any procedures that I am there with her and when the nurses or doctors ask if I want to leave because it's hard to watch your child in these situations, I always decline because if Gabrielle needs to endure it then the least I can do is hold her hand and look her in the eyes so she knows I'm with her.  We will always be with her every step of the way.

And I can't ever forget what James said to me after Gabrielle came home post-transplant.  He said: "Mom, I wish I could be Gabrielle."   I had no idea why he would think that or how he was processing things in his own mind but when I asked him why he thought that he said "because I wish I could be as brave as her."  My reply?  "Me too James... me too."

So here I sit in the ICU room wishing that Gabrielle and I could be at home.  After 4 days in the ICU there have been no real major improvements.  The corona virus continues to wreak havoc on Gabrielle's lungs and the doctors are waiting to see if the high flow oxygen support, nebulizers, suctioning and medications will support her enough until her immune system (which is being suppressed due to transplant and to prevent GVHD) can fight this virus.  We have been in contact with Canuck place and have the opportunity to all go stay there together for a 'holiday' from the hospital.  We are really looking forward to some time together as a family.  Regan, myself, James, Michael and Gabrielle.  Together, under the same roof.  Even though we won't be at home, at least we'll be together.

Something I have learned to never take for granted again.



I had a great conversation with a pretty amazing doctor today about "hope," and it made me realize how often that concept has come up through our journey with Gabrielle. I agree with Stephen King in that "hope is a good thing." In fact, I think hope is a wonderful thing because it provides us with a belief that the magnificent is possible. But hope is also a loaded word. It's full of expectations. And while some expectations are good and potential-challenging, some hopes set us up for anguish and frustration.

When Gabrielle was born and we first learned of her I-Cell diagnosis, it quickly became apparent that a "miracle cure" just wasn't in the cards, at least not for her in her lifetime. It's just not realistic. That reality was a tough pill to swallow (still is). What do you hope for if your baby girl will likely die long before you will?

Knowing that, what was also difficult (when she was born) were the well-intended messages from people talking about "the power of hope and miracles" ... as if the hoping for the miracles would cure Gabrielle's incurable diagnosis. I totally get the sentiment, and I do believe in the power of miracles, but the ones people were reminding us to hope for just weren't going to happen. There was no "hope" for Gabrielle ... at least in the traditional sense of the word.

Only a month ago I was out walking with my boys along the beach when I bumped into a good friend's mother. We had a great conversation, and she mentioned how much she enjoyed our "message." I said something to her that really crystallized my new view of hope. Something like,
"You know, hope's not about a cure. It's not about a magic bullet. It's not about touchdowns. Hope is real, no doubt, but in order for it to be real, it has to encompass certain realities. Realities like we're all going to die. You and I are going to die, and our children too. To think that hope can overcome realities like these isn't right. It's false hope. It's foolish, in fact. I think real hope is about our being able to appreciate the magnificent in light of these realities."
 – A quick aside: You know, I just looked up the word "hope" in our world's most populated encyclopedia, and I'm astonished by how little is written about it. Like seriously! Considering how much we use the word, how ubiquitous it is in our day-to-day ethos, can you believe it?! You'd think there'd be pages of writing like there is for anger. Very interesting. –

So this brings me back to my conversation today with our most amazing doctor (who came down to the ICU from oncology just to see how we're doing). We were talking about hope, and she was sharing how "hope-driven" she believes medical work is, and how it's really tough when things don't work out for their patients (i.e. working out meaning saving lives).

And that's the amazing thing, I said, about Gabrielle: despite the tragedy, she's opened entire cities worth of perceptual doors for Amy and I and our family members. And somehow, given who we are and what we're experiencing with her, we've refused to give up on "hope," but our understanding of it has had to change in order to encompass the realities of her circumstances. "Oh yes, hope is real," I was saying, "but it's more than just the future, and it cannot deny the inevitable, and it cannot deny reality."

I liked what our doctor said next, "Yes, and it's like our attachments to our hopes, to our expectations of how the future will unfold, deny us from seeing and appreciating all the beautiful things on the periphery." I couldn't have agreed with her more, and I shared how I think this happens because living life is something like wearing a miner's cap (see this earlier post for more on that idea).

Which reminds me of the conversation I had with the emergency nurse 4 nights ago when we were ambulanced back to Children's. We got to talking about death because I wanted to know what death from a lack of oxygen would look like. I'll spare you the details, but she did talk about how her time nursing in Ethiopia made her realize how beautiful death can be, and how much she learned from the Ethiopians in their acceptance of death as a part of the life cycle, and how our culture denies, denies, denies it! And how wrong this denial is. And how much heartache it causes us when we're finally faced with it and its reality.

This denial makes me wonder if, in our Western culture, when reach "the point of no return," that's why we consider the situation to be hopeless. That way of looking at it seems so wrong to me now.

And here we are with Gabrielle. There's no "hope" for her in the traditional sense, because the traditional sense entails a cure ... a remedy. And this fact always reminds me of what our paediatrician (who's as much a philosopher as he is a doctor) said about our culture:
"So much of the adjustment has to do with how we all expect our children to live a 75 year life ... but that's not always the case ... and it's especially not the case throughout the pages of human history. But when that doesn't happen, it's really, really tragic in our culture today, because everything's perfect."
So yeah, Gabrielle isn't going to live a 75-year life. In fact, she's struggling with this respiratory set-back in the ICU, and we're just hoping she gets better really soon ... so we can go home and have a few more weeks, and months, and maybe years with her as a family. But that's using "hope" in the expectational sense. And that's exactly why it's a loaded word. Not a bad word, it's just loaded.

So what am I saying?

Well, I think hope is a beautiful word. I really do. But I don't think we should use it like Stephen King uses it in Shawshank Redemption. I mean, let's face it, Andy (Tim Robbins) was a very patient genius, and the story worked because his hope of escape was matched by his genius ability to patiently escape. So while I agree that hope is essential, I – and quite paradoxically – also agree with 'Red' (Morgan Freeman) in that hope can be a dangerous word too ... especially when we hope for things that aren't attainable and/or grounded in reality.

So what can we hope for?

Truthfully, we can hope for anything we want. It's just that sometimes our unquestioned hopes can cause us to 'fall hard' when they don't materialize. And I think that's why it can be a dangerous word. Does that mean we should quit hoping in this sense altogether? No! That's not at all what I'm saying.

But can we hope without that embedded danger?

And I think this is what I'm talking about, because we're learning you definitely can, but it's a different kind of hope, and the answer is paradoxical: On the one hand I think we can hope for what we can control, but on the other hand I think we need to accept the uncontrollable. And if there's one thing we can control in spite of the uncontrollable ... well ... it's right now. 

As silly as that sounds, I think our "future hopes" sometimes rob us of the wonderful moments that are passing us by. Like what's more realistic and beautiful? To hope for magnificence in the moments we're presently in and can control? Or to hope for magnificence that future moments may or may not bring?

Ultimately I think we can hope for both, but I think we would do well to consider how "future-loaded" our hopes are, whether or not they're realistic, and whether or not our future-loaded hopes are preventing us from appreciating the "periphery magnificence," as our doctor put it, that each day brings along the way.

Thursday, June 16, 2011

Quantum Mechanics and Our Connected Existence

The implications of the findings shared in this video are staggering, and I hope to share some of my insights that relate to them in time to come.

In fact, this video, especially his final remarks of, "You're connections to all the things around you literally define who you are," is enough to initiate a massive paradigm shift in how we view the universe and our place in it. I can't wait to learn more.

But one thing at a time ... I'd hate to run out of things to say (ha ha). But I will say, though, that these findings are really, really exciting for me. They seem to jive with so many of my own hunches and intuitions about why we're here and what it's all about. And maybe yours too!

Feel free to comment, contemplate, or question. Thinking and talking about the essence of life is definitely time well spent!

Wednesday, June 15, 2011


So here's Gabrielle and I watching the final game of the 2011 Stanley Cup Finals (Canucks vs. Bruins). We're roughly 3km from 200,000 people watching the game in the street, and we're likely having way more fun than they are. Our fun is measured, though, as the boy next to us in the ICU is struggling to stay alive, and the other nurses tell us that several other children in this ward (along with their families) are knock, knock, knocking.

I don't mean to be a downer (you know, the guy who reminds everyone of the starving children in Africa at the end of a good laugh). I'm posting this more for my own records/memories than anything else, so I can remember how "sport" – while beautiful, exciting, and important in so many ways – originally meant "a pleasant pastime" away back in the 1400's.


Tuesday, June 14, 2011

Gabrielle in I.C.U. (But Doing Better)

Around midnight last night the doctors at BC Children's moved Gabrielle from the oncology ward to the intensive care unit (ICU) as she was working too much to get oxygen into her body. The doctors/nurses in ICU set Gabrielle up on "high-flow" oxygen and, while she's still taking roughly 60 breaths a minute, she is improving.

Amy spent the night with her and took these pictures this morning.

Gabrielle, 10:00am, Tuesday, June 14th, 2011

To help her lungs absorb oxygen, Gabrielle was administered Ventolin every 1 - 2 hours yesterday and into the night. The upside is that these help her breathing, the downside is they make her irritable and keep her awake when she needs sleep so badly. The picture below made my day.

Gabrielle catching up on much-needed rest in the ICU.
12:00pm, Tuesday, June 14th, 2011.

We love you Gabrielle. Hang in there!

Monday, June 13, 2011

Back to the Hospital, Oxygen is Good

Gabrielle's lungs just can't get enough oxygen to her body on their own, or even with the 2L of oxygen we have set up for her at home. Her lungs are clear, her passages are clear, but we think it's her I-Cell lungs that are causing her the increasing difficulties.

After getting assessed at Peace Arch Hospital near our house, the emergency doctor ambulanced her back to BC Children's where she and I have been working with the doctors and nurses to find the magic cocktail of treatments and meds. Bronchodilating nebulizers seem to be doing the trick for now, and they added a new antibiotic.

We're back in the oncology ward (just now) and I write this as Dana (another amazing nurse here) does her initial assessment of Gabrielle. All for now.

Saturday, June 11, 2011

"That Family"

I lived away from home through college, and in my fourth year I roomed with 2 sisters after a crazy year in the Nanaimo party house on 637 6th Street. Living with girls was definitely different. For example, every Monday night my girl roomates would invite a whole slough of other girls over to watch Party of Five (Marla, Michelle, Melissa, was it Mondays?). It was the most depressing show I ever tried watching (imagine Steel Magnolias meets Days of Our Lives every week) and it didn't take long for me to get in the habit of going to one of the guys' to play video games ... or sometimes even to the library to study. Point is: when Party of Five was on, I had to get out.

I hated Party of Five, and so did most of the guys I knew (with a few guys being exceptions, and they always justified their viewership by explaining how hot Neve Campbell and Jennifer Love Hewett were). Anyway, from what I remember, none of the characters had parents (they all died or something), one of them was an alcoholic, all of the relationships were dramatically on-again/off-again, people got cancer, boyfriends were cheating on girlfriends, everyone was struggling and grieving, and whenever I got home early, it was always to an apartment full of crying college girls talking about how they couldn't believe this and that happened and so and so said that. Ugh!

I took a lot of pleasure in teasing the girls about the show, always saying how the "Pof" writers were probably pressured to layer tragedy over tragedy in order to keep their "tragedy-junky" viewers satisfied, which would in turn satisfy the network execs who demanded solid ratings for prime-time. I don't know what happened to the show after '98, but I'm certain either (a) the tragedies became too unbelievable to continue watching, or (b) viewers became too exhausted by the relentless tragedies, or (c) a combination of both.

I mention this because ... well ... 13 years later, it kind a feels like our life with Gabrielle is a like being stuck in a season of Party of Five. I don't mean this cynically, simply ironically. Amy and I post Facebook updates and most of the replies are from women, with a few guys commenting as well (yeah, yeah, yeah, Amy's pretty cute). Many tears are shed because Gabrielle's story does pull at one's heart-strings.  And when we showed up at the hospital less than two weeks after Gabrielle's grand departure, the Facebook "Likes" to our status updates ramped up in the same way Pof ratings ramped up whenever Bailey went on a drinking bender and cheated on Sarah, or when Charlie told Kirsten about his disease.

(and oh yes, I should also mention that I also have a semi-permanent five o'clock shadow like Charlie)

So what am I saying?

I guess what I'm saying is that I'm realizing families who endure great adversities like ours sometimes are the last to realize that they're "that family." You know, the family that gets talked about at soccer games and get-togethers (and then when they show up it gets really quiet).  I think it takes a while to realize that you're "that family," largely because you don't want to be "that family," and also because when you're "in it," the points of reference aren't as contrasting as they are for people living normal lives.

But to anyone reading this who's enduring something equally difficult, I think it's okay to be "that family." The hurt, pain, and struggle makes you stronger. And there are some wonderful upsides. Random people will randomly tell you how much they care about you. People will want to help you in ways you didn't know you needed help. People will draw strength from your strength, and that will make you stronger in ways you didn't know you could be.  And the insights you'll acquire about the meaning and importance of life are ones you never would have acquired otherwise, providing you with amazing new perspectives on our purpose here.

They say adversity builds character, and I really believe that. And what I think is just awesome is that "character" comes from the Ancient Greek word "kharakter," that meant "symbol or imprint on soul."

So while no one wants to be "that family" who gets talked about like a Party of Five episode, I guess a different way to look at it is that you have the honourable privilege of imprinting on people's souls, and growing in amazing ways you never would have before.

Thursday, June 9, 2011

Day+78 ~ Back at Children's Hospital

So on Amy's third day trip to the hospital this week with Gabrielle, the doctors decided her oxygen saturation levels weren't good enough to let her go home. Three nights ago she was grey/pale, a pretty good sign she was de-satting badly. We didn't know without a monitor. She also wasn't eating and was throwing up what we did feed her. With hindsight, the doctors thought her sat-levels were low enough that her body was forgoing food for the higher priority of oxygen. It's a theory, but it fits her symptoms presentation.

Long/short: the cause of her set-back is a mystery, but the reality is she needs more hospital care. Hopefully it's a short stay.

Here's a little bedtime song from Amy, James, and Michael, sung on Gabrielle's first night back at the hospital. Enjoy.

Wednesday, June 8, 2011

Video Overview of Lysosomal Storage Diseases

I find it absolutely amazing that there are entire universes of activity right within our bodies. I can't help but think lysosomal storage diseases are hundreds of millions of years old, affecting all sorts of reptiles and mammals, given their elemental, cellular nature.

I wish I paid more attention to this in high school science so I could talk to the doctors more about Gabrielle's condition, but it was tough because we had to sit at lab tables with stools that were too high so you couldn't fit your legs under them and then your but would get numb and our Indian-exchange-teacher wouldn't let us stand up so by the 7th minute I couldn't concentrate at all and focused more on testing out different sitting positions to help the 72 minutes go by easier. I got 56% in Biology 11 with the stools (when we studied genetics) and 89% in Biology 12. Amazing what proper desks (and a hot study partner who I could never beat on exams) does for achievement.

Anyway, here's the video:

Monday, June 6, 2011

Day +75 ~ At Home Update

Being at home is great, but being at home is crazy. As messed up as it sounds, there's a part of us that misses pressing a button at night when the beeps, cries, and buzzers sounded knowing well-trained nurses would whisk into the room and deal with the issue at hand.

While much of the exhaustion is due to having a 4-yr-old, 22-mo-old, and 8-mo-old in the house, Gabrielle and all the meds, central line care, NG gravity feeds, and oxygen tanks definitely add to the grind.

While we sit on the couch right now (Amy, James, Gabrielle, and I), Amy looked up at all the parenting books on the bookshelf and said, "You know, not one of those baby books could have prepared us for this. Not one." It's true.

So here's the end-product of what we have energy for right now, with the thanks of our laptop:

Funny faces:

And James talking:

Wednesday, June 1, 2011

Healing Home

Enjoying cuddles with her cousins and brother
We've been home for 5 full days.

The first night and the first full day were almost too overwhelming and I have to admit, I thought to myself many times, how on earth am I going to do this?  We came home with bags of supplies and medicines as well as all the equipment to keep Gabrielle hooked up to oxygen.  Yes, the learning curve was incredibly steep but we've managed to make it through the first 5 days.    :)

It's wonderful how adaptable us humans are.

It has been amazing for us to finally be at home together.  The boys adore their sister and love to hold her and pass her toys.  The most incredible thing about being at home is seeing the change in Gabrielle.  She is a completely different baby.  She loves the busy house, the laughter, shrieking, yelling and sound of all the lively kid voices.  She loves being held by her brothers, cousins, grandparents, aunties, uncles and friends.  She loves the stimulation that she wasn't getting in her hospital room towards the end of her stay when she needed it.  She loves going outside on the deck and in the backyard.  She is smiling more then I've seen her smile in the past 83 days and her breathing at night is even calmer.  It makes my heart so happy.

Brother James helping with NG feed
Despite the huge adjustment (I knew it would be, I just didn't know what it would feel like) we are busy, utterly exhausted, and happy to be at home.  We need to be careful until roughly Day + 100 (July 1st) where at that time she'll have her central line removed and will be off most of her medications.  Her lungs are still a concern as she continues to fight her coronavirus but her counts from her transplant are amazing.  We are still going in to clinic for follow up appointments with the doctors.

Did I mention how wonderful it is to be at home?  My next challenge is going to be taking Gabrielle for a walk in her snuggly and oxygen tank!  Wish me luck!

I can't end this post without displaying my excitement for the playoffs.  James hasn't taken his Canucks jersey off all week until I made him put it in the wash today, it was a little stinky. Loved the game tonight - Go Canucks Go!!!  

Approaching Things Positively vs. Being Positive

I think there's a huge difference between approaching things positively and being positive.

"Being" means "you are." If you're "being positive" it means you're always positive.

Sometimes horrible things happen. Sometimes tragic things happen. Sometimes abominable things happen.

We've learned that you can't always be positive. Some realities just aren't bursting with positivity. Some outcomes just don't have "positive" endings.  You can't always be positive.

Positivity isn't a switch you can turn on. You can't just - poof - turn something horrible, tragic, or abominable into a positive. That's not real. It doesn't feel authentic. It feels fake after a while (especially when you hear other people tell you that your negative is actually a positive).

You can, however, approach things positively. An approach is something you work on. It's not what you are. It's not a state of being.

Despite the negative, I think you can make an effort to focus on other positives in your life.  But I think it's important to acknowledge the negative instead of denying its existence. I think that's an essential step one needs to take in order to come to peace with the negative's existence.

You can acknowledge what's bad, but you don't have to let it consume you. You don't have to let the negative overshadow all of the positive. But you have to work at it. It's an approach that – I think – has more positive results than negative ones, and that makes it an approach worth working at.