Saturday, May 28, 2011

Home (After Transplant)

We did it. Gabrielle made it home after 78 days of transplant.

Thank you nurses, doctors, social workers, custodians, Red Cross folk, and volunteers at BC Children's Hospital. We said it over and over again, there is something special about Children's – especially the 3B oncology ward – and it has everything to do with you and your caring and compassion.

Thank you Derek, Gwyneth, Phaedra, Ashley, and Aaron for spontaneously helping me sterilize the house until late last night, and Stephanie for the dins.

Thank you Wayne, Jane, David, and Doreen. Your generosity as parents through this has been boundless.

Thank you Laronde Elementary community, especially the teachers who made us so many meals, and little Emmett for your amazing thoughtfulness with the penny drive.

Thank you Amy's "Mom's Group" for all the meals and drop-offs.

Thank you Julie for the hospital sleep-overs which gave us a couple of nights home together with the boys.

Thank you Elena for keeping our home playful, wonderful, and stable. We're so lucky to have you.

Thank you friends and family for all your wonderful words and generous gifts ... they gave us something positive to talk about every day, and helped us keep going.

The most amazing thing through this was how much support we were given, and sometimes – especially on the tough days and weeks – we forgot to say thank you. Thank you to everyone we forgot to say thank you to.

And a big thank you to all the amazing families we met at the hospital. Your warm and knowing smiles made us feel like we're not alone. Like we're all in this together. It was so hard to see your children sick and struggling. You inspired us. Your being there supported us. It made us feel that we're a part of something special. Something greater. Thank you.

Thursday, May 26, 2011

Energy, Time, and Tears

If there's one thing I've been able to self-monitor more than ever before (i.e. since Gabrielle was born), it's been why and when we cry. Like what's up with all the tears? Come on, get it together man!

So I did some serious internet research (i.e.wikipedia) and none of the explanations satisfied me. I did, however, find it ironic that "The question of the function or origin of emotional tears remains open."

Sure, we all know the various reasons why we cry. We shed tears of loneliness, helplessness, loss, physical pain, and, of course, tears of unmet expectations (see earlier post). And while I began writing this post with a particular idea in mind, it's become something more.

Let me explain, in my usual round-about way.

Energy.

Have you ever really thought about E=mc² before?  While I won't even pretend to say I get the complete concept, I get the gist, and it's pretty amazing.

Einstein's formula helped people understand just how much energy there is ... everywhere. Newtonian physics (which, sadly, is over 300 years old and the only physics our kids learn in schools) held that bodies of mass at rest don't contain much energy at all. E=mc² proved that there are massive amounts of energy in all bodies of mass, even ones that aren't moving or radiating energy.

Basically, "E" equals the mass of an object times the speed of light squared. I italicized those two words on purpose because ... well ... like that's pretty crazy if you think about it. The speed of light moves at 299 792 458 meters per second. So I'm like 210 lbs and I feel a bit queasy when my 1997 Accord gets over 150 km per hour (mostly because of the car, and - for the record - I would be totally comfortable at 240km/hr in my brother-in-law's Porsche). Anyway, the speed of light is fast, and that formula makes "E" almost incomprehensible.

To save myself time, I borrowed an example of just how much energy quietly exists here, there, and everywhere:
Assuming you could convert a 1 kilogram rock entirely into energy, how much energy would be released? This is a relatively simple problem. Using Einstein's formula...  
E = 1 kg x (300,000,000 m/s)ˆ2
Using your scientific calculator (or you can just trust us) that is 90,000,000,000,000,000 joules. This is roughly enough energy to power all cars in the US for a week!
So yeah, I guess that's why when they split a uranium atom (which has like a kajillion electrons and protons) it creates such a massive reaction. All that idle energy dancing around in harmony gets disrupted and suddenly erupts. A nuclear explosion. Energy erupts. Remember that.

Time.

Time is also a funny thing. While there's great debate about whether time even exists, we're definitely bound by it in our lives. We live right now. Moment after moment fades into the past. And who knows what the future will bring. But we live right now.

We're bound by now. We're bound by time. All living organisms are. But what's funny is that we're the only organism (on this planet) that contemplates the deeper mysteries of time. Even more, maybe we're the only organism that wonders what the future will bring, and the only one that reflects on times gone by.

I always think of this when I see dogs wearing those lampshades on their heads. They can't foresee or anticipate the future consequences of what their biting and gnawing will do to their healing wound. But we can. So we put lampshades on their heads to prevent them from doing it. It's really a wonderful and amazing ability we have. It makes me smile every time I see a dog wearing a lampshade.

At the end of the day, language allows us to do the above (or our brains do, if you want to get nit-picky). Language allows us to share our experiences. Our thoughts. Our feelings. You can tell your friend what you did yesterday, with words. You can tell your friend how you felt about yesterday, with words. You can tell your friend what you're going to do tomorrow and you're feelings about it, with words.

Could you imagine the dog with the lampshade doing that? Telling his neighborhood dog friends what the man with the knife did to him the day before? And how different he feels with some of his parts missing? How it feels like a part of him is gone? And how difficult it's going to be to come to grips with his new reality? With his new body? With his new identity? Or how he just feels "flat" ... like something more than his parts are missing? Like there's nothing really to get excited about anymore? And how - for some weird reason - he now has patience to listen to what the female dogs on the block are trying to talk to him about? How they actually have feelings, and just want to be listened to, instead of impatiently jumped on? And how they don't like being called "bitches!?" And how he panics and catches himself and shrieks to his friends, "Like what's going on guys?!" And then he worries about whether Buster and Spike will still want to hang out with him, or whether they'll start teasing him?!

But that's just the miracle of the last paragraph. If you laughed or smiled it's because you saw that conversation going on in your mind. That totally absurd silly conversation existed in your mind. It was real. Just as the lemon in this exercise is sort of real (for most of us, if you do the exercise right).

What that means, though, is that more than right now can really exist in our minds. The past, present, and future can exist in our minds. So can someone else's past, present, and future. So can anything, really.

Not only can our minds transcend time, but our minds can transcend us.

That's how we're different. That's how we're human. It's amazing, really.

Tears.

(Let me just say that I'm speaking metaphorically here, not scientifically.)

So we all know that energy is both positive and negative. It's both, always, and at the same time.

I believe love is the human form of the positive energy force, just as I believe hate is the human form of the negative energy force. Love breaths life into things. Hate sucks life out of things.

Energy is free. It's free from time. It's free from space. It flows.

We're not. We're bound by time (i.e right now). We're bound by space (i.e. our bodies).

So what are tears?

Like I said, I've never cried more in my life. And a part of me is embarrassed that this blog has made several people cry too (like are Buster and Spike gonna want to hang out with me any more?) But the tears come quick, and they come often. Why?

I think it's funny that "the function or origin of emotional tears remains open." It's seems so obvious to me now.

I think our "emotional" tears are rushes of energy. I think our ability to exist things in our minds – things that aren't right now – overwhelms our "carrying capacity" ... and we cry.

We cry when say goodbye to a family member we know we won't see for a long time. We're not crying because they're walking or driving away. We cry because all the memories and feelings we've had with them, and all the memories we know we're not going to have with them, all of which are positively charged with love, come rushing into our hearts and minds in that very moment. Our mortal bodies that exist in the "right now" have to deal with this rush, this release of energy, like an atom splitting, there's a reaction.

And we shed tears.

The same thing happens to new parents when they meet their brand new baby for the first time. It's not the baby that makes them cry. It's the entire lifetime of forthcoming events that comes rushing into the very moment that makes new parents cry. Like an atom splitting, there's a reaction, and we shed tears.

So I guess I think of tears really differently now. They're really amazing sometimes.

Sometimes the thought of my little girl's short life - from the start to the end, with all its highs and lows - fills me up with tears. Sometimes her smile makes think about what life's going to be like without her one day, and that fills me up with tears. And sometimes when I'm cuddling her, I think about how incomplete my life would be if she were never born, and that fills me up with tears. The past, the future, and the hypothetical come rushing into the moment. I'm overwhelmed with love. With energy. With tears.

It makes perfect sense to me that "no other animals are thought to produce tears in emotional states" (link). And while I run the risk of losing my status with the Busters and Spikes of the world, I think it's worth saying:

Tears are beautiful.

Tears are magical if you view them in this way. Maybe that's what "emotional tears" are ... the physical response to our ability to transcend time and space. Maybe tears bring moments from the past and moments from the future into the present moment, freeing us from time and space. Maybe tears are what happen to us when we tap into the infinite amounts positive energy everywhere and all around us. To infinite love.

Sometimes I think tears are okay.

Sometimes I think tears are beautiful.

Tuesday, May 24, 2011

Exceptional

You can expect competence.

You can anticipate goodness.

But you just can't presume exceptional is going to be the norm.

Whether it's a friend, family member, colleague, server, teacher, doctor, accountant, receptionist, cashier, nurse, neighbor, or custodian – as soon as you expect everyone to be as incredible as the one superstar who is the exception to the rule, you're miserable.

I've definitely learned since Gabrielle was born, from medical staff to friends and family, to fully and wholly appreciate the people who are special and incredible ...

The people who are especially and incredibly competent ...

And learning to appreciate their exceptionality, instead of focusing on how others aren't like them, has been one of the wonderful lessons I've picked up through this.

The next time someone does something exceptional for you, let them know how much you appreciate it. It'll make their day and remind them that their extra efforts are not going unnoticed.

For what it's worth.

Monday, May 23, 2011

Day+60, Day+61

View from roof of BC Children's Hospital
It's been 2 1/2 months (73 days) since we first started at BCCH.  We have needed all the resources that the hospital has had to offer to Gabrielle to help her get through the rigors of a stem cell transplant.  But, I've had enough, I want her home and I can't help but feel that her home environment would be so much more healing then the hospital to help her in that last little stretch.   Her bright home with fresh ocean air, her own bed, and all the 'life' that comes with 2 lively, loving brothers and people in and out all day.  Contrast that to her dark hospital room with no window to the outside, lit only with fluorescent lighting.   I can't help but think how much your environment helps you when you're trying to heal. 

What a journey. March 11th she had her line inserted and recovered for the weekend and the nurses,  and doctors were very much needed.  Monday, March 13th was the first day of her chemo, and again, the hospital, the nurses, the doctors, were absolutely necessary.

Those first 10 days Gabrielle was very sick.  So sick in fact that I wouldn't ever take my eyes off of her.  I was scared.  I slept literally with one eye open and jumped up so fast any time I heard the machines alarming or beeping, or heard the nurses coming into the room.  I was so edgy and not at all relaxed.  I think for those first 10 days, we barely slept when we were with her.  I even remember thinking when she was having her episodes of seizures that it was worth it to stay up all night if it meant that she would be safe.  I didn't even question my own needs, you just don't when you're a parent and especially when your baby is sick.

March 23rd Gabrielle was transplanted and we got to see science and modern medicine at it's finest.  I couldn't talk while the doctor was transplanting her.  I held her hand.  I cried.  I laughed.  But I wouldn't take my eyes off her.  I hoped for a new beginning and a better chance at life.  I stayed with Gabrielle that night and, again, I couldn't sleep and I wouldn't sleep.  The alarms and the beeps kept me so on edge and I was so nervous for Gabrielle.  I had no idea what to expect and I was willing to do anything.

Enjoying some fresh air with Daddy
Since transplant we have gone through a whole series of ups and downs.  We haven't slept much at the hospital.  She is on so many medications and is taking medications to curb the side effects of the medications.  It's crazy.  Gabrielle has needed all of it to keep her going in the right direction, though.  She's needed to be there every single day. She's needed all of the doctors, specialists, x-rays, physiotherapy, and treatments.

Now, I can't help but feeling that she is so close to coming home.  A big part of me wonders if being in a different environment would help her to turn that corner we are waiting for.  She is only on a sniff of oxygen away from being in the clear, and her lungs are improving.

Day + 61 and I just got a call from Regan who woke up with her at Children's this morning. Argh. Her cough has gotten a little worse and they increased her oxygen again.  Please send Gabrielle some healing energy today.  Her family misses her so much and I don't know how much longer my heart can take it.