Shoulders, Weight, and Metaphors

Last summer I gave some business advice to one of the contractors working on the Civic Mirror. I couldn't have predicted how much my advice to him would have helped me.  

He was just starting a business, I was contracting his services, and while we were talking about the delays in his work, I heard him sigh several times. Big sighs. Defeated sighs. 

I inquired, "Why the sighs?" and he explained (very honestly) how overwhelmed he felt by everything involved in starting a business. I got it. Oh man could I relate. Like 100%. The challenges involved in growing Action-Ed in my part-time for the 4 years leading up to last summer had consumed all of my energies (not to mention parenthood). It had been anything but easy.

So, being the guy I am, I wanted him to get excited about his business and the work involved. My advice was unsolicited. But I saw his potential and wanted to help. I wanted to reframe things for him. Inspired, I started thinking out loud:

"You know, most of us view work and stress as weight on our shoulders. And we think the weight's bad. We need to get it off in order for things to be better. When the weight's gone we think things will be back to normal, which is good, because that's what we're comfortable carrying.

"But I think the trick is to not focus on the weight, and how it makes our shoulders feel. I think when you embark on this path, the trick is to focus on your legs, and back, and neck, and getting your whole self stronger and stronger.

"I think if you view the weight starting a business brings as good weight – as a force that you can use to make you stronger – then you'll be able to carry it effortlessly. You'll become one of those people who'll continually grow and grow and carry heavier loads.

"Sure there's weight. But if you want to go down this path and enjoy yourself, you can't be viewing the weight as a thing that needs to be avoided. I think the people who do well at this are the people who welcome it. Who say, 'Bring it!'  Really, it's a matter of perspective."

Now for all I know he could have been playing solitaire on his computer while I blathered away. Or maybe he put me on speaker phone and made funny faces to his friends while I talked. He likely hasn't thought of what I said since. I mean, it's not like I'm a millionaire or a magazine-cover-worthy entrepreneur. What do I know?  

But the image I described has stuck with me since. It's helped.

Thinking about how I changed the picture around in my mind's eye has helped me to remember that we are in control. I simply pictured someone with weights on their shoulders and – instead of wanting to get the weights off – I pictured the guy wanting to add more and more weight because he knew they would make his whole body stronger. It's a silly image really. But so are all the images our thoughts make. 

Like what are they, really? 

But by changing the image, I changed the rules. And the different rules created a different reality, for me at least (i.e. welcome responsibility, don't eschew it).

And while I don't mean to say we should all carry as much stress and assume as much responsibility as we possibly can (the Japanese know the end result isn't a good one, to the point that there's funny commercials like this one), 

And while I don't mean to say that Gabrielle's situation is a good one simply because it's an opportunity for Amy and I to grow stronger (because the situation really does suck and we'd rather her be normal and healthy), 

What I am saying is that my advice to the contractor has since reminded me that our thoughts and 'mental metaphors' can have wonderful and devastating effects ... depending on what they are and what realities they make. 

I guess I'm writing this because lately quite a few people have asked us "How do you do it?" It's kind of a weird question because ... well ... if the tables were turned, you'd just do it too.

But maybe we're "doing it" because we're aware of the metaphors we use on a day-to-day basis. We know how slippery the slope can be. Thoughts attract like thoughts. For example, if we referred to the day Gabrielle was diagnosed with I-Cell disease as "the day the world came crashing down," ... well ... what kind of reality would that create? Yeah, exactly: a sucky one. 

We're doing our best to pick our words and metaphors very, very carefully. 

We know they'll make worlds of difference.

Firetrucks and Rocks

No matter how elaborate your plans,

Or how much you prepare and anticipate,

And no matter how well you think you know someone,

Or what they'll like,

Sometimes we forget that it's just the simple, little things that matter.

Take, for example, Uncle Regan showing 4 little boys Uncle Ryan's greatest show on earth:

Day plus 31 - Update

A quick update...

I really can't believe we've been in the hospital for 44 days today.  The great news is that Gabrielle is feeling much better.  She's talking again, she's smiling and playing with her toys and very interactive with the nurses, doctors and of course us.  Her blood counts are still coming up and as of today her WBC count was 3.7 (5.3-16 normal) and her ANC's were 1.18 (1-8.5 normal)!  YES Gabrielle!!  Her hemoglobin counts were low yesterday so they gave her another blood transfusion but that was the first blood transfusion in 10 days.  This morning she also had another platelet transfusion but until today she managed to hold her platelets on her own for a whole week!  What a star!

The transfusions combined with all her medications do make her uncomfortable - nausea?  Allergic reaction to the blood products?  It seems to be a guessing game with babies, but we make sure to give her benadryl and gravol to keep her comfortable.  She does show symptoms of HVG (host versus graft disease) with a rash, vomiting, red face and puffiness.

Gabrielle is still hooked up to oxygen, has her feeding tube and she is still working to clear her lungs.  We have a physiotherapist who comes every day to do some strengthening exercises and she also helps her to cough and clear her lungs (she gets paid to suction boogers!).

I love that she is doing so well.  We no longer have to sleep with one eye open jumping at any gagging, or vomiting.  She is finally sleeping well at night and only wakes up at 4am when the nurses come in to do vitals but I don't mind because I get to pull her into bed with me and she sleeps like a log:)

Highlights of the past few days...

1.  Thanks to the combined efforts of my beautiful sister and parents, Regan and I got to have dinner at home together with the boys for the first time since March 11th!  My parents came to the hospital in the afternoon and sent me home, and Julie came in the evening and stayed the night with Gabrielle in the hospital.  It was so nice for Regan and I to be able to spend some time at home together with the boys.

2.  Today, nurse Kary, hep-locked Gabrielle, took her off her oxygen, unplugged her feeding tube and we were FREE!!!  Gabrielle and I spent a part of the afternoon outside on the terrace together soaking up the sun.  It was magical.

We continue to be so grateful for the amazing nurses, doctors, physiotherapists, music therapists, and social workers at the hospital who help all of us adjust to life here, and who do everything possible to make sure our sweet Gabrielle gets through this procedure.

We are also grateful for all the love and support we've received from everyone.  From cute pictures from cousins; to gift certificates and meals from family, friends, colleagues and parents of former students; and to everyone whose reached out to us with nothing but love and support, thank you with all my heart.

What a journey this has been.  The kids who go through this are unbelievable.  Gabrielle has been our hero every single day and I am amazed at her strength and spirit through this.


Happy Easter everyone!

Amy
xx

Showing Up

I remember reading once how the only other animal species more 'social' than us humans is the K-9 species. When I read that I thought of the movie Cast Away and how Tom Hanks' character's need to be with someone was so great that he turned his volleyball into Wilson. I'm sure there's been thousands of people through the ages who have done similar things.

I don't think it's what we say to one another that really matters, I think it's how our being there makes one another feel. Maybe that's why so many of us have and love our pets. They don't need to say anything. They simply show up. They love us unconditionally. So do babies. So do kids. They love us unconditionally if we show up ... and not necessarily all the time.

Sometimes I think our oft awkward words get in the way of our good intentions.

Writing this makes me think of Never Cry Wolf and the bond Farley Mowat developed with his furry friends. They didn't speak a 'word' to one another, yet bonds were definitely developed. He showed up. Again and again and again with very good intentions. And they took him in. With unlimited positive regard.

I think that's what love and friendship and family is all about. Showing up. With good intentions.

Laughter #3

Reflections

I wrote this today while at the hospital...

 Snuggling Gabrielle close to my heart hearing every little breath she takes. Every other day I hear and see out our window the helicopter flying in as the landing pad is close to our unit. I feel sad and scared as I can imagine the fear for the family who has a child in that helicopter. It reminds me of that terrifying feeling where you lose control and life changes drastically in a split second and all your hopes and dreams halted. I remember the day we were told of Gabrielle's devastating diagnosis so incredibly clearly. I remember the room, where Regan and I were sitting holding on to each other tightly. I remember the Social Worker Grace, the 2 Neonatologists, the team of Metabolic doctors, the nurse, the Biochemical Doctor and some Fellows all sitting in on the meeting. I remember my sobs and my inability to speak, only noises and wails were all I could manage. Regan was my voice as I was crippled with disbelief that my daughter had such a diagnosis. I wanted to shake them all and yell at them and tell them they were all wrong. I wanted them to reasuure me that she would outlive us, but they looked at me with a solemn face and said nothing.  

And here we are 6 months later.

My life is not what i ever dreamed it would be. It's much more beautiful then I ever imagined. It's much more real. Life is not perfect. I'm more human. The pain is indescribable. To have a child with a terminal disease is beyond words. I live with a pain in my heart every single day. It never goes away. I live for my cuddles with Gabrielle and my boys and my husband. I love to watch her breath. I celebrate her smiles, any and all milestones she achieves because that's wonderful. I can't bear the thought of her ever leaving our side so I choose to believe in miracles. It gives me hope. I love smelling her, touching her and I often sit and stare at her. I don't want to ever forget her long curly eyelashes, her little nose, her bumpy head, her tiny liitle ears, her gummy smile that makes me feel electric, her chubby cheeks, blond hair and perfect beautiful soft skin. I take so many movies and pictures of her so that her brothers will have lots of memories of her as a beautiful little baby.  As gut wrenching and heart wrenching as it is, I woudn't want anyone to do this but us. I've said it once and I'll say it as long as I live: my life is so much more meaningful than I ever dreamed it would be. My only hope is that my baby girl doesn't suffer. Thank you Gabrielle for being you.

There Are No Touchdowns

Honestly, as much as Amy and I are learning to enjoy every moment we have with Gabrielle (and our boys), if that's all we did, and we didn't think about and plan for our future ... well ... we wouldn't be much different than your average animal. Our ability as humans to forecast and anticipate is one of our most wonderful qualities.

I think, though, that this ability to think into the future comes with some serious pitfalls. I think that we sometimes get caught up in the belief that one day all this work and routine will result in some absolutely magical moment in our lives when everything's perfect. And I think our society reinforces this.

We work and study hard believing our holidays will make it all worth while. We plan our graduations, weddings, and children's weddings with the belief that event is somehow larger than life. We dream about the day when our kids will leave home and the magical Christmas dinners we'll have. And we contribute to retirement plans with the belief that someday we'll finally be "free!"

In all of these instances, it's as if the future event we're thinking about will be like a game-winning touchdown that will make everything better. Forever and ever.

But [sigh] time marches on. And then the next day comes.

We experience the letdown after high school graduation. The reality of our wedding bills and the honeymoon ending. The day back to work or school after holidays. The loneliness in our house when the kids leave. The reality that retirement isn't as golden as we thought it was, and we're not dancing with our spouse until our final days.

There are no touchdowns. Or are there?

Could every day be a touchdown? Or at least a chance to be one?

Maybe it's like the Zen Buddhists believe: heaven is life on earth, we just got to awaken to it.

Our ability to think about and plan for the future is truly amazing. But sometimes, I think, we need to remind ourselves that we could be enjoying the present moment instead of waiting for that time in the future when we hear a song or smell a smell that longingly reminds us of the moment we're presently in.

It's quite a paradox.

Happy 6 month birthday Gabrielle!!

Sweet Gabrielle,

Happy 6 month birthday!  I showed your brothers this movie tonight of you during you music session and they both had the biggest grins on their faces.  Michael squealed when he saw you and kept calling your name "Gabbielle" over and over.  They miss you so much.

I love that you have taught me to celebrate all occasions in life no matter how big or small.  Life is too short and way too wonderful to take anything for granted.  I am so thankful every day to have you in my life.  Sweet dreams Gabrielle, see you tomorrow.

To My Dying Daughter, Gabrielle

Gabrielle,

One night the sun will set and I won't be alive to see it,

One night the sun will set and you won't be alive to see it.

One night the sun will set and no one will be alive to see it,

Yet the earth will sail around the sun and on and on and on,

Because ...

That's just how things are, and that's just how they'll be,

And it's wonderful that we lived and laughed and knew enough to see,

That on this earth and in this life we all were meant to be.

Love Your Dad.

Looking Past Limits

Thank you Caroline ...

Update Day + 15

Another day almost done and 1 day closer to having Gabrielle back at home.

Today was exciting and nerve-wracking all at the same time.  What's really exciting is that Gabrielle now has some nutrophils in her WBC's.  Her ANC count went from 0 to 0.07 today which means that she is on her way to growing some cells in her bone marrow!  YAY Gabrielle!!!!

Every morning at 4am the nurses do her vitals where they check her blood pressure, temperature, and draw blood through her central line to check her counts.  By 8am the nurse comes back to do vitals again and that's when we get to see where she's at with her counts.  WBC's are the first to come, then her ANC's, then RBC and lastly her platelets.  The ANC's are the part of the WBC's that  fight infection and therefore very important at this stage in the game and her RBC's and platelets have a short life so she usually has transfusions every 2 days.

What's nerve wracking for us right now is that Gabrielle has caught a virus that is creating lots of sticky, white mucus that is filling up her lungs and especially her right lung.  And without having anything to fight the virus, it's obviously a big concern.  **On a side note: the name of the virus Gabrielle has caught is called the Corona virus (aka common cold)?  I thought the doctor was joking when she told me that.

After having experience with Bronchiolitus which put her in the hospital for 10 days, we asked them to treat the symptoms aggressively so as to avoid pneumonia or some kind of bacterial infection.  When it comes to any type of respiratory concern we have learned that we can't 'wait and see' with our sweet Gabrielle.  Last night we started with saline and ventilan nebulizers to help move the mucus and to get her to cough it up and hopefully swallow it or suction it out.  The physiotherapist was awesome and got her really coughing as she moved her through different positions while doing palpitations on her back.  The nurse was waiting with a suction so as she coughed it up the nurse would suction.  Meanwhile, I was wincing as I watched my little baby girl hacking up a lung (literally) and yelling with a high pitched tone 'quick GET IT!".


She continues to amaze me.  She really does and I am the luckiest mommy in the world.  Gabrielle thank you for choosing your daddy and I as your parents.  You are making me so strong and filling me up with so much love it's often overwhelming.

I can't wait to see you in the morning.

Compassion and Community

No one wants to be the focus of community concern. If you are, you're either in big trouble, or something awful's happened to you. For us, it's the latter.

Today's been a little overwhelming. We've received many generous gifts and well wishes from the Laronde Elementary School community (where Amy taught for two years) as well as in the mail. To be honest, I find it amazing that people care so much. Not only have the gifts warmed our hearts, not only will they help us through this hospital marathon, but they remind me that we're not solely guided by self-interest like the homo economicus theorists believe we are. There's more to us than simple self-interest. The image that keeps coming to mind is of the countless stories of dolphins rescuing people washed away in storms and bringing them back to the shore. There's no logical reason why they do it, but they do.

It's overwhelming because there's just so much love and kindness out there, and I don't think any of us are used to it. I think a lot of our unfamiliarity with this aspect of our nature has to do with our inexperience with communities. We've really set up our society here weirdly, if you think about it.  We live in "boxes." We have boxes that we sleep in, work in, shop in, drive around in. There's boxes for pretty much everything, located very far apart from each other, with different people moving here and there, and none really being connected to one another in any meaningful way.

It's overwhelming because most of us don't know what real community is. We live in networks. We have work networks, family networks, recreation networks, kids activities networks, fun networks, etc.  None of us really share the same community.

It's overwhelming because we don't "commune" ... and therefore, we don't experience what it's like to be connected to so many people. And I'll tell you, being the recipient of so many gifts and gestures of sincere compassion and concern is wonderfully overwhelming. Developing so many meaningful connections with people – because of Gabrielle – is overwhelming in the most incredible way. No one wants to be here, and in most moments you feel all alone, but days like these make you feel a part of something more than a mish-mash of random networks.

Thank you everyone. We appreciate it more than you know.

From one I-cell family to another

I am dedicating this post to a little 3 old boy in our I-cell family named Ethan.  My heart was so heavy when I found out that little Ethan passed away early in the morning on April 2nd.   He lost the battle with a nasty virus and died peacefully in the arms of his mom and dad.
The only comfort I can find is knowing that Ethan is now free of this dreadful disease and is running, jumping, dancing, talking and laughing wherever he is.  I know he has touched so many lives with his beautiful smile and taught many people many valuable lessons that they otherwise would have never learned had it not been for Ethan.  Ethan you will be missed greatly.  Tara, Scott, and baby sister Emma we are thinking of you all with much love.

Fondly,
Regan, Amy, James, Michael and Gabrielle

sleepovers and music

Day + 8 and Gabrielle is doing 'amazingly well' according to the doctor.  All of her symptoms from the chemo and low white blood cell counts are all very typical and are being managed by the nurses and doctors.  We are keeping our fingers crossed that no random infections occur, or mucositis, and now as we wait for her counts to come up, I hope with all my heart that no chronic rejection takes place with her immune system rejecting the new cells growing in her body.  It is hard to really relax about it all, but I make the most of saying 'she's having a good day' and try not to get too excited as we still have a long way to go.

Gabrielle had 2 music therapy classes this week and she loved them!  I missed the first one on Tuesday, but I got to be with her for her second one.  Erin, the music therapist brought her guitar and two shakers for Gabrielle.  Erin was amazing as her voice and guitar injected the room with so much energy and life; I couldn't help but cry.  Gabrielle was so interactive and loved shaking her little rattle, cooed and smiled the whole session.  I can't wait for next week's session.

Gabrielle also had a sleepover with her Auntie Julie and was so excited she decided to stay up nice and late and wake up real early to spend as much time with her Auntie.  Julie sent me an email with the funniest picture of Gabrielle.  Her email read: "Hi!!!  Miss everyone but we're having lots of fun without you! xoxo"

The two of them were fast asleep when I got back to the hospital in the early afternoon.  So cute - thank goodness I had a coffee for Julie to wake her up!  It was so nice for Regan and I because we got to actually see each other and we even got to be in the house together at the same time.  You should have seen the look on James's face when he woke up in the morning and saw both of us drinking a cup of coffee together in the living room!  Too funny.  It's hard to believe it's been 3 weeks that my sweet Gabrielle has been in the hospital.  I can't wait to have her home and to have my family all in the same house.