Thursday, September 16, 2010

Can you Canoe?

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I watched this video this morning. I had posted it to my facebook without even watching it and figured (as Simon and are getting ready to leave for 'school') that I should probably watch it.

It was like someone had taken a fist, and like you might bang it down on a table to make a point, struck me center in the chest.

The ominous music, the staggering stats, the awful prognosis...that's Simon. That's a truth of living with Cardiomyopathy.

It's not our day-to-day and doesn't at all speak to the oh-so-rich quality of life this boy has....not at all really. But... it is a truth we live with and sometimes it just comes to bite me in the ass.

So I watch it. And we're out the door a minute later.
I can feel the video still sitting like a lump. We arrive at school.  We sing, we play, we have snack and Simon is completely oblivious to the fact that Mommy is on the edge of losing it.

I keep looking at him so happy and vibrant....with an estimated five-year survival rate of 40-50%.

My head is swimming. Finally it's parent group time and I can sit in a room with other parents that 'get it'.

And here comes the latest analogy from my days of being a white-water canoeist.

 9:15- 11:00 The river that's been dammed up for about two hours is about to be released.

The river that's often running smooth with a good current and the occasional class 1 or 2 rapid has turned a bend and I find that I am all of a sudden part of a much larger waterway with a dam release scheduled where I wasn't expecting one. Where I can usually map out the route, noticing the large pillows and eddies where I might need to maneuver one way or the other, I all of a sudden feel the current pick up and am swept away at a speed which is both unchosen and dangerous. I want to slow down and go back to the mostly predictable paddling of before. I know there are holes and sweepers but I'm travelling at a pace that I'm comfortable with, in addition to having some spectacular scenery to delight in. The adrenaline is there for sure but there's very little chance of becoming overwhelmed.

That video makes me feel overwhelmed.

Simon lives with a serious heart condition.  I can't ever forget that. Tube feedings and medications don't ever let that happen. But that's very different that being confronted with mortality rates. I felt like I couldn't catch my breath (ironic comment here) and that it was too much. Too much to think about, to much to live with, too much as a parent to have to hold the possibility of my child's death so frikkin' close all the time.

It was a good to cry, a good reopening of that room that I don't live in but always know is a part of my 'home'. A fitting way to start off the Holy of Holies. Tomorrow at sundown begins Yom Kippur. A time when I believe the veil between the material world and the spirit is thin. A fine time to feel raw and in touch with that which is larger than myself. I'll leave the door to that room open for right now; let in some air and light.

Hopefully on Sunday, I'll be able to close it again, and as the door shuts with a gentle click, I will pick up my paddle and continue on down the river.


emily ramsey-north said...

oh, bless you all. and laura, i know from experience that you can take surprise rapids and make them into an unforgettably beautiful experience. it always seemed to me like you live your life that way, and i'm sure you won't be stopping now. you never know what will be around the bend on sh#t creek, but you've got all the paddles you need. what a lucky boy to have such loving moms. you will all be in my thoughts.
-with love, from a grown-up kid who learned how to canoe from you!

Sandi Johnson said...

Laura, I am so impressed and inspired by you every day. I know hearing that doesn't help with the canoe or the rapids or the general shit storm, but I think of the three of you often and with every video and picture you post of smart, funny, happy, loving Simon, I am overwhelmed by the wonderful parenting job you're doing in the midst of such an uncertain situation. Much love.

Ali G said...

Thanks for writing this blog. I saw the news article about it and have started reading. Your blog makes me hopeful that in spite of the obstacles maybe I can build a life with the person I love someday.
Thanks again for sharing,
Ali from Cairo

laurelpaley said...

Simon Lev is on my mi-sheberach list, always. I keep him, and you two moms, in mind and heart. This may not be of much comfort, but at least it is what's so.

I wish you, your family and families, your communities, your doctors and caregivers, the people who are doing research on his condition, and anyone and everyone in his and your worlds love, wisdom, grace, and joy in this new year.