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.

Days of Awe

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Last Wednesday night began the Rosh Hashana or the Jewish new year. It also marks what known as the Days of Awe. That time between the starting of the near year and the holy of holies, Yom Kippur. It's also known as the day of Atonement but I choose to mark it in other ways besides atoning. It is about marking a beginning with intention, purity, and grace. Looking both forward and back with clarity. Feeling rooted and leaving what needs to be left behind. It's less about sins and atonement as my rabbis would have had me believe.

Don't get me started.

The point is that here at the Fitch-Jenett household the Days of Awe actually started almost a week earlier and I am still trying to take it all in.

And I feel a little overwhelmed.

Numbers. Left ventricles. Reserves. Coming winters. Appointments or lack thereof. Cross country trips. High Holy Days. Services.

Simon seems to be doing so well. His cardiology visit was amazing and his BNP coming back so low. What does it all mean? Inquiring minds want to know.

Truth is....there are so many truths and some are easily understood and some remain complex and contradictory.

Simon's heart is getting stronger. His numbers and echo cardiogram tell us that. It's a great place to be right now and certainly as we head into another winter. It's also a great place to be given where we've come from (August 08' through November '08 posts attest to this) and it's a great place to be given where we think we're going- Simon will be turning 3 this year and aging out of his early intervention program. This means that we need to think about a regular pre-school for him.

It also doesn't mean anything. Nothing at all.

I can hear the brows furrowing and quiet "huh?"'s

Simon's heart is getting stronger AND it's a muscle that has been severely damaged. It may get back to working well enough but will remain a muscle that went through some significant trauma and may or may not be susceptible to future trauma in ways in which we cannot prepare for or identify.  For example, there are kids that are on our cardiomyopathy listserve whose heart function was in the normal range for years. They were categorized as having "resolved" cardiomyopathy and then for whatever reason, their hearts began to "fail" again and even got to the point of needing transplants.

It just means that we don't ever get to say "he's cured" or "Whew, than goodness we're be done with that" or "glad that's over".

Nope (as Simon likes to say with a very pronounced 'p').

We will live with this disease for the rest of our lives. AND, we will celebrate the strengthening and thickening, pray for continued improvement, and give thanks for each day that we laugh and learn and live.
We will breathe through, cry out, shy away, risk take, stumble on, clean up, get messy, feel fear, be frustrated and continue on. With hope each year for G'mar chatima tova, that our names will be sealed in the book of life.

In the meantime, here are photos of Simon over the last few weeks, including his first trip to the Monterey Bay Aquarium. It was awesome.

Getting ready for the return to the Mother ship

I crack myself up

And then we headed south to the Monterey Bay Aquarium

"Oh my Gosh Fish!"- this is actually what he was saying over and over.

High five-ing

Touching Rays

Sea Cucumbers are slimy!


Jelly's are cool!


Coral is colorful!

It is one of the greatest things when Simon says "Anemone"

"So I came out of a giant clam right?"

Mama Angelfish

Mamaw SeaHorse


Mamaw says "ride em' cowboy"

Snoozing on a waterbed