Thursday, September 16, 2010

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

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