Tuesday, February 8, 2011

Good Grief

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I don't often drive westbound on Hwy 24 because my regular driving doesn't take me that way. I don't avoid it and certainly have driven it more than a couple of times since that fateful turn around almost 2.5 years ago. That's the route where my Dad and I were coming home from lunch with Jaime, on our way to baby swim class, where I first heard Simon wheeze and decided that it would be best not to put off going to the pediatrician (back in Walnut Creek).

That's where it all started, the exit for Telegraph Avenue off of Hwy 24 (then ER, chest x-ray, life changing diagnosis, ICU, etc etc). One turn around and my life is changed forever.

Today I ended up driving down Hwy 24 as Simon needed just a few more minutes to fall asleep for his afternoon nap. It's a gorgeous day here in Oakland, not a cloud in the sky, with temperatures in the low 60's (sorry rest of the country).

And there it was. That feeling I get each time I drive down that stretch of road. It's like the air is buzzing and I feel time is layered around me (like a nice seven layer cake from the Raleigh hotel where my dad used to sing the High Holidays). It's all right there in front of me, the time before, the time now, the moment of change.

I hate it. I hate Cardiomyopathy. I hate that as I was driving, I was also keenly aware that my son was hooked up to his feeding tube, a larger than normal heart beating in his chest, getting ready to go home and take one of his 16 daily doses of various medications.

I hate the feeling of not knowing if he will be one of those kids that improves until his heart is in the normal function and size range only to decompensate at some point and need a transplant OR if he will be one of those kids that lives with medications and some decreased activity level for the rest of his life but no major change from how he has been since becoming stable.

(Less so these days but still) I wonder if Simon will die.

I can't help myself.

Especially when I find myself right back there at the spot where it all began. Where I first had the very real thought 'I wonder if Simon will die'.

Then, and here comes the feel good part, I thought about how much I love my life.


Right?! I know.

But there it was. Now I don't want you to think that I wouldn't trade it all in for a minute if there was that choice. No cardiomyopathy for Simon OR love your life right now...derrrr, no contest.

But for that time and even a little time since then, I'm feeling all the good things outweigh the sucky.

I love that my family can spend the day together sick, noses running like Niagara, and still laugh it up. I love that we have family and friends that bring us so much joy (and sushi!). I love that my son spends most of his time being a stellar toddler, smiling, making jokes, and charming the pants off the world at large. I love that I have Jaime at my side to share all this with. Almost nine (very uneventful *) years together and I am still 100% sure that she is the perfect partner for me.
* Italics = intense sarcasm

We have enough. We have more than enough. We rock!

I miss things for sure but I'm feeling a little in touch with the divine right now.

Sure, I can hear the laundry machine is almost done with the first of three loads that I have to do (barfing has not really ceased yet) and a napping Simon is still attached to tube coming out of his stomach for medication administration, but I am more than content. I'm blessed.

PopPop Simon Laura
 Why PopPop is called PopPop
 Just Chillaxin'
 Happy Monkey

 Simon discovers Mud puddles

 Where my homeys at?
 Ready to follow the Dead
 First Super Bowl
 So Pretty (he's going to kill us)
 No really, he's going to kill us someday
 Cousin Moses
 The only motorcycle he will ever ride
 Can you see why Wyatt might be a little nervous?