Wednesday, November 11, 2009


Locations of visitors to this page
It's a great name for a horse.
It's also how I'm feeling right now.
So many things and each moment that comes along to remind me to pay attention feels like a spring loaded trigger with a line attached to it. It tugs at another time, another place, another feeling, bringing it back to the presence with force and speed that only a trigger can.

Sweet new baby girl Jonah. Precious and fragile. Scrappy little spirit.

Children's ICU (NICU or PICU it's relatively the same).

Waiting, not knowing. It's a kind of 'not knowing' that unless you've held your breath with someone else's life in the balance, you can't understand. It sucks. Literally. It feels like there is a vacuum pull, massive like a black hole and you're
keeping your feet firmly planted through only a spiders gossamer thread. Hope. Faith. Humor. People magazine. Whatever it is, it's holding you but you don't know for how long.

I know these feelings so well. They're still present for me although they seem to be standing farther back in the line of feelings and memories as of late.
There are fresher ones that I prefer to be in the front of the line, swimming, first words, first steps taken etc, and even not so pleasant ones that are there fresher than the hell of the ICU. Blood draws, echo cardiograms that show no change, an ER visit for a stomach bug...they're all there. And, those old ones are still there. That absolute devastation that came with the first diagnosis, each setback before discharge, the wondering and decision-making that held the weight of a life.

This trigger thing is so fascinating to feel and watch from a little outside myself. I am alternately right there with our dear friends, feeling on a cellular level some of what they're feeling.'s not my son. We are not in the ICU.
Simon is in his own bed with the lights off babbling to himself as he soothes himself to sleep. There are no alarms going off, no lights that never dim, and no lines attached to him via needles or tubes down his throat (ok ,there's a g-tube and an overnight feed happening but it's not the same). It's a part of him, a part of his past and mine that makes up who we are individually and as a family. But, it's not right now.

My heart feels so heavy right now. With my own memories and love and hope for that little girl Jonah.

And love and hope for my little boy Simon.
We are still connected to that gossamer thread that ends in that black hole. The thread has strengthened over time and now feels more like one of those thick corded ropes that tether ships to port, but it's not that far back that it was spider web thin.

It also thins again at certain times in certain places.

We had to leave 'school' on Tuesday after only being there a short time. Another parent mentioned that his kids are home with the flu and while he's not sick and neither is his son that was with him, those germs are there.

It's so great that he was thinking of Simon in that way. And it sucked so hard that we had to leave just when Simon was getting into the mirror/self awareness activity that was beginning.
I felt that cord thin again with the reminder that Simon has no reserves and while he may look the picture of health (a strikingly beautiful picture of course) he has no reserves because he lives compensating for heart failure and the flu is not an option for us. Not a clear danger. Not a direct exposure. It was my call.
It sucked.

Feeling a fraying thin cord section just there.

So I'm living with the multiplicity of fragility, resilience, unfortunate knowledge, the gift of passing it on to where it might be needed and help, a sweet delicious lovely boy, and an amazing new Jonah girl that is welcomed into this family with tidal waves of love and arms ready to hold both her and her parents as they are just setting out on this road.

I'm exhausted.

That, and we (all three of us) have not gotten our H1N1 vaccinations yet but employees at Goldman Sachs and Citibank have. If I weren't so exhausted I would rant about that. Instead I'll post some pictures.

From Halloween


No, that's not a monkey on my's a Gorilla

Sad Gorilla

Happy Gorilla

Very Happy Gorilla

Simon and Mommy at the Celebration of Life dinner (commemorating Mommy making it through her own near fatal motorcycle accident)


l_r_ said...

Hey there,
I came to your blog via a friend's blog and have been silently cheering you on and saying my agnostic prayers for Simon and your family ever since.

Alameda County is having a second round of free H1N1 flu shot clinics this Saturday. Last weekend my husband and son waited about three hours for their shots in Oakland's Chinatown, but I heard later that the East Oakland site had almost no wait. Lots of people were saving places for their kids so the little ones didn't need to wait in line. Check the Alameda County Dept. of Health site for more info.

Good luck.
- another fan of Simon and your family

Sara said...

We went to the chinatown clinic - it was god awful, but we got vaccinated. If it is an option for you, I would go to the Eads clinic for a shorter wait.