Saturday, November 14, 2009


Locations of visitors to this pageThank you all so much for the Vaccine clinic info. Simon actually got his 1st part shot on Thursday and both Jaime and I got ours today.

Guess we're as worthy as those big wigs on Wall Street.

Simon's had a runny nose since Thursday night and mine's just starting to kick in. Fun times.

Shimmy seems to be moving at light speed in terms of working out new words and sounds. In the last few days we've heard new babbling and a distinct "Hi" and "Bye" being used at the correct times. There's also a clearer "baby" and "ball" happening not to mention more than a hint of "Mama" and "Mommy". Delayed shmelayed. He's a genius, the next Stephen Hawking, Lance Armstrong, and Jackson Pollock in the making- minus the wheelchair, testicular cancer, and alcoholism.

Jaime and I are just trying to keep up with the lack of sleep and craziness of life in general.

I love him so much it's impossible to explain.

And thank you all for the love and well wishes for our dear friends and their little baby girl. Looks like you all have worked your magic again (not to mention she's kicking some life force ass) because little Jonah girl is on the 'well baby' list and will hopefully be coming home in a few days. All systems are a go.
Thank you all for love. It's a powerful thing.

Wednesday, November 11, 2009


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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)

Monday, November 9, 2009

Deja Vu

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We're having a terrible sense of deja vu. Very close friends have a newborn in critical condition at Children's Hospital Oakland (CHO) and we're having flashbacks right and left as we gladly support them.

One of our dearest sets of friends welcomed their almost 9 pound daughter, Jonah, early on Saturday morning. The labor all seemed to be going well and the baby seemed fine until the very end of delivery. It then became apparent that the baby had pooped in utero and breathed in the poop, completely filling her lungs. This meant that she couldn't exchange any oxygen for quite a while after she was born. The team got her lungs cleaned out and got her on a ventilator right away but quickly determined that there was brain damage and that her body was having a really, really hard time. They needed to take the baby to Children's Hospital Oakland right away.

Our friend's husband called us at 3:30 a.m. to tell me that his wife was okay but that the baby was not and asked me to be with his wife in the hospital so he could go with the baby to CHO. I immediately jumped out of bed and then stopped, trying to think about all the things I knew one needed when going to the hospital. It was frightening how easily the list came to mind.

Shortly after I got to the labor room, the transport team brought Jonah by so our friends could see her before she got taken to Children's. She was big and beautiful and had lots of dark curly hair. And looked eerily like Simon with her equipment and ventilator and team of people around her. My friends said their good-byes to each other and then I crawled in bed with the Mama, snuggling her, petting her head and just listening. We cycled through the now familiar pattern of conversation that plays right after something really traumatic happens from "everything's going to be okay" to "what the hell is going on" to despair to chit chat and back to sobbing. I just tried to ride it with her, knowing that we would just keep switching gears until we slept.

Once day broke, I started making phone calls, mobilizing the cells we already had in place both from when Simon was in the hospital and from the ones they'd set up before Jonah's birth. Our dear friends are so used to these kinds of calls, between Simon's illness, Laura's gall bladder surgery, two cancer scares with folks in our circles that by now that everyone just suits up and gets to work without much discussion. It's awe-inspiring and heart-breaking.

By mid-morning, we had someone else with Mama and I went home to hang with Simon so Laura so she could go to CHO to be with Dad. She worked her magic there, getting them set up with long term ID badges, long term parking passes, tips and tricks for schmoozing nurses, what to eat in the cafeteria, etc. She ran into a few of our docs who were shocked to see her there and then relieved to hear that Simon was okay. We're making sure everyone in CHO who meets our friends knows "they're with us". I put out an APB to all the nurses I'm friends with on Facebook and asked them to look out for our friends and kick the asses of any nurses who gave them a hard time.

I keep reminding myself and Laura that this is not actually happening to us. It is, in the sense that we are so close to this other family, but for once it's not our kid fighting for their life. Not our kid that everyone is thinking of and focused on and worried about. It's such a goddamn relief. And it's so triggering to be doing this again.

We both slipped into the mindset we had in the hospital and are trying to translate for them so that they can have the tools we had to forge ourselves. We both feel heavy with the intensity of what is happening. At one point I said to Laura, "We're the elders now". I truly feel like an adult now, leading these new parents, blinking and stumbling in the harsh light of trauma, through the minefields we escaped almost a year ago. It is such a curse and such a blessing to have this esoteric set of knowledge we've gathered- essentially how to survive in an ICU, how to thrive in the face of parenting a critically ill child.

Early that first morning my friend kept saying, "how do I do this?" and i just kept saying, "you already are". We talked about how we can't really protect our children, we can't stop the hurts and it's scary. I had to remind her that there's a lot we can do: we can warn them when an owie is coming, we can hold them or touch them when they're upset, we can just show them that we're there and teach them how to be resilient, to keep going when things are really really hard and sometimes even have a good time in the midst of hell. We are magnificent creatures who can thrive against all odds. Simon is living proof and he's going to show his cousin Jonah how it's done.

The latest update is that Jonah is steadily trucking on the right path and may be off the ventilator and off the brain treatment regiment tomorrow. Itty bitty baby steps is how we do it. With a crazy ton of love, too.

P.S. Simon is 19 months old today!