Blessed

Definition: "of or enjoying happiness; specifically the bliss of God."

If I'm coming from the belief that god is love AND the feeling of deep connection between myself and that which is around me at any given moment- a person, a group, a place, a moment, then great green gobs, I am blessed.

For those of you prone to doing the "poo poo" when either anything too good or too bad is said....start collecting your saliva cuz here it comes.

Let's recap

Simon has cardiomyopathy.

He spent four months of his life living in the ICU with regular blood draws, IV placements, life threatening infections, and a couple of surgeries.

Simon stabilized and now lives in a constant state of decreased heart function.

As a result he is immuno-compromised.

He doesn't eat by mouth and has a tube sticking out of his stomach.

He takes 8 medications every day. Most twice a day, a couple once a day and two three times a day.

He has chronic reflux and vomits several times a day (so much better than it's been but still there)

He hasn't been able until recently to be around groups his own age.

He is 'globally delayed' in walking, eating, talking, and problem solving.

Simon has four different Dr's that he sees, therapy appointments, and an early intervention program that we attend regularly but sometimes have to leave because of his immuno-compromised state.

There is no clear plan for Simon's future as it relates to his health.

We live on one income because of this. One income that decreased by about 30% after Jaime had to switch jobs.

That's all true. Fact.

I know you've read this before. It's just one of those things that every once in a while Jaime and I have to put down all at once. It helps in some way. Especially when we're doing a compare and contrast.

This morning I woke up feeling the contrast so profoundly. I was feeling it from the other side though and it felt so great.

Here's the other side:

Simon is a love!

He now gives kisses on request.

He hugs.

His laugh is 100x more infectious than the swine flu.

He has started mimicking words at an astonishing rate.

He is putting more and more food to his mouth on his own.

We have sweet, sweet morning time in bed with all three (plus pup) of us.

I have a partner that I can bump heads with throughout the day and then fall into bed laughing and being as close as possible with in the best way. ;-).

We have family that supports us with weekly babysitting and respite care.

We have family that give us specific praise and affirmation regularly for all that we are doing and how we are doing it.

We have family that call daily to check in, distract, listen, and ask what we need.

We've been gifted with both a Peete's and a Starbucks gift card by them.

They give us $$ every month to fill in the gaps.

We have time to sit with friends, eat good food, watch a movie, and have loving conversation.

We have friends that call a little more than they expect to be called and it's not a big deal.

We have two working cars, one that's completely paid off.

Aside from some colds and the occasional gall bladder removal, we have no other major health issues.

Glee is on TV and we have a dvr.

There is a farmers market right outside our house every Saturday where we can sit on a blanket and have wonderful people come and be with us.

Did I mention that Simon has started giving kisses on the mouth? Most delicious.

We have an exceptional team of medical professionals, non-traditional medical professionals (Homeopathy, cranio-sacral, reflexology), and OT and PT folks holding Simon in their vast knowledgeable thoughts.

We have amazing aunties and god-mothers that 'hand me down' clothing and toys from their very well stocked closets. ( I do admit that french baby clothes are the bomb!)

Simon is thriving and hasn't been readmitted to the hospital in over a year (not counting his G-tube placement).

His heart has slowly but surely improved.

We have swimming and school and mostly great nap days.

We have visiting Fitchs and Dipanes coming our way.

We have holidays with Jenetts coming up.

The latter two are both things that are wholly sweet and wonderful (aka I really love my family).

We are, in a word, blessed.

All right, it's the next day and Simon is pretending it's a no-nap day. My back hurts, and it's frickin' cold.

Still....

Somebody looks good in orange

No, I mean really good

The chin grab is new. I'm thinking it means that he's either going to be a Rabbi or Hip Hop B-boy

Here's cousin Talia getting one of those aforementioned kisses. Too sweet!

Chatterbox

Simon is finally over his cold and man, is he back in the saddle! He started feeling much better just after Thanksgiving and sleeping through the night again which couldn't come soon enough for Laura and I. The mucus from his cold was disrupting his stomach so much that he was waking up every 2 hours or so for the 10 days prior. I thought we might lose our minds.
However, he's now sleeping through the night *when* he finally falls asleep.

Fri and Sat night, he stayed up until 11, after being put in bed at 8, babbling, giggling and generally being insanely cute. And awake. Friday night Laura and I finally got into bed around 10:30 and all seemed pretty quiet. A few minutes later, we heard "eeeee eeee eeee! Oooooh oooooo oooooh! Whooooo WHooooo". As he was trying to get himself to sleep, Simon started running through all his animal noises. I thought I was going to die trying to stifle my laughter so we didn't rile him up with our hysterics. He finally, finally fell asleep after reenacting the Jungle Book.

Then Saturday night, at 10:30 pm, he's still awake, and standing up in his crib, babbling at us. We have a low night light on and I stand up next to him to ask him to lie down. He starts up with his newest trick which is to "whoooo whooooo" at me and pull at my shirt until I turn my back to him, pull my shirt up and show him the owl tattoo on my back. It was dark and I wanted him to go to sleep, so I resisted. For about 2 seconds. He started to wind up with a screech, so I turned the light a little, flashed the owl (2 x since once evidently wasn't enough), let him kiss it and then told him the owl was going to sleep and that he should too. It seemed to work and again, I collapsed into bed in muffled hysterical laughter.


The kid is a frickin character. He's working on new words all the time. He can say "bye bye" clear as day and is working on MM (Laura's Mom), Pop Pop (Laura's Dad), Mamaw (my Mom), lemon, rain, blue, open, again, bed, and probably a few more I can't remember.


He still refuses to try Mama or Mommy. However, when Laura says, "who's that?" and points to me, he responds "whoooo whooooo". Maybe I'll be Mama Whoo Whoo. Sounds like I'm a Ma'dam doesn't it? Mama Whoo Whoo and her working girls. Jeez.

A moment

Our heads are bowed and our hearts are celebrating and grieving the life and the loss of little Evan.
Seven years with cardiomyopathy.
Send love out to his family.

Celebrate each moment. I know Scott and Penni did with Evan.

We do our best don't we?

One step. Then another.

Love someone or something right now.

Go.

Do it.

I am so thank full.

2 Legit, 2 Legit to Quit

How could I resist an Mc Hammer shout out on a day like today!!

Today is an auspicous day. There's a lot going.


One year ago today Simon was discharged from Children's Hospital after 4 months in the ICU. We have only been back once for an elected surgery (his G-tube) and once for an ER visit due to dehydration (where thankfully we were NOT admitted).

His heart funciton has improved AND we've had no reason to return save for the occasional "Hi" to our nurses on outpatient visiting days. One year ago. 12 full months. So much has happened. Swimming, crawling, school. Trips to the beach, Mendocino county, L.A., Sushi dinners, dog walks, Grandparent time, Auntie time. Babies have been born, babies on the way. Meds have been refilled, enteral feeding pumps have been replaced. Another cycle. Another return. It's all likely to come around again. And again.


And yet things are different and ever changing.


Today is a marker too.


Today, for the first time ever, the federal government recognizes Jaime as a full parent to Simon. Today the federal governement catches up and recognizes the three of us as a family. It may not recognize Jaime and I as a couple but hot damn, today it at least recognizes the two of us as full and equal partners in parenting Simon.


It's a mostly wonderful moment. I'd say 15%-85%. 15% ridiculous and offensive that Jaime even has to go through the process of adopting her own son that she and I conceived (not literally) of together, were married before he even arrived, and she has mothered since the moment he came into being.


85% wonderfull that there's no where we can't go now that won't recognize her as a full parent. It's not just us and our amazing community. Jaime is Simon's Mama. Always has been. That's not in question or even in celebration. It's the simple relief that there's no one that can take that away now.


Ecchhh, the more I'm writing the more I'm thinking that it's so stupid that we even have to go through this. Now I'm even feeling angry that some judge (nice and lovely man that he was) get's to hand down some decree that get's stamped on a thin piece of tree that says there is this bond between Jaime and Simon. That's BS. Ooooh I'm too angry to keep typing. What a wonderful and f-up world we live in. It's makes me shake a little to think about Jaime and Simon and some one even thinking that they're not family to each other. Grrrrrrr


I'm going to take a break.

What a family...

I will say too that November 20th is auspicious for a third reason in that two of our dear friends became engaged today!!!

School Daze

It's been a heck of a week here in Shimmy La land. We've been battling colds, sleeping and not sleeping, making new sounds all over the place, and settling in to a regular weekly schedule with swimming and school.



Mostly it's the school thing that I want to share with y'all. As mentioned before, Simon started the Parent Infant Program a couple of weeks ago. It's a state run program for children ages 0-3 that have developmental delays. There are senior staff there that are trained in both OT and PT as well as several interns in early childhood development. There's singing and signing and snack time and an amazing array of toys to stimulate all kinds of senses and motor activities. Oh yeah, then there's the parent support group that I actually got to go to twice this week!! Simon (as was expected) did not miss me at all while I was gone for an hour. He's quite the independent explorer. What's nice though is the first 5 minutes when we arrive and he's still clingy. After that though it's "Mommy? Mommy who?" until we're ready to leave 2.5 hours later.



It's so interesting to see him be less verbal and less responsive at school. When we're singing the "wheels on the bus" at home or in the pool he'll almost always do arm motions (windows up and down, doors open and closed). At school, where that song is a regular, I see him just staring. At first I was disappointed and then quickly remembered that this is totally new to him, highly stimulating, and challenging him in ways that he's never been challenged in his 19+ months. And, it's awesome!!! One of the senior staff women just keeps telling me how much she notices him taking everything in. I imagine that in a few more weeks as he begins to feel this place and time as 'his', he's just going to take off.



As for me, it was absolutely incredible to be a part of the support group this last week. Twice I got to be sitting in a room with other parents that really get it. This altered,unexpected, no way to plan for parenting where you have to completely recontextualize milestones, strengths, and what a success looks and feels like. Really, it was kind of dreamy. How weird is it to say that?

I've started a new love affair with PIP and I'm so thrilled to have it continue for the next year and a half.

Here are some photos of Simon at his new 'school'.



So much to be giving thanks for again this year. Ginormous thanks heading out 'to you and you and you' (that's a take off from one of the morning songs that we sing at PIP...yes, I'm going to be one of those parents)

Some one's very excited about heading to school

(I can't wait to show him this when he's in High School)

Simon at snack time

Parallel playing with Simon's new friend Robin

Simon working out the order of things (going up the steps and down the slide)

Love to all

H1N1

Thank 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.

Trigger

It's a great name for a horse.

It's also how I'm feeling right now.

Triggered.

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.

And...it'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

Kisses!

No, that's not a monkey on my back...it'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)