Thursday, August 2, 2012

The Day After

It is the day after.

Four years ago yesterday Simon was diagnosed with Dilated Cardiomyopathy (the left ventricular non-compaction sub-diagnosis came later). We began our 112 day stay in the ICU at Children's Hospital Oakland. We began to live a whole new life as a family. I began a whole new life as the stay-at-home mom of a child with core medical and developmental 'special' needs. Life as I knew it was intrinsically changed. Intrinsic- native, innate,  natural, true, real.
It happened in a matter of hours but has lasted for every moment of the last 4 years and will continue for I don't know how long.

At 6am-ish 4 years ago, Jaime strapped him into the sling and took him for an early morning dog walk.
At 6am yesterday I woke him up and got his 4 meds and 10oz tube feeding ready.

At 6:30am 4 years ago, she came back and let me know that she thought she heard a funny cough from him and she hoped that he wasn't catching his first cold.
At 6:30am yesterday we turned on Sesame Street, Simon named each of his medications as I pushed them through his G-tube, and we started the pump to give him his blended breakfast.

At 10:00am 4 years ago Simon took his 2nd nap of the day. I thought it was a little odd since usually we had a solid couple of hours of waking time between his first and second nap of the day but didn't think much of it.
At 10:00am yesterday we met up with the Cubs at FairyLand for a day camp field trip. I am the only parent with their child because of our special agreement with the camp that Simon have an aid with him to administer tube feedings and diaper changes as well as help out with herding since Simon is considered globally delayed in development.

At 12:00pm 4 years ago Simon is finishing up his 3rd nap of the day and I have an inkling that something is 'off' but I am more focused on getting his diaper bag packed with everything I need to go to see Jaime for lunch and then go right to Mommy and Me swimming time. My Dad is visiting for a few days and it will be his first time with Simon in the Pool. Very exciting.
At 12:00pm yesterday, we are saying goodbye to the Cubs at FairyLand because Simon has pooped in his diaper and I don't have his pump bag with me for diaper changes and/or Lunch which it's time for anyway.
(I am not a bad Mom, there was miscommunication between me and the camp staff about whether or not I could drop him off but not 'be' with him since he does so much better hanging with the group when I am not there. I thought I could be five minutes away at home and come for lunch and/or a diaper change if need be so that he could still get the camp experience.)

By 1:00pm yesterday Simon and I are back at home, lunch is done, and we are getting ready to head out to Little Farm in Tilden Park. We need to pick up Celery and Lettuce to feed the cows, chickens, goats, and sheep.
By 1:00pm 4 years ago we had turned around on the freeway back to Walnut Creek and our pediatrician. I remember feeling sad that we were going to miss swim time and maybe i should wait an hour so my dad could get to do this with Simon.  Something in me said no and what ever this was needed to get looked at.

So we turned around and started what would be a never ending 'medical' life. A simple wheeze from our baby demanded a dr's visit. Confirmed wheezing from a dr means an ER visit. A chest X-ray ordered to rule out Pneumonia. A chest X-ray for the lungs inadvertently shows a heart much larger than it should be. An ambulance ride. Another ER. IV lines. Admittance to the ICU.  Intubation. So many needles and lines in a little body. No sleep. Pumping breast milk. Lots of beeping. All the time beeping. Touching Simon in anyway that I could. Needing to hold on to Jaime at all times. Not being able to hold Simon. Learning the words, the terms, the possible outcomes. That first meeting with a pediatric cardiologist. Who knew I would ever need to meet with a pediatric cardiologist?! Hearing that we would be in the hospital for at least 3 weeks and thinking that was such a LONG time. Hah. 4 months later....

It all happened yesterday. 4 years ago yesterday. It was one of those days when the lines between the past and present are gossamer thin. I was feeling it all again. I think I will every year. Some years more and some years less. But yesterday Simon and I were in it. He was having a hard time too. We both were. He wouldn't get out of the car. He threw crayons and cups and syringes. His homeopathy (5 drops of water) made him throw up. He lay down on the floor in Trader Joe's and just cried because the cart that he likes to play on (the motorized one) wasn't there and on and on.

Yes, we've come so far. Simon didn't die. He's thriving. He is loved and loves back so strong. We have community and family support the likes of which I had never even thought to imagine. He has made it through colds and fevers and Hand Foot and Mouth disease. His heart function has improved. His eating is slowly but surely improving. we have health insurance. We have family. It's all true.

And yesterday I was angry. I was so angry I didn't know what to do with myself. I didn't choose this. I didn't apply for this. I hate cardiomyopathy. I hate it with a fury born from the same powerful root that is how much I love my son. It's for both of us that I hate it. I'm not saying I hate my life. I don't at all. Some days are harder than others but I wouldn't trade it for the other.

There's the wish-full fantasy-full trade ins that I think about sometimes. Given a time machine and powers that don't really exist,  I go back and re-imagine a life with no ICU, no tubes, no dilated left ventricles, no therapy appointments, no's hard to imagine a parenting life like that. I know it happens. I know there are also other stressors that pop up. "My kids a biter" "My kid eats boogers like they're candy" "My kid has tantrums that register on the Richter scale". Still...wouldn't it be nice....

I do think about what it would have been like to go back to work in November of '08. I do think what it would have been like to have to choose between pre-schools based on which one had the curriculum/hours/snacks we liked more and not which one would acquiesce take him in spite of his medical and learning needs. I wonder how it would feel to manage our families finances without feeling the bank break save for the significant contributions from our parents.

I do think about that. Not very much though. There's just not enough time. Mostly I feel in the moment. The good ones, the hard ones, and all the ones in between. It's something a lot of people spend years and large amounts of $$ trying to get to.

The thing is...I didn't sign up for this enlightenment. It's not based on choosing to meditate every day. I didn't go to a retreat and come back with new sense of my place and rhythm in the world. I didn't solo in the wilderness for months, unless you consider the ICU a kind of wilderness and I certainly wasn't solo.

There is gratitude for sure. But how much more enlightened would I be if that gratitude didn't have to come in the face of surviving great trauma. How great would it be to feel the support of community without having to have them feed me and my family (literally and figuratively) through lean lean times. Maybe I wouldn't feel it at the same level, maybe I would. I won't ever know because these last 4 years happened this way and not another.

I have never done anything this much for this long (except be in love with my wife and that certainly hasn't been static). I have never had one job for this long. Not school. Not anything where I can say I have pretty much done the same thing over and over again day in day out.  That's not to say that Simon hasn't changed. Puhleeeez. He is certainly not the same person that he was one year ago, let along 4. But somehow it feels so much the same, being the stay at home mom of that amazing infuriating little guy. The world that I inhabit (mostly by myself) between 6am when we wake and 6pm when Jaime gets home from work has not changed much since 4 years ago.

So I drink in another August 1st marker. I remember that day like it was yesterday (which it was) and feel immense gratitude for how far we've come. I feel immense anger at having to come from there at all. I feel sadness for the life that was lost. I feel relief that there is still this life to work on, making it as joyful as possible. I feel fear for what the future holds. I feel tired and pissed off and guilty.  I feel held by so many and so much so that feeling all these feelings is just fine. I feel.
I feel like it's time go pick up Simon from day camp. Because it is.

Check out my beautiful son

Naked Chef

 Perfecting his Burning Man look

Dino Decals make the room brighter

Riding Custard (bareback!)

Dude is up on his knees!

Working on Standing (and having Custard take a few steps!)

August 1st 2012

We're here. Thank you for being a part of getting us here.

We love you.
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