Thursday, November 18, 2010


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We saw two of Simon's peers from our birth group last weekend and Laura and I are both reeling from it a little.

Seeing these boys comes on the cusp of us beginning a major round of assessments to prepare for April, when Simon turns 3, he ages out of his Early Intervention Program and will begin...something else. What that "something else" is, we aren't exactly sure and it's freaking us both out a little.

The assessments are the first part of the development of Simon's Individualized Education Plan (IEP). An IEP is the legal document that says what Oakland Unified School District must provide for him, based on his needs- both educational and medical. Depending on what these assessments find and what the district can provide, we could end up in any number of situations, including being told Simon:

1) can go to a regular preschool (a whole other can of worms to be discussed later)
2) can be in a class for Medically Fragile kids through the district (might be the best choice?
3) will be in a "special ed" preschool which could include kids that are severely cognitively and socially delayed (not ideal since Simon seems to be catching up and needs to model off "typical" kids)
3) will go to something in another school district because there is not an appropriate class for him in our school district (possibly a very cool school in Berkeley for mostly hard of hearing/deaf kids that has mainstream kids plus onsite speech and OT)

It's not news that he's delayed. We know he's A LOT smaller than other kids his age. He's talking all the time but not saying much (not great communication). He doesn't run, jump or and hates to walk any sort of distance. Still no eating. We know this intellectually but mostly it's just sort of in the background.

Then we hang out with typical kids that are his age, who are running and riding tricycles, talking in complete full sentences, and having complex imaginary play, and those delays, that gap between "typical" and "Simon" suddenly feel like the Grand Canyon. It's a little shocking.

We don't quite have all the info to know if he's as behind his peers as he was a year ago or if he's catching up. I keep wondering if the differences are just more apparent but not as severe or if the train is really picking up speed and going to leave us behind forever. And that is giving me major flashbacks to my own struggles as a kid.

When I was 5, a bunch of things happened all at once, including my parents splitting up, moving to a new city, leaving my preschool and starting First Grade part-way through the year with a really strict and not particularly warm teacher. The combination kind of knocked me on my 5-year old butt and looking back, set me up for some struggles academically and socially.

Because I knew how to read, folks decided that I should start First Grade instead of going into Kindergarten. It was the thing to do those days- put girls ahead a year if there was a question (and hold boys back a year). Unfortunately, my number/math skills and handwriting were very weak and I was working some big stuff emotionally out about all the changes. I ended up struggling with math and handwriting my entire academic career and had a hard time connecting with my peers until I was an adult.

I was behind in some areas. Kinda like Simon.

Most of the tears I shed in my childhood were borne of sheer frustration and panic that I was getting left behind academically (even with extra help) and not quite fitting in socially. The thing I remember most distinctly was feeling like I was never going to learn things, particularly in math.  The things we were learning were building on the things I was already supposed to know (and was struggling with) and that the train was picking up speed and I was never going to catch it and be able to chill for a minute and catch my breath. I wanted to give up on trying so many times because it felt like  it was never going to end and I just had to keep running or I'd get left behind and...

There's a chance he might not ever catch up.  He might always feel like he's behind everyone else and will never catch up.  And I can't really fix it. I never want Simon to feel that pressure, that hopelessness, that feeling of being totally overwhelmed.  And I'm sure he will. I guess I should re-read my post about not being able to protect kids from hurt and instead promote Resilience.

As we're at this crossroads with Simon, when we have so much attention focused on his development and "catching up" and "being behind", I'm struggling to keep my perspective. Some days are certainly easier than others.  Lately, not so much. Especially since his speech assessment found "processing" problems, which sounds sort of different from "delayed".  It actually makes sense, given what we're seeing in terms of how he's picking words up and using them, or not using them as the case may be.  Just not sure how to put in in context, so we'll wait for the report.

I'm trying not to freak out about the possibility that he's not just delayed from his hospitalization and will catch up but that he could have some lasting, permanent cognitive impairment.  He was given a crap ton of meds (I should look through his charts and count.  I bet it's over 20, including some really intense antibiotics) and had low oxygen saturation while he was going into heart failure and septic twice and... It just never occurred to me until now that he could have lasting cognitive issues on top of the health issues. 
Then the spinning about money starts...

If he gets "OK'd" to go to a typical preschool, then we're worried about cooties and a high teacher to student ratio to help with his tube feeding etc. The kinds of schools that have better student/child ratios and kids that tend to not come to school when they're sick because they have stay at home parents or nannies cost an arm and a leg and tend to be pretty homogeneous in terms of race and class.

So...we're wondering if he'll be in some inappropriate class through the district or how the hell we'll afford a private fancy preschool if that's what looks like the best option, when we're already trying to cut it on $60,000 for a family of three in the Bay Area and 1/3 of our income goes to medical expenses and we're already getting a cut on rent for our 1 bedroom apartment and despite the fact that our parents are already helping us financially, we still fall within $100 of our income every month.  Then my Protestant (funny b/c I wasn't raised Christian) work ethic tape starts up and I feel like crap for being 34 and getting financial help from our parents and wondering if I'm totally irresponsible for having a child when it's ended up meaning we can't cut it on our own right now and wondering when I will ever not need all this damn help from everyone. 

Some days I'm so grateful and thankful and oh-so-Zen about it all.  Other days I want a vacation from my life and to worry about nothing but what movies I'll watch and what to cook and how to decorate a clean, orderly home with all my disposable income.

Monday, November 15, 2010

Anina is gone

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We have talked about Death being right outside our window, sometimes sitting as close as across the room from us, keeping vigil with us. Not necessarily waiting but just keeping vigil.

Tonight we know that she has left our family and gone to visit another. Sweet little Anina girl, who was admitted to the ICU just days before us, also with DCM (Dilated Cardiomyopathy), has had Death come for more than just 'keeping vigil'. Anina got wrapped up in one of Death's shawl's and taken away from her family.

I collapsed and cried the same way that I did that day, that awful weekend when we began planning to say goodbye to Simon.

What other parent walks through their days knowing that it's more than likely that they will be saying goodbye to their own child's peers and praying so hard that it's not their own?  THAT, is fucked up. Say it again slowly...fucked....up.

Driving home from my time off this week I was listening to Winter Song by Sara Bareilles and Ingrid Michaelson

This is my winter song to you.

The storm is coming soon,
it rolls in from the sea

My voice; a beacon in the night.
My words will be your light,
to carry you to me.

Is love alive?
Is love alive?
Is love...

They say that things just cannot grow
beneath the winter snow,
or so I have been told.

They say we're buried far,
just like a distant star
I simply cannot hold.

Is love alive?
Is love alive?
Is love alive?

This is my winter song.
December never felt so wrong,
'cause you're not where you belong;
Inside my arms.

I still believe in summer days.
The seasons always change
and life will find a way.

I'll be your harvester of light
and send it out tonight
so we can start again.

Is love alive?
Is love alive?
Is love alive?

This is my winter song.
December never felt so wrong,
cause you're not where you belong;
inside my arms.

This is my winter song to you.
The storm is coming soon
it rolls in from the sea.

My love a beacon in the night.
My words will be your light
to carry you to me.

Is love alive?

And I thought about how it does feel like living in winter. There is so much possibility that is covered under heavy snow and thick grey clouds. There are certainly clear sky days and green things poking through but sometimes it just feels like Winter with very little hope. This is one of those times.

Who the hell lives their life thinking that they might outlive their child?! It's fucking exhausting.
But I don't think about it all that much because there are therapy appointments to go to and developmental milestones to celebrate ( or dread- yes, Simon has found a new love affair with the word 'No').

But really come on. 

One more moment of learning that another mother has arrived at that unthinkable and illogical place of losing her child. I was that mother for an instant and for whatever reason got a reprieve. But I know....I know.
I know that moment that no mother (or any parent or caregiver) should know. The one where you are faced with losing your child. We were at that door, standing on the welcome mat, and for whatever reason Death didn't open for us and we got to take a step back. We're not off the porch just yet and I don't think we ever get to leave more than the front yard....but that door wasn't opened for us.

Anina is gone.

Just a little younger than Simon, big beautiful brown eyes, and thick black hair that poked up from under the pink headband and bows that her mom put on her.

So here I am.  Supposed to do what? Feel what? Guilty, afraid, devastated, relieved, enraged, thankful, what?

I love Simon so much. I hate this disease. I love our life. I hate this disease. I love being Simon's mother. I hate living with this fear. Simon might die. It doesn't matter how fucking stable he is. He lives with Cardiomyopathy and nobody out there can tell me that it's going to eventually be ok. Nobody can tell me that.

So what? He's got a speech evaluation tomorrow and had a physical therapy evaluation today. He barfed a lot today. I listened to his heart rate. It was fine. I'm planning for the upcoming IEP meetings and assessments as he gets ready to turn 3 this coming April.

Planning, scheduling, dreaming, looking forward, plugging on....and it doesn't mean a thing because my son lives with a heart condition that doesn't necessarily always move in one direction.

A heart condition.

A heart condition that takes away little children from their people. How the fuck do you live with that?!

I used to be one of those people that looked at the larger picture and how to make things better. I remember learning as a young adolescent about some awful study that showed that babies that weren't touched and held ended up dying and/or developing serious disorders. I believed right then and there that us humans had better learn how to connect to each other in authentic ways and in doing so could really affect the awful systems that keep us from doing that. If we could find those connections across lines of race, class, gender, sexual orientation, religion, etc, then we could begin to move toward that imaginary but possible society where things are actually just and loving. And I spent at least two decades making that a core piece of the work that I did with children, with other adults working with children, and in my own personal relationships.
And I believed that there was progress. There was always room to improve and move forward but that was also inspiring and energizing.

And now, I don't have that larger perspective. My life's work right now is with one.

One spectacular human being for sure but one. And it involves minutia and therapies and maintenance and barf and medicine and





And yes hope and yes faith and yes beautiful wonderful moments of growth and progress and development but I also have the very real possibility that some day Simon's heart will decompensate again and not be good for more time, like sweet Anina.

I have said out loud that I can't imagine what that's like but then I always find myself making the correction I can imagine that because I was there. And my peers and Simon's peers....we can imagine that because we have either lived it or have come right within a hair's breadth of it. Like no parent ever should. I don't want this. I don't want it anymore.

And that doesn't matter.

Tomorrow is a new day for sure and I'll be able to get on with it and I'm sure that something will happen where I will laugh and feel blessed beyond belief and/or not feel blessed but certainly better off than a dung beetle.

Tonight is not that though and I'm going off to bed now to cry and hold Anina's family in my heart.