Anina is gone

 

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

and

and

fear.

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.