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Tuesday, October 2, 2012

Our kind of life.

"To get through the hardest journey we need take only one step at a time, but we must keep on stepping."  - Chinese Proverb

The concept of moving on is often partnered with the idea of leaving something behind. If I were to sit down and explain our journey and pathways within the last three years, I'm not sure I'd characterize it as moving on and leaving something behind. It'd be more accurate to say we're moving on and getting used to it. All that has culminated is now a part of us and through bumps and blunders and short periods of darkness, we've floated into a very happy place for the time being. It's like normal life in this happy place. And it really feels like moving on should feel.

It's funny how the idea of moving on in our kind of life isn't really the same type of moving on for others. When I say "our kind of life" I mean having a child with severe impairment. The initial drive after suffering a traumatic event like a near drowning, choking, or oxygen deprivation at birth is to hit the ground running, move, move, move, get to that destination. The destination is different for everyone - complete healing, walking, or simply breathing without having to work so hard. What you don't plan on in this journey is to have to revisit things you thought you left behind for good.

A better way to explain it is this:

In the life of a typically developing child, they hit milestones, turn three years old, speak in full sentences. Unless some catastrophic event happens, you never have to visit three year old full sentences again. You move on. You build on it. But you never go back there again.

Recently, I've been reminded that this journey can sometimes feel like a track run, going around and around in circles. It's not only about reaching the desired destination or goal, it's also about avoiding having to return to unpleasant things. That's what moving on is about, right? You get to leave the bad stuff behind.

In "our kind of life," not really.

There are a few families in my little circle of mommies having to revisit decisions and realities they thought they got to leave behind. Years later, hard decisions still have to be made. It's one of the biggest punches in the stomach to have to face obstacles you thought you had defeated.

As for Christian, he is really doing well. We're travelling our path and it really feels like we're moving on.
So what's our destination?

To be a happy family. To soak up every minute Christian has on this earth. To love him and kiss on him and make sure he is happy and healthy.

It feels like we're getting there. We're moving on. But it doesn't mean that bad stuff isn't hiding in the bushes. It's there waiting for us.

I see families that are new to this journey and I feel sad for them. Because I know it's going to be painfully, unbearably hard. I think they have such a long way to go and I wouldn't trade places with them. I feel that way almost as if I hadn't ever gone through it myself. It's like an out of body experience when I meet these families. I guess that's part of the definition of moving on in our kind of life.

Sometimes I feel guilty for how accepting and at peace we are with everything. I feel guilty like maybe we look a little too happy when other families are suffering. But tonight primetime television had the best advice - Don't feel guilty. Feel grateful.

Tonight I am grateful for moving on, I'm grateful for our destination, and I'm grateful for our kind of life.

1 comment:

Jen said...

I love your Chinese Proverb, love it! We must keep on stepping, yes.

This was a great post. I agree with you completely, and have come really far, but not as far as you. I still have work to do : )

I have had the best year since the accident, by far though, but have some crazy other non-Avi stuff going on that somehow reignites the Avi I need to do some work baby ; )

I so agree with you, I don't think you should ever feel guilty for one second, but grateful ❤ ❤ ❤ Grateful all the way : )

And hey, hey, hey...that's not so yesteryear, they're baaaaccckkkk! it because once you have a baby it's over? Yeah, I see your point. But still. Be pregnant Snookie!! Don't forget to carry around your jar of pickles (and drink the juice!) Did you ever see when Dave and I were Pauly D and JWOWW? If not, I can send you some pics and if Manny wins the Halloween war, I will happily float you any of our Jerseyliscious accessory paraphernalia I can find. I know I have a fat pair of Playboy sunglasses sitting in a drawer for sure ; )

Love you girl!!

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