Friday, August 1, 2014

Hanging Out With Eagles

Today was another one of those hold-your-breath-its-really-happening days.

I've been letting Patrick hang out on his own at home.

Just like with typical kids, there's no manual for kids with Down Syndrome.
No rule book.  No cheat sheet.
I really wish there was, trust me, because most of the time my parenting tactic is: 
guess --> see what happens and hold your breath --> adjust.

I try not to be too crazy cautious with Patrick.
That alone is a leap of faith...and a generous reliance on the rest of humanity 
out there in the big, bad world, 
and it's oh so hard.

Not hard for him by the way...just hard for me.

Anyway, he's been on his own at home, probably watching too much TV but learning to have independence.

Today I had to run around and do errands and thought that might be a good chance for Patrick to hang out on his own.
Every other time I've left him, I've found him watching TV or on the computer when I get home.

Today I found him cooking.
He made his lunch.

It was a gourmet sandwich of tuna and turkey. 
He found some tortilla chips and some cream cheese and thought that might be a good combo as well.

When I got back, he had that smile on his face that feels so great to see.
The I-did-it-and-I'm-awesome smile.

As a parent, there is nothing better.

When they're toddlers or preschoolers, you see that look all the time.
As a school age child, occasionally you see it and boy, does it feel amazing.
As your kid gets older and older, it's like a rare sighting of Sasquatch,  you're not even sure if you've seen it...many, many times, their eyes are down and they are smiling to themselves...sometimes there's a perfect moment and your eyes catch each other and you telepathically high five -- with a goofy grin across your face.

Maybe it's because every single step forward is hard won for Patrick, 
or maybe it's because I just don't have any reference points on my trail...
no cute pile of three rocks showing me I've made it to the next spot,
for some reason, the most basic steps forward to independence are marvels and wonders.

Every time, it makes me value my own independence.

It's pretty amazing I can live on my own, navigate the world, pursue my dreams and help my kids and John to work toward theirs.

I don't need much support...but maybe that's because I've been allowed to hang out with eagles my whole life...
there was no question I would fly.

But when you're born with a disability, people want you to hang out with the chickens...
they want you to earn your way to the eagle's nest.
You need to prove your worthiness.


Sometimes, you don't even get to hang out with are thrown away, discarded and worst of all disregarded.

Here's a real life example of what just happened to a baby that had the audacity to be born with Down Syndrome while his twin sister did not.


So today, Patrick made his lunch, watched the clock, got his stuff together and 
headed off on his bike to camp.

I hounded him to make sure and text me when he got there.
He promised he would,
and he did.

Later he texted me this costume is amazing.

...another trail marker...
three pretty rocks.

Presume competence.
Offer supports.

And then,
...hang out with the eagles, my boy...
Fly, Patrick, Fly.

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