Saturday, August 13, 2011

The Life That's Chosen Me

Erin Breedlove from Healthy, Unwealthy and Becoming Wise just shared this song/video on her facebook page.  It really touched me and sounds so much like what I say when I try to explain what it's like to have a child with CP.

The Life That's Chosen Me (written by Karen Taylor-Good and Lisa Aschmann)

We had such expectations, we would soon be giving birth
To the next Chopin, the next Einstein, the greatest child on earth
And we'd be the perfect family, soon we'd have the perfect kid
We'd never have a challenge or a problem, God forbid

Oh but Life had different plans, so I need for you to understand

Don't desert me, don't ignore
I need friends now more than I ever did before
Show compassion but please don't pity me
I'm a parent just like you, it's true
But I have special needs

I need you to notice that my life's different from yours
I need you not to judge me, don't condemn and don't keep score
I'd love an extra pair of hands, or just a hug or two
I need you to acknowledge that I carry more than you

Got the world here on my back, so I just thought I would ask

Don't desert me, don't ignore
I need friends now more than I ever did before
What you take for granted comes so hard for me
I'm a parent just like you, it's true
But I have special needs

I need answers, I need help, it's so much work
And a miracle or two sure wouldn't hurt

Don't desert me, don't ignore
I need friends now more than I ever did before
It's not the life that I'd have chosen, but it's the life that's chosen me
I'm a parent just like you, it's true
But I have special needs

I need you to listen, I need you to care
I need your understanding, I need you just to be there
I need your friendship, maybe a hug or two
Oh God I need a miracle.........

The parts that most resonated for me:

"Show compassion, but please don't pity me"


"I need you to notice that my life's different than yours"

These two sentences are pretty much the EXACT same sentences that I use to explain our situation to my friends. 
Did this song touch you like it did me?

Friday, August 12, 2011

On my way back up

My last post was a bit negative, but honest.  And above all, I try to be honest here when I write...otherwise what's the point?  The reason I chose to write that post is basically because I know that there are others out there feeling the same way...and there's nothing I hate more than reading a blog (especially a special needs blog) that's all "sunshine and rainbows"...because that is simply not reality.

I truly appreciated ALL of your comments.  Every last one of them.  Thank you so much for reading and really makes my day.  I especially liked Sarah's comment "It doesn't get easier or harder. It just gets different."  How true.

Since that post I think the rollercoaster has started to go up again...just check out this video of Ben walking up the stairs with his canes...totally independently!

Isn't he adorable in his train conductor costume?  And isn't Daniel a typical almost-4-year old trying to get in the shot?

So we go...back up to the top of that rollercoaster!

Monday, August 8, 2011

Who said this would get easier?

I thought this CP-thing was supposed to get easier?  Because lately it's been feeling a whole lot harder.  Last year, Ben was almost 3 and I thought it was hard having an-almost-3-year-old who can't walk.  That was a walk in the park compared to having an almost-4-year-old who can't walk and is starting to understand how it affects his life.

It breaks my heart to see him holding back and watching all the other kids run circles around him.  And I think it's starting to break his heart too.

Last year, he was doing so well with his walker, that I really thought that by now, he'd be using it like crazy and maybe even starting to use forearm crutches to get around...and maybe-just-maybe taking those first independent steps.

But nope.  Spasticity totally sucks and Ben struggles more this year than last year.  Often choosing a stroller or wagon over his walker. 

Last year, I had two happy little boys who really had no idea that Ben was any different.  This year, I take one little boy to soccer while the other one asks me why he doesn't have soccer cleats.

Last year, no one really noticed that I had an almost-3-year-old who crawled to get around.  This year I feel their stares and unanswered questions.

So yeah...I'm feeling the struggle a bit more lately.  I was doing so well all last winter...accepting this CP-thing.  Not crying all the time.  Actually feeling a little joyful on occasion.  I thought I was on the path to "this CP-thing isn't so bad"...but instead I feel like I'm on a detour that has somehow brought me back to those days just after diagnosis.  I'm having lots of thoughts that I thought I was done thinking.  You know the ones.   Things like "why us?"  And lots of others along that line.

I guess when people describe our special needs world as a ROLLERCOASTER, they hit the nail on the head, eh?  Now I'm just wondering when I start climbing upwards again...