Do you live here too?

I said I was on a break...and I am, but I'm still reading and I just have to direct you to this awesome blog post by my friend, Shasta...Dispatches from the Land of Not OK. 

There are many awesome blog posts and essays out there that are written for the parent of a newly-diagnosed child, but this one is meant for your family and friends...as a way to explain how life really is now.  Love it.

Break

Yep.  I'm taking a bit of a break.  From blogging.  I'm still here.  Still reading your blogs.  But just not up for blogging at the moment.  I'm not sure why.  Maybe just a bit too busy (the understatement of the year).

Everything is good with us.  Actually my new mantra is "Life is good today"  just like the main lyric from The Zac Brown Band's song "Toes".

Because really life is good.  Really good.

If you've been a long time follower and would like to still keep up with me (and Ben), then by all means, send me an email at aboutthesmallstuff at hotmail com and if I feel like I know you well enough we can be Facebook friends.

If anything big happens, then I'll be sure to pop back here and update you all.  We're still hoping that Ben is a candidate for a rhizotomy and are keeping all fingers and toes crossed that it'll happen in early 2012. 

Love to all of you.  And don't worry, I'll be back.

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"

and

"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?

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 commenting...it 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 yep...here we go...back up to the top of that rollercoaster!

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...

Dear Daniel

My dear Daniel;

I don't write about you much here on this blog, but that does not mean that I love you any less than I love your brother.  You are kind and sweet and so full of personality. 

You and I have a very special bond.  I think back to those days when I was the only one who could feed you as you struggled through every feeding...

You are my thinker.  My builder.  My little architect.  I love watching you as you play with your legos and blocks....not even knowing that I'm there....you are that engrossed in what you are doing.

And when you smile, the whole world smiles with you.  You have the best giggle and I love it when I tickle you just right and I am rewarded with that sound.

There is something about how you reach up and hold my hand when we're walking together that makes my heart do a cartwheel...I can't describe how much I love you in that moment.

Never change. 

Love,

Mommy



Playgrounds make me emotional

There I said it.  Playgrounds make me emotional.  And you know what?  They are everywhere.  Taking your kid to the playground is pretty much at the top of the "this is what normal parents do" list.  There is a playground just down the street from our house.  We drive by it almost every single day.  But we never take our kids there.  Never.  And every time we drive by it with the kids in tow, one of them will almost always say "I want to go to THAT playground Mommy".  And I just say "someday sweetie".

You see...when you have a physically-challenged child, playgrounds are a completely different experience.  No "sitting on the bench and chatting with the other moms" for me.  Nope.  I'm either helping Ben "climb" or catching Ben at the bottom or I'm on the friggin' thing with him.  And if there are a lot of other kids there, well, we usually hang back and watch or just decide to go home and try another time.

So we drive around neighbourhoods and find playgrounds that work for Ben.  And we've found a few.  Playgrounds with lots of steps and not so many ladders...because Ben can climb steps.  Playgrounds with just one big play structure instead of many small ones so I can keep an eye on both Ben and Daniel.  And most importantly, playgrounds that aren't very busy.  Because bigger kids seem even bigger when your main method of transportation is crawling.  And Ben gets easily intimidated by bigger kids.

So yeah.  Playgrounds make me emotional.  They make me sad, angry, and frustrated on occasion.  But sometimes, they make me happy...like when we went to the playground with "Sarah", Ben's CE friend.  And it totally worked for THEM.