Showing posts with label special needs. Show all posts
Showing posts with label special needs. Show all posts

Thursday, December 1, 2011

On not being alone

I cringe to think where I'd be (emotionally) if I hadn't found this blogging world and this amazing, special needs, blogging community. 

You see...for some reason, the real world only seems to have normal people, normal couples, normal kids and normal families.  And for me in particular...normal twins.

But the special needs, blogging world?  Well, it has people with cerebral palsy, people with autism, people with down syndrome and spina bifida and on and on and on.  It has kids that need wheelchairs, and walkers, and crutches.  It has adults who need communication devices, guide dogs, and adapated vehicles.  It has families whose homes are filled with medical equipment.  And it has families whose calendars have multiple medical appointments week-in and week-out.

And even though, I know it's not really true that the real world only has normal families, it is certainly how it feels.  Like last week, I took the boys to their first introduction to kindergarten (an-hour long "session" in the classroom) and of course, Ben was the only one who arrived in a wheelchair.  And needed to be carried between tables. 

When I'm in the "blogging" world, I can talk about botox, and surgery, and appointments and it's "normal".  I don't get pity looks and comments like "I don't know how you do it".  In the "blogging" world, I can celebrate the tiniest bit of progress and know that the people "listening" will really "get it".  In the real world, I feel like I have to explain so much about what the progress really means that I usually don't even bother. 

In the "blogging" world, I can actually call up another mom (yes, Ellen - I'm talking about you here!) and get all sorts of fantastic information on what it's like when your child undergoes selective dorsal rhizotomy.  In the real world, people don't even know what cerebral palsy is, let alone what SDR is. 

And for some reason, most importantly (for me), in the "blogging" world, twins don't always do everything together.  Moms don't complain that they "can't keep up with their twins as they are always running in opposite directions".  Instead, there are twins that are both affected by special needs or twins where only one is and the parents don't know quite how to handle that.  There are twins that go to different schools and twins that don't really get to "play" together.

I guess what I'm trying to say here is that I would hate to imagine my life without this amazing community that I've found myself in.  Without it, I would feel alone and on the outside of "normal".  But with it?  I feel "normal".  My kids seem "normal".  And our life seems "normal".  Because in this community, special needs are the norm. 

How cool is that?

Stumbo Family Story

(I'm blogging as part of "CP Connection".  Click on the image above to see where it started and find other blogs that are participating.")

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"

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?