It's Spina Bifida awareness month.
Many of us parents have been fortunate enough to find each other on line after learning there was something "wrong" with our babies. We desperately search out more information and we have been blessed to find each other. But more and more lately we are learning of people who didn't find us first, who only heard outdated or false information about children born with Spina Bifida and they make life altering decisions based on this.
I hear these stories over and over and its heart wrenching. What if I didn't have my faith? What if I believed all of those "predictions" told to me by all the professionals with "MD" after their names? Would I have "spared" my son, and the world of him? I can't imagine a world without him in it!
I wish my voice was louder, to scream from the roof-tops so any parent hearing those first words wouldn't feel so alone. They would instead maybe think "okay, I've heard of Spina Bifida, I've seen pictures, heard stories of incredible people living very full lives and I think we can do this". or at the very least, "lets get more information."
Collectively us as parents, grandparents, aunts, uncles, friends, we can DO something to spread awareness, educate. I will use what resources I have to these means. blogging, facebook, conversations at playgrounds, doctors offices. I ask that any one reading please do the same.
Another incredible mother summed it up so well:
"Spina Bifida shouldn't be something scary, sad, foreign, or feared as one would fear a death sentence. And yet every parent who is hears "I'm so sorry -there is something wrong - your baby has Spina Bifida" feels those things. Every pregnant mother who is left with the decision on whether or not to terminate her pregnancy based on a horrifying description of the "poor quality of life" their child will have - feels those things. And it's not only because we are overwhelmed with a diagnosis we didn't expect - it's because we are UNAWARE. We are uneducated, unprepared, unaware of what Spina Bifida really is. What it looks like. What it means for our children. What it means for our futures. We overlook what it CAN be because of what we FEAR it to be. Don't let Spina Bifida continue to be like a ghost in the shadows - shine the light on Spina Bifida. Be aware of the research surrounding it, the miracles born with it, the people who live with it, and the many who strive to REDEFINE it." -Joanna Penny
Alex is being featured in several blogs and articles. Check him out as well as some other very inspiring people!!!
Saturday, October 8, 2011
Alex narrating this post.
I know you've probably been wondering what we've been up to.
Momma means well but she just hasn't been good at regular updates.
I guess I'll have to take charge.
Here's my brother Nicholas.
He's going to LOVE me for sharing these when he's older, ha,ha.
He loves beads right now.
He's looking for more in his purse, ahem, I mean "bag"
Here he is trying to ask Momma for one more
thats how it always starts, right? always needing just one more.....
oh me? nah, I don't care much for the beads
well at least I know enough not to get caught!!!!
I'm on the go, go, go
Momma says I have stronger arms than her
oops, maybe I wasn't supposed to say that last part?
well anyway, I'm figuring out how to do LOTS of stuff
all by myself.
hmmmm. a cold beverage after a hard days work......
Here I am drawing
which I like a lot right now
But I REALLY like
watching the chalk roll down the driveway
and making my Momma
Momma says I'm more of the thinker,
take it all in kind of a guy.
My brother goes on and on
he's saying words like "more", "Elmo", "wheels"
and he LOVES saying my name over and over and over
especially when were supposed to be sleeping.
It sounds like "A-L-A"
I guess he can't figure out the "X" part yet but my parents
think its really cute or something.
I"m more of the strong silent type
but I am rivaling my brother in the squealing/singing department
Especially when my brother is trying to sleep during naptime he,he
my Momma says my brother tends to be the more wild and crazy one
He's got lots of energy
I definitely agree with the "crazy" part
For the record: this is the ONLY time
I let my brother push me around.
I actually prefer when HE does the pushing
rather than my Momma
I like to go FAST!!!!!!
Yeah, he's okay.
I guess we'll keep him!
Momma still working on getting a good photo
this is as good as we'll give her together
I don't mind posing for the camera,
solo at least
some random favorites:
oh here I am walking Grandma and Papa
They need their exercise you know (he,he)
and here's a pic of our best buds
A little weird how we all look alike, huh?
(oh I asked Momma and she said I was at the store
with Daddy during these pics).
Nicholas is in between the "other" twins, Matty and Ben.
Christopher is the "big" brother on the left.
This is our favorite hangout.
we get together at least every weekend
Momma says we point at their house
every day to go play.
she says we've all been very best (blessed?)
to have such good friends.
we like just hanging out playing
but we go a lot of fun places too.
we're quite a good looking crew, right?
Here we are at Strong Museum
with our best friends
The "other" twins are on the ends
Ben is on the left. He's the other crazy
in case you couldn't tell.
He and my brother get along GREAT
Matty is on the right, he likes to give me hugs
Christopher is the "big" brother.
Did I mention he's FOUR?
I can't WAIT to be FOUR
oh whats wrong with Nicholas you ask?
He might have spotted HIM about this time.
What the heck IS this thing??????
Momma says I should leave you with one
I am an overachiever
so I'll leave you with TWO