Monday, October 11, 2010

Before the Morning

Last night I met a dear friend for coffee for the second time in 2 weeks - and you mommas out there know that just DOESN'T happen without the stars aligning just so. We've been friends since middle school but haven't seen as much of each other as we use to - it's been so nice to reconnect with her. And this dear friend happens to take beautiful pictures. And she took some precious ones of my little boy and I a few weeks ago. She gave them to me tonight...and no surprise...I love them. I'd seen a few of these before - but to look at them all tonight in order was like a little story - full of sweetness and simplicity and real right-in-front-of-you love.
And in the spirit of SB Awareness month I wanted to share them with you - because to me - they express so genuinely the reality of this beautiful life we live - with Spina Bifida.
It doesn't control us.
It doesn't define us.
It doesn't stop us from having the most beautiful miracle babies...
with the most glorious smiles...
and the sweetest sugar...
It doesn't keep us from taking them to the park...
exploring God's creation...
(grass is not one of Jet's favorite creations...)

It doesn't keep us from singing "A Song of Sixpence"
(watch out for that black bird...)

and laughing every chance we get.
And though it threatened, SB did not deny us the great blessing of walking hand in hand...
and basking in the warmth of the sunlight....
...and each other.
Because all of that fear that threatens to suffocate you when you first learn of SB, or when days of hardship weigh on you and bring ominous clouds of doubt, all that darkness...cannot hide the light...
the beautiful light that is always around the corner...
glowing brighter...growing stronger...
ready to break through the darkness.
And let me tell you - it's an amazing feeling.
And it's a beautiful life.
There is a song - and every time I hear it I feel like it was written for me. (It's playing now -you can rewind and listen to it on Jet's play-list at the top right of the page). It is an amazing testiment to what I felt like when we first heard of SB - and what so many of us feel at different times in our lives. It expresses so perfectly what I would say to an expectant mother, father, family - who is scared and so lost at the thought that something has gone wrong with their unborn baby. Because fear for your child - it's one of the deepest hurts you can have.
So every time I listen to it's lyrics I am reminded (and yes I usually cry...surprise right?) of how some of the hardest moments in our lives...are just the dark before the morning.

Do you wonder why you have to,
feel the things that hurt you,
if there's a God who loves you,
where is He now?

Maybe, there are things you can't see
and all those things are happening
to bring a better ending
some day, some how, you'll see, you'll see

Would dare you, would you dare to believe,
that you still have a reason to sing,
'cause the pain that you've been feeling,
can't compare to the joy that's coming

so hold on, you got to wait for the light
press on and just fight the good fight
'cause the pain you've been feeling,
it's just the dark before the morning

My friend, you know how this all ends
and you know where you're going,
you just don't know how you get there
so say a prayer
and hold on
cause there's good for those who love God,
But life is not a snapshot,
it might take a little time, but you'll see the bigger picture

Would dare you, would you dare to believe,
that you still have a reason to sing,
'cause the pain you've been feeling,
can't compare to the joy that's coming

So hold on, you got to wait for the light
press on and just fight the good fight
'cause the pain you've been feeling,
it's just the dark before the morning

Once you feel the weight of glory,
all your pain will fade to memory
once you feel the weight of glory,
all your pain will fade to memory

Would dare you, would you dare to believe,
that you still have a reason to sing,
'cause the pain you've been feeling,
can't compare to the joy that's coming

So come on, you got to wait for the light
press on and just fight the good fight
'cause the pain you've been feeling,
it's just the hurt before the healing
the pain you've been feeling,
is just the dark...
before the morning

Wednesday, October 6, 2010

Trucks and T's

There are so many little things Jet does that make me smile and say "could he be any cuter?" And there are even more things that make me shake my head and say "could he be any more of a little BOY?" Jet is a "boy's boy" from his instinctive desire to growl and clinch his fists at me when he's angry right down to his appreciation of all things noisy and messy. Aside from his deep love for "The Princess and the Frog" which might be deemed more of a chick-flick in kiddie world - he is all snakes, snails and puppy-dog tails. And in this tradition he has a strong devotion to his cars. He has a dump truck and a cement truck to be exact - and he loves them both. They were the only "baby friendly" cars I could find that didn't have tiny little swallowable pieces and now that he has learned how they move - boy oh boy - he's in love. He scoots them all around the house (once again the hardwood floors are in his favor) and will go on like this for an hour.
It's hilarious. It's adorable. It's such a boy thing to do.
I love it.

video
In correlation with October being Spina Bifida Awareness month, some speical friends of ours -Leigh and Andy Gibbs (Grey's parents) - have designed a T-shirt to honor our little SB heros. :)
The front
redefine.jpg
The back
sbshirt1.jpg

The line down the back is representative of the spine and the words really express what it's like to live with Spina Bifida - and what it means to us. I think it is perfect and a great way to spread the word about SB. Another friend of ours, Kari (Toby's mom and originator of The Journey blog) has made the T-shirt available to order HERE at her buisness blog urbanupcycling.com. I can't wait to have ours and get a family picture of the 3 of us wearing our matching t's.
The T-shirts are 13$ and are available in kids and adult sizes.
They will be only be on sale until October 13th so don't wait! Order now and help raise Spina Bifida Awareness! :)

Monday, October 4, 2010

Hay ya'll...it's Fall!

(yes I know that's the wrong "hay"...but it makes sense...keep reading.)
I love the tiny things that make it fall....
Like pumpkin spice muffins and warm chocolate chip cookies on a Sunday afternoon...
(thank you Miss Jane for my adorable owl mug!)
Pumpkins and festive decorations throughout the house...
And chilly Monday mornings that bring snugly babies out of their beds....
...still a little sleepy... dressed in their comfy jammies and cozy socks...
...for some oatmeal and toast and morning cartoons....
I love the "did you see me playing with my toast?" look he gives me.
And if you think that little boy is looking a little different...
that's probably because he had his 2nd big-boy haircut over the weekend (cue collective gasp!).
Yes - we did it again.
(Hey -see the hay!? Get it? Oh so funny, right? lol.)
Yep -we traded in those curly locks for an all-american boy cleaned-up look.
I believe the word you're looking for is handsome. :)
Or maybe it's more like "ahhh! He looks so grown up!!!"
Yes - but he's still our little boo.
Silly little boo.
And while I love his little curls -
they're not completely gone...
And while I look forward to seeing them again in all their glory in a few months...(yes they came back before...I'm thinkin' they'll come back again)... I love his new look.

And though it makes him look a little different...
familiar looks like the happy "all-teeth grin"...
and the "bunny face"...
...haven't gone away...
So another season begins...my favorite season...
And again everything feels new with him...
Everything is new with him...
And we are "falling in love with fall"...
All over again.

Saturday, October 2, 2010

A is for...

Awareness.
October is Spina Bifida Awareness Month. I can remember when I had never heard of Spina Bifida - right up until my doctor called me to tell me that my blood work showed a possibility of our baby having "neuro-tube defect" or Spina Bifida. I admit for a good 3 weeks I though the term was "spinal bifida" that's how unfamiliar I was with it.
This is until the day we learned our sweet baby did indeed have SB, and Jet's Story began.
Since that day we Spina Bifida has transformed from an alien term, to a devastating diagnosis, to an unwanted hardship, to an undeniable blessing. Though we'd never heard of it - it is now a permanent part of our vocabulary. Though we didn't ask for it, it is here to stay. Though we didn't think we would ever be okay again - we are happier now than we ever imagined we could be...even before SB entered our lives.
Having a child with SB is so multi-faceted. There is no "oh it's easy" or "oh it's horrible."
It just is.
It is not without hardship. It is not without fear.
But it is full of love and inexplicable happiness.
I never knew strength until I met the parents of children with SB.
I never knew faith until I had to give my unborn son's healing over to God.
I never knew unconditional love until I kissed his tiny cheek the day he was born.
And I never knew all the tiny miracles of human life...until I saw him wiggle his toes.
I am blessed with a network of friends who take nothing for granted.
I am blessed with family who came together even stronger - all for the love of this little boy.
I am blessed with a perspective that brings me daily joy and counsels me in times of sadness.
I am blessed with the whole-hearted conviction that God is all-loving, all-powerful, all-knowing and has a plan greater than mine ever was.
A is for Awareness.
A is for the Amazing grace of God.
A is for the Absolute love I have for my little boy.
And A is for how completely Awesome he really is. ;)
To see more of the beautiful faces of SB, check out Other Little Miracles: Our SB Buddies which is also found on the main page of our blog.
For more information on what Spina Bifida is or what you can do to support your local SBA chapter please visit http://www.spinabifidaassociation.org.
Thank you.

Friday, October 1, 2010

Jet vs The Swim Class

Jet and I signed up for a 3 week Mommy/Baby swim class....
...and let me tell you it is fantastic!
He loves it! He loves the water and the other babies and splashing around and the echo his voice makes when he yells "DADADA!" at the top of his lungs. I love seeing him kick his legs (when he wants to...not when I ask him to) and pull himself out of the pool and "jump in" with a big smile on his face. It's perfect. I didn't know how he would like it but he LOVES it!
He has a good friend in the class too...
Miss Ansley
Aren't they so cute!?
Ansley's daddy came and took some pictures at our class on Thursday and then her mommy wrote an adorable blog post on their family blog that just explains all the fun perfectly. :) You can see it (and more pictures of these cute babies) here. Please check it out to see Jet in action! :) It is truly one of the best things we have ever done! I can't wait till next week!

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