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.
8 comments:
Goosebumps...you do it to me every time. How is is possible that you can put into words the things I didn't even know I was thinking? :) Just beautiful. Love you girl...and that little Jet of yours.
Crying. :) I so agree with Leigh. i always read your posts and think yes, yes, that is exactly what I was thinking and that is perfect. Yet, somehow I could never come up with such a wonderful way of saying it myself. :) Love!!
Yes, this is exactly what I'm always trying to say, and you said it perfectly! I totally agree!
I'm with the rest. I've said it before and I'll say it again-you can take what I am feeling and put it so beautifully in words. Maybe I'll just have my blog be a big link to your blog and I'll say-go here and read this, then come back for pictures! :) Love you!
SO perfect....every. single. word.
Thank you!
Thank you so much for sharing these pictures and thoughts of your little man. I love the shirt too!
LOL at Stephanie! Yes, add me to the pile. I love it. You do have such a way with words. A is for Awesome, indeed! Jet is such an amazing little boy.
Throw me into this pile too!!! I just have to echo what every one else has already said: you hit the nail EVERY time with your descriptions. Its like I could have written it if I was smarter or more articulate. Thank you for speaking from ALL of our hearts. You are amazing!!!! and ofcourse it goes without saying that sweetheart Jet is as well!
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