Sunday, October 2, 2011

**Calling All Spina Bifida Friends/Family!!**

For many, SB Awareness means promoting possible preventions and making sure every woman of child bearing years is on the folic acid train. Which is fine in some ways, but not really to us! You see, Gretchen and I were amongst those that did everything right during our pregnancy and we still have a child with Spina Bifida. So many times we see those campaigns and ads, and to us, they feel like they are pointing fingers. That is NOT what Spina Bifida Awareness is about!

To us, Spina Bifida Awareness is far more positive and inspiring! The darkest part of our Spina Bifida journey was the days and weeks after diagnosis. There are SO MANY unanswered questions, so many unkowns, and so much false information given (even at times by doctors!) that this time was a corridor of darkness. Our hope is to bring inspiration & hope to those walking in that corridor. We hope to share the knowledge that people with Spina Bifida are PEOPLE with wonderful, full, blessed lives. Our prayer is to bring HOPE to each person, hope that even though this is not the path you would have chosen per say, it is a path worth journeying on.

To do this we need the help of our Spina Bifida family, and this is where you come in!!!

Each day of October we want to share a story of hope, inspiration, validation, overcoming difficulties or accomplishing victories from our Spina Bifida family. Also, we would each like to do a "Day in the life of" feature, once a week on our blog! (BTW, if you don’t know us, then you might not know this, but just living a life that SB touches, makes you part of our SB family!) We would LOVE to have you send us a story and a picture to go along with it that you think would further this cause of Spina Bifida awareness. Each day of October we will post one, and through this project pray, we bring the awareness that goes so much deeper than folic acid and prevention (and please hear us, those are important, but they are not the whole picture!)

If you would like to be part of this project please send an email to or that includes:

~Your name, and a little bit about how Spina Bifida touches your life (Do you have it? Are you a parent of a SB child? Are you a Grandparent? Does someone with SB touch your life regularly and you feel lead to share?)

~The story you would like to share.

~A picture or a few pictures to accompany the post.

~A link to a personal blog or web site if you would like it included with your story (no product or sales sites please!)

~An email for us to contact you at.

We would love to hear from ANYONE whose life is touched by Spina Bifida. We want to include as many views as possible. Are you an adult with SB? Are you married to an individual with SB? Are you the coworker, pastor, employer or dear friend of someone whose life is touched by SB? Are you the grandparent, aunt, uncle or cousin of a child with SB? Are you the sibling of someone with SB? We would love to hear your story! I think you get the picture… We want to hear it all!

If we are blessed enough to receive more than 31 stories, we will continue to feature the stories on our blogs, weekly until they have all been told!

These stories will be featured on and….. until they have all been told! (and how cool would it be if this just went on and on and on??)

Please participate with us! We would love to hear from you!

-Gretchen Soares & Tiffany Whalen!


Scasmflops said...

love!!!! will be sending you ours shortly. - Karen ORR

Gretchen said...

This is so much fun and I am so honored with the stories people are sharing... please keep them coming :-)

Kier said...

This is awesome!

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