Spina Bifida Awareness to me, is about making people aware that Spina Bifida is not a terminal condition. That people living with SB, can live long fulfilling lives just like the rest of us.
This is our face of Spina Bifida.
I want to share a quote a fellow SB Mom friend of mine posted on Facebook.
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
I also want to share a post a mom left on a Spina Bifida support forum I belong to. She was given misleading information about her unborn baby, and was lead to believe she had no other option but to terminate. To hear her story, her regret, is heartbreaking. She was given encouragement to get help from the other mothers on the board, and I am proud of them.
I am posting a screen shot of it here, for any mothers that may stumble across this blog in the same position, that they may question those doctors and follow their heart. For my friends and family, it is not for the faint of heart, so please keep that in mind before choosing to read it.
