Sunday, January 9, 2011

15 months and an homage to fellow SB moms

October 9, 2009.  This happened just yesterday, didn't it.  Today Evan is 15 months old.  It has absolutely flown by.  I could not possibly have imagined the road that we have been led on over the past 15 months.  When we found out about Evan's Spina Bidida we were devastated.  We felt scared and alone.  The doctors gave us a grim outlook and a lot of "we just don't know".  What I do  know today is that Evan is an amazing little boy and Spina Bifida has brought much happiness into our life.  Early on in the pregnancy, I met a few parents whose kids had Spina Bifida as well an adult who had lived his life with Spina Bifida.  He had a great outlook on life and made me constantly feel good about what was coming.  15 months later, I am in contact with families across the country, well really around the world, whose lives are also affected by Spina Bifida.  This has been such an amazing gift.  I have learned so much from these other moms and families.  As much respect as I have for our doctors, they don't live Spina Bifida everyday like we do.  They can provide us with their professional opinion and knowledge, but it's the other moms who know, who truly understand what you are going through.  They understand the struggles, the constant doctors appointments, the fears, the frustrations, the happiness, the joy.  When one of our kids takes its first steps it's a celebration for all of us.  When one of our kids has to go to the hospital for another shunt revision it tears at each of our heart strings.  I have never met most of these women, but they are my friends and many days my strength.  When  I am struggling or I am having one of those days where Spina Bifida has gotten the best of me, I simply put a post on Facebook and in a matter of time there are my fellow moms, sending prayers, wishes, good thoughts  and support to us and it brings me the resolve I need.  I am forever grateful to have this amazing support system. 

4 comments:

  1. Geez you made me cry!
    I don't know what I would do without you SB mommies, and the support that comes out from writing a couple of words.

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  2. I may not be like everyone else. I might not understand whats going on, but as Evan's godmother and most important aunt, I will always be there as an extra ear or do anything to help you out!

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  3. This says exactly what I feel about all of the SB moms I "know"! Most of them I have never met in person (and probably never will), but I count them among my best friends and turn to them first when I have doubts, or questions, or concerns about my son. I am still amazed at this secret, silent army out there that I never knew existed until I joined it's ranks. What a beautiful blessing!

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  4. What a great post...and SO SO true!!

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