A Journey with Love and Laughter

Read about our family as we journey through life as a family, with siblings, school and spina bifida, and lots of fun and laughter along the way!

Thursday, April 22, 2010

My personal Obsession with SB awareness



I might be a bit obsessed with things that proclaim that I have a son who has spina bifida. I have a diaper bag that talks about being the mother of a handicapped child (I'm not sure what I feel about the word handicapped - but I like the poem otherwise), I have a bumber sticker that says 'I am proud of someone with spina bifida", I even got a t-shirt for Nickolas that says "Spina Bifida Child Child with Spina Bifida" on the front, and the back "Any questions". I also wear a yellow awareness bracelett that says Hope - Faith - Courage - Strength, and Nickolas' Loved One on the inside.

And I also have my whole 'This is what spina bifida looks like' personal motto for Nickolas. I know there are all variations of spina bifida, and as a baby he is doing very good. But what gets me, why I want to show everyone that 'this is what spina bifida looks like'. Is becasue we were still given a worst case scenerio. We were told to reconsider having him. That we may be making a mistake (by continuing with the pregnancy). And he's here, and he's great, and everyone who thought we were making a mistake can shove it!
I just feel that if people were educated about spina bifida and hydrocephalus, and could see these kids, they would see how wonderful they are.

To finsih off my spina bifida swag I found a site that allows me to create (and 'sell') spina bifida awareness stuff. I made a bumper sticker that says 'Someone with SPINA BIFIDA makes me smile' and a onesie that says "This is what spina bifida looks like". At times I feel like I am getting carried away. That I am making the spina bifida my life. I look at all the sites, follow a bunch of blogs, write this blog and in my journal, wear the awareness bracelet, have the bumper sticker. What I am trying to do is not hide it. It is not something to be ashamed of - we are not ashamed. We are proud of Nickolas, and the spina bifida is not his life.

Anyone who is interested, the stuff I mentioned is available on the cafepress.com website. But really I just did it for my own interest.

Another t-shirt I found that makes me laugh "Shunt Happens".

2 comments:

  1. I love "shunt happens", how cute is that!

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  2. Good for you! I love the "This is what Spina Bifida looks like." I've always sort of tried to make Nate a poster child as well, because it just makes no sense to me how anyone who sees our beautiful kids could possibly think twice about not continuing a pregnancy.
    There have been lots of times when I wondered if I was focusing my life too much on the SB. My husband doesn't want our life to revolve around it. But now look, I've gotten myself a job at the SBA, lol! I think you're doing great.

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