It will consume your life.

That was the words that we heard over and over after Gavin was diagnosed with spina bifida in-utero. "you will live and breathe spina bifida" they said. He won't walk, run, play sports, he may not know when to use the bathroom. Such a grim outlook. Surgeries, doctors, catheters, enemas, wheelchairs/braces filled his future.

Well they can all kiss it, because they could not have been more wrong.

One day with in this past year I got an email from a woman asking how my son with spina bifida was. I was happy to oblige with how he was, he was fan-freaking-tastic.. I went on to tell her how amazing he was and how wrong the doctors were and how I wish they (doctors)were better informed, one would think they would be with how common SB actually is. Her next reply made my heart sink, she had aborted her child because that baby had spina bifida. Doctors gave her the same out look. She bashed me, yelled (well as best you can in an email) "how dare I say the doctors don't know what they are talking about" It was impossible to back out at that point, I got trapped in that conversation. She finally calmed down, apologized as did I. She did what she did based on the info given. Why are we given this info? Why worse case scenario? To protect us? Why aren't they better informed or if they are why don't they tell us like it is, "we don't know" because they don't.

I wrote something in a comment today "Gavin has been over 2 years without any surgery". Well as a matter of fact he has had his original shunt for over 2 years, another impossible task per doctors. I still to this day think he doesn't/didn't need it, but what do I know, I have no PHD.


Why did I have to search so hard to find support, to find people that had been in my shoes, someone that would give it to me straight. The cold hard truth consensus was : My child with spina bifida has been the best gift, my child with spina bifida is the most amazing child. I wouldn't change my decision despite... Real people, real children, real lives, true love. Amazing support from all those ladies. I remember one of the ladies saying "don't google" well call me dr. google because I live by google. seriously, don't google. All I wanted was to see REAL pictures, I wanted to know what to expect, what will it look like. I couldn't find any. I contacted the local SBA chapter, she sent me a huge box, lots of stuff, pens, paper, a few books. Soon after that they shut down that chapter. There isn't one in VA, no resources, no one to turn to. I worked with SBA trying to open one here in the tri-cities but "it just wasn't in the budget" they said.


"it will consume your life" Well DUH that should be the exit door sign on any OBGYN door. It is a child, of course it will, believe me I have 3 (and 2 cats and 2 dogs) I have been consumed since January 19 2001.

October is Spina Bifida Awareness month. There are tons of ways to help. You can support the spina bifida association, you can sponsor someone at a local walk-n-stroll. You can find a business that supports or donates to Spina bifida. Let's 're-define spina bifida'


To those of you searching the internet right now, I hope you stumble on this blog.
A child WILL consume your life. A child with spina bifida may or may not require a little extra time. There are 100's of thousands of us that will gladly talk to you, help you, inform you. One thing is certain, you will love that child no less than your others and this child will touch your heart in a way that no one else can. Is it hard? absolutely, at times but being a parent of any child is hard.




TAGS: Spina bifida, doctors, child rearing, children, neural tube defect