Friday, December 2, 2011

What is Spina Bifida?

Hi everyone, 

This post I should have posted along time ago but for some reason I wasn't sure on how to write it.. Many of you know I was born with Spina Bifida with hydrocephalus. I wanted to touch base with exactly want that means. Here is some information I got off of

"Spina bifida (Latin:"split spine") is a developmental congenital disorder caused by the incomplete closing of the embryonic neural tube. Some vertebrae overlying the spinal cord are not fully formed and remain unfused and open. If the opening is large enough, this allows a portion of the spinal cord to protrude through the opening in the bones. There may or may not be a fluid-filled sac surrounding the spinal cord. Other neural tube defects include anencephaly, a condition in which the portion of the neural tube which will become the cerebrum does not close, and encephalocele, which results when other parts of the brain remain unfused.

Spina bifida malformations fall into three categories: spina bifida occulta, spina bifida cystica (myelomeningocele), and meningocele. The most common location of the malformations is the lumbar and sacral areas. Myelomeningocele is the most significant form and it is this that leads to disability in most affected individuals. The terms spina bifida and myelomeningocele are usually used interchangeably."

OK, Big words I know but basically it means when I was developing in my mom part of my spine was exposed and got damaged. I have Spina Bifida cystica (Myelomeningcele) L4. I have spotty feeling from my knees down and no feeling in my feet, I cant move my feet at all. That is why I wear leg braces to help my balance otherwise I'm so wobbly its not really funny.. I have no control with the bladder or bowel so I have to self cath and have to be on a bowel program. This is the hardest part of this whole thing for me anyhow.  I also have hydrocephalus which means fluid on the brain so when I had my first surgery a few hours old to put in a shunt which is a tube like drain that extends from my head to my stomach. I have had surgeries to unclog this or replace it. I have to watch if I get a bad headache or a few other symptoms I have to get it checked.

What people don't know is with a disability comes alot of challenges. The bathroom situation can be the hardest but also the little things also can be the hardest thing. To see other kids jump rope and in your heart you want to try but don't want to be the laughing stock of the playground or to have disappear from class to use the bathroom can be hard to one self esteem. I live in such a small town that no one knew what Spina Bifida was or what to think of it.  For years I was always the girl pick last for everything whether it was gym class (which I hated the most) or to be partners for anything. I grow accustom to being the odd ball out. It wasn't till I attended a youth rally that I learned that there are people like me. I met two girls from Hawaii that have Spina Bifida and going through some of the things I have been going through. They have become two of my best friends even though they live so far away.  I also have a friend that goes to the same church camp I attend that has spina bifida too so she and i can relate to alot of things.

Well if you have any questions, I am here to ask whatever you may need. I use to be embarrassed to answer questions about my disability. I actually thought when  I was little that it would go away if I didn't think or talk about it. Now I know I was dead wrong about that. It never going away I just gonna work on living with it.

Thank you for reading this! I appreciate it so much! Love you all!! TTFN


  1. I'm glad that you aren't embarrassed to speak of the disability you have. I have been away for so long that I forgot you even had one. You are always smiling and happy on FB that it never crossed my mind. You are an inspiration!! Keep being you, because that's what makes the world a better place. :) Everyone has issues, whether physical, mental, or emotional. So don't ever be embarrassed over anything. You are great just the way you are!!

  2. See I told you that you are an inspiration. Even Matt thinks so. I'm glad you are willing to talk about it. I think many times when kids don't understand something they become afraid of it. Not you, the disability.
    Love you bunches.