Friday, October 1, 2010

Do you know what October is????

Do you know what October is??

October is beautiful weather here on the Central Coast.
October is all things fall.
October is count down to Halloween time.
But in our house, above all else,
October is Spina Bifida Awareness Month!!!

15 years ago, I had no clue what Spina Bifida was, even 12 years ago I was clueless. But about 11 years ago I began my education, and man what a trip it has been!

This year, for SB Awareness Month my heart is not for a cure (although that would be nice for future generations), nor is it really for treatments (although we all still need them) but my heart is for ACCEPTANCE! My heart is that these very special people be understood, accepted and embraced. Because to be brutally honest, this mommy is sick of the strange looks and the judgements! But I also know that in order for people to accept they need to understand ... so here starts my quest this October... bringing more people to a place of understanding!

So what IS Spina Bifida you ask? Well thank you for asking.

According to the CDC "Spina bifida is a major birth defect of a baby's spine. It is one of the most common, permanently disabling birth defects in the United States.

Spina bifida occurs within the first few weeks of pregnancy, often before a woman knows she is pregnant. It happens when the spine and back bones do not close all the way. When this happens, the spinal cord and back bones do not form as they should. A sac of fluid comes through an opening in the baby's back. Much of the time, part of the spinal cord is in this sac and it is damaged.

Most children born with spina bifida live full lives, though they often have lifelong disabilities and need many surgeries. Some of the problems that a person born with spina bifida might face include:

•Not being able to move lower parts of their body. (Some might need to use crutches, braces, or wheelchairs to get around.

•Loss of bowel and bladder control. (Some might have to wear protective clothing. Others learn new ways to empty their bladders and bowels.)

•Fluid building up and putting pressure on the brain (hydrocephalus), which needs to be fixed with an operation.

•Learning disabilities.

•Allergy to latex (a created material found in some rubber-type products such as balloons or hospital gloves).

All children born with spina bifida don't have the same needs. Some children have problems that are much more severe than others. Even so, with the right care, most of these children will grow up to lead full and productive lives." (to read more from the CDC on Spina Bifida go HERE)

The two things that strike me about Spina Bifida most, that most people just don't get are:
1."It is one of the most common, permanently disabling birth defects in the United States." There is no cure. There is no "getting over it". There is no light at the end of the tunnel when those with SB will be done with it.
2."All children born with Spina Bifida don't have the same needs. Some children have problems that are much more severe than others." It is different for everyone. Unique, and confusing for everyone.

And the thing I am personally struggling most with about Spina Bifida right now?
I have had to come to the conclusion that we are looking at some pretty major neurological damage, and there are things that I hoped we would "get over" that I am feeling less hopeful about. I am seeing that we are definitely on the much more sever side.  But more on that on another day :)

I hope you will check back often and expand your knowledge, understanding and acceptance of those with Spina Bifida, thus leading to your embracing them, and others that are unique like them :) But don't worry... I will still do regular blogging this month too :) Nothing like mixing it all up, right?

And the highest honor to me this month? SHARE that October is Spina Bifida Awareness Month, SHARE posts like with your friends and family (yes, you have my full permission to link to this or any of my posts), and help others to UNDERSTAND....