what is microcephaly, anyway?

What exactly is microcephaly? People asked me that all the time during the garage sale. I was shocked at first, but then realized that I probably wouldn't know either unless I had a reason to know...So, I explained it, over and over again. I like educating people, and helping them to understand that even though she is disabled, she is still very much a person and deserves to be here just as much as the next guy. You know? It saddens me to think that some people think that those "less than perfect" people don't deserve to live. I am less than perfect. So are you... Just because we can walk, and talk, and do all those mundane things we do, doesn't make us any more worthy of life.

Of course, I never went into that part of the conversation because no one suggested she shouldn't be alive. They were truly curious and concerned. I loved that. I wish I would have had opportunities to talk with parents of disabled children before I had my own, so I wouldn't have struggled so long with being comfortable around them. You realize that parent's of special children are just people, like you...and that the children are just children. Just different.

So, in that light, I realize many of you probably don't know what it is either, unless you read through each and every archive. Which I don't recommend, because, BORING....LOL.

Microcephaly means "small head". Small head comes from small brain. One that isn't growing right for whatever reason. Some children can have a small case of micro, meaning their head circumference is somewhat smaller than normal, and they can be delayed but still do many things like walk and talk etc. Others can be WAY off the curve, be way under what they are supposed to be for their age and be severely delayed. That is where Rachel is. She is functional, but infant like. She may never get past infant stage. I pray daily that she does, but the reality of the situation is that she may never progress much further and while she doesn't know the difference, we do. Still others have micro and can be pretty much non functional. They can't eat on their own, and require feeding tubes etc. They don't communicate at all, and can be locked in their own little world. I am very aware that Rachel could be much worse, but also aware that she could be much better.

Microcephaly is a hard diagnosis to accept. Many things cause it, and it can't be fixed. You have to take things day by day and just let the child develop at their own rate. That is why I want to go to this conference. To meet other families with children like her that have bridged some gaps I haven't even come close to crossing. To help a new mommy of a newly diagnosed baby to know that it will be hard, but that she can do it. To learn about new developmental tools that can help her brain learn more, even if only a small amount, because a little learning is better than none. To let my kids be able to meet other children who deal with this daily in their own lives. Finally, just to get away from the normal day to day life here, and shake things up a bit by traveling and living in close quarters for a couple of weeks. This will either kill us all, or make us closer, and I truly think we will get closer. We are family, and families stick together. In normal and not so normal fashions.