A look through our eyes

I more then often having my feeling bad days. Today was exceptionally great.
 I will be working with a non profit organization for Schizencephaly. I am so greatfull to be a part of it. Jesse and I had thought about doing the same, but I would rather work together with someone instead of bumping heads and possible conflict.
 Since receiving her diagnosis, I battled with myself of "why me." Why is it that I done all I could and something was still wrong. Why is it some people shouldn't even have kids, and have "typical" babies. Now I am starting to realize why she chose me. Its almost an insult to her to even think "why me". I couldn't ask for a more perfect baby. And I love her more then anything and wouldn't trade her for the world. I am still scared for her of course, but I will do anything for her she needs. I will take the time to care for her and work with her. I will fight to give the world a better understanding, doctors and society. Where as most parents wouldn't do this. Or the people I am referring to anyway.
 Being a parent of a special needs child completely changes you. Or at least it did for me. It makes you more patient and more defensive and intolerable at the same time. I have all the patience in the world for her, I have no tolerance for ignorant people. I will be the first to snap if someone is being ignorant to a special needs person, I correct people when they use the word "retarded" openly or think its funny to joke about " the short bus" or similar remarks. I will speak up if someone is complaining about their child being out of hand or they talk to much, ect. I just wish people could step back and see that there are families where our kids arnt able to do these things ( walk, talk, ect ) and be thankful for what they have. I will never take anything she does for granite. But I guess thats not an outlook you have unless you were in my shoes.
 A few things WE may see differently:
   There was a thread going around about how the cartoon Rugrats really happend. Heres a line;

 "he had a brain hemerage, which resulted in a deformation, as he grew up his damage only became more evident, by the time he was 9 in All Grown Up! He lived as an outcast, being ridiculed for his weirdness, and retardation, the immense guilt over this is what led to her drug use"


 One cause for my daughters diagnosis is a stroke, or brain hemerage. Schizencephaly is a brain malformation. Most will, have a form or retardation. And we are scared to death of our children being ridiculed. But thank you world for making a joke out of it.

Feeding tube diet appeals to brides-to-be | abc7.com

 Women who think its a good way to lose weight, sticking a feeding tube up there nose to lose weight. A large majority of those affected by Schiz needs g-tubes to survive. But thank you world for making it a new fashion statement and a lazy way to lose weight as we struggle to keep our kids healthy and keep food in their stomachs to survive.

I realize I wouldn't had giving this a second thought if it weren't for Ari, but maybe someone does need to step up and say how wrong it is and there are people being hurt by it.