It's not often I get very emotional about my daughter's disorder. Most of the time I want to focus on the good; all the positive progress she has made. I think that the more I hold onto the negative stuff; the more I hold her back because I'm letting my own personal upset shadow all her accomplishments. I've learned to grow a thick skin; because I knew if I didn't it would tear me down day by day and that I needed to be strong for my kid, and my family. Doesn't mean I don't break down time to time. What human could block it out completely?
Oprah had her special on the faces of Autism today. I wasn't sure if I wanted to watch it or not. I mean I KNOW what it is to be a family living with autism. But when the time came, I decided to turn on the television and watch it. How funny that Kierra would come upstairs and start screaming at me because she wanted me to put Peter Pan on. I told her no and she screamed at me hysterically for about 25 minutes. Good thing that t.v. has a heck of a volume on it.
It amazes me how much it hit a nerve. I heard parents talking about things, saying things I've said myself or even thought. In one way, it makes me feel better to know people out there understand what it is like. It helps especially when there is always those who judge us as parent, my child - for things that are out of our control. It makes me thankful that all the people that watched that show today might have opened their eyes just a little to learn something. It washes away so much ignorance in the world. Should people really be so ignorant to a disorder that affects 1 in 150 children, or that every 20 mintues another child is diagnosed with autism?
When Kierra finally calmed down she layed on the couch with me and watched. I wondered if she understood what they were talking about. If she understood that was her; that all these people were discussing the same disorder that won't let go of her. I honestly don't know if she even knows what Autism is? Honestly it hadn't really occured to me to tell her she has it. I've only recently started telling her twin about it, because she was starting to ask me questions. Watching siblings talk about their autistic sibbling - that was what got me the most. At times I started to cry; not only because I was hearing parents heart-wrenching accounts of when they first realized something was wrong, or how their family is today. But because my daughters have been denied a relationship they were entitled to have with Kierra. Jenna and Kierra aren't like twin sisters; and it's sad because when they were babies, they really were. Jenna lost her twin-ness; but Kierra lost it too.
Today I realized I was still secretly asking myself why my daughter had to be one of those 150 kids. Why did she have to be one of the kids that seemingly was perfect until she was 1 and 1/2 years old; and then it all mysteriously vanished? Don't get me wrong: I have accepted that she is autistic. I know what I need to do now to help her. But it doesn't mean I still don't grieve for the child I thought I once had. I saw my perfect girl fade into herself and I haven't seen her since. It doesn't make her any less, or make my love for her fleeting. It just seems unfathomable that any parent should have their child stolen from them in such a way; and not know where to find them.
All I can do is look at that beautiful smile and I know that my girl is still in there somewhere. All I can do is try to coax her out day by day. I know I can't fix her; but you could never tell any mother to ever give up when her child amazes her everyday and continues to have more faith in herself than possibly imaginable.