Thursday, April 05, 2007

FADE INTO YOU




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.

21 comments:

Janet a.k.a. "Wonder Mom" said...

I love how you love your daughter. Very real and honest. And sweet as hell.

Slick said...

I know it has to be hard Elle...but it honestly sounds like you're doing one hell of a job.

You're doing right by your daughter...

MamaLee said...

You are such a good Mommy. Believe that.

Burg said...

Wow.

DariDonovan said...

Elle, I am always amazed by you and your posts. I am so happy you shared this. I have no doubt you are an AWESOME Mom.

Happy Easter to you and yours. There is a post at my blog explaining where I will be all weekend. My kiddo arrives tomorrow. Yahooooooooooo!

Jessica said...

Elle your the most amazing Mom, Friend,Woman I know!
Huggs

Kristy said...

Elle..you are truely amazing. Therea are so many other good things I could say right now but what it all comes down to is Amazing! Your beautiful girls are very blessed to have you for their mother.

Dustanne said...

You are doing a great job!!! I have worked with children and adult with Autism and to be a mother of one of those children, Kudos to you. Being there for her each day and night. You are doing what all mothers should do.
Your girls are beautiful, and it shows how much you love them.

Happy Easter to you and your family.

Slackermommy said...

Oh honey I so understand you. My olest has Tourette's, ADHD, anxiety, and OCD. I know what you mean about mourning the child they were and the child they are supposed to be. I've had people tell me that God only gives us what we can handle and it pisses me off. I don't want to handle it. But it is true. God knows I can't handle my kids getting sick or dying but that I can handle this. I don't want to but I got to and I know I can do it. Just like you. You're a great mommy and your doing a great job. It is sad that her twin won't have the relationship with Kierra but what a wonderful lesson about compassion.

Em said...

I taped the Oprah show...cause I just had a bad week and knew I was not in a place good enough to watch. But I know how it is...I mostly look at the good in Son16, but some days the grief will overwhelm me. I don't really the miss the kid he could have been...not any longer. But I grieve for what he will never have.

Lene said...

Elle-

I thought about you yesterday when I saw the beginning of Oprah. Unfortunately, I wasn't able to watch it - we were headed out the door. =( I really would like to watch the documentary that was made with all of those families. Was it through Autism Speaks?

You are a wonderful mom! Keep being who you are. ((HUGS))

Janis said...

Aww Elle...we should have watched it together..you could have taken a snowmobile over here and we could have cried together cause that's EXACTLY what I was doing watching the "sibling" part. I was bawling. You know that you are an INCREDIBLE Mommy and Kiera, Jenna and Karis are VERY lucky to have YOU for their Mommy.

That show was VERY eye opening and wonderful for other people to see a peek into the everyday lives of families that deal with autism. I say hurray Oprah...maybe this is another topic she can get more recognition for and get on the road for a cure!

Elle said...

I am a very lucky person to have so many wonderful people for support. Thank you so much for all your kind words. Honesty, it really made me feel great.

Twisted Cinderella said...

What a wonderful post. You truly let me see at least part of what it is like to have a child with Autism. Thank you. Your daughter is lucky to have you for a mother. She truly is.

Jacks said...

It's 1:30 am and here I am on the computer just browsing around and I fell in to your blog. I think I can go to sleep peacefully knowing that I know a woman out there who is a fantastic mother and is raising THREE beautiful daughters despite the trials - it just sort of makes the world seem like a good place when you think about it that way.

Jenny said...

I saw the Oprah show and thought it was very well done and eye-opening.

I think you are an incredible person and wonderful mother to have such love, honesty, patience and acceptance for all your children.

You're doing great...

Maria said...

You just have a way of sliding one foot in front of the other and doing it so gracefully that no one realizes how hard it must be at times.

Mom said...

I watched the special as well. Big Daddy's cousin is Autistic and she's been through so much. She's 19, graduating this year and attending her prom. Its amazing...

Elle, if I could be 1/2 the mom you are, I would be grateful. You rock!

Mom on Coffee said...

Oops, not sure how I logged out of blogger, but mom is me...

Lainey-Paney said...

I had no idea that one of your daughters is autistic.

I guess I just haven't been reading that long. It's not something that I would have missed.

In one of my grad school classes, we are studying autism & its affect on families. I missed the Oprah show because I work during the day... but I understand it when you say that it's just great to hear others say that they have the same thoughts & feelings that you do. It's very powerful.

And...not that my child has autism...but I do watch him & play with him, and hope he isn't one out of 150 to develop autism. It's completely CRAZY to me that they are completely normal for a period of time, and then just "turn inward." As a mom, that must be so hard to watch & endure. And I can only imagine how helpless you must feel.

Catwoman said...

Such a beautiful post Elle. You are an incredible person, incredibly strong and I don't think that's reduced at all when you grieve for the could have been's. My sister's baby was born with only one hand. And although she loves that child more fiercely than anything on Earth, I know that when she sees babies clapping or doing things that require two hands, she grieves a little again.