Saturday, December 17, 2005

I Just Want You To Know Who I AM!!

A friend asked me today, why do you blog? With everything going on in your life, when do you find the time to blog? And I thought about it and the truth is...I don't have the time but I make the time.

1) It helps me. It allows me to sit down and throw my thoughts into written form. It allows me to just rant and rave and it's as if once its logged into the blogosphere....I can let it go (or at least attempt to let it go).

2) I find it very relaxing. I enjoy unwinding and writing in the blog.

3) I hope that I can help other people. When my daugther got sick, I don't know what I would have done without the internet. I had answers within minutes, I knew what the road might be based upon what others were experiencing.

Now I always point out to people, be careful with the internet. Remember, the worse case scenerios and those that are still suffering are the ones who are still on the forums. I haven't gone to the Infantile Spasms forum in years since Brittany has outgrown the Infantile Spasms. So, you move on to other forums. In fact, at the beginner of the year, I am making a note to go back to the Infantile Spasms Forum. To see if there is anyone I can help there!! First New Years Resolution!

So where did this thought process come from? I was going to blog about being Santa and about being sick (that's why I haven't been around--nothing serious--just a bad cold).

By now if you have a music player, you will see a video playing here and hear the song I.R.I.S. by the Goo Goo Dolls. I was looking for some music and I came across this song. This song came out when my daughter was first diagnosed and they put her on steroids. As I told you, she was like a zombie, she didn't even know who I was. And the first three months, I walked around in a daze. I remember hearing this song riding back from the hospital one night to try and get some sleep. I just cried the whole way and for months the words of this song would tear me apart.

Well, the good news after such a struggle, this song brings such comfort to me. Why? Because she has come so far. She is so much better than I had feared and I have come so far and have accepted her for who she is. So yes, I feel the pain from that night that I was driving. But I also feel how far we have come since that night when I thought (and truthfully wished) that the world had ended!

Yes, it's been 7 years now, since those days that the world seemed to end. But you know what? It didn't. So while I am sharing this in hopes that you will see one mother who has survived and even has become a better person due to her daughter's disability---I know it is still very hard. But take each minute for minute and you will become stronger!

I.R.I,S,-Goo Goo Dolls
"And you can't fight the tears that ain't coming,
The moment of truth in your lies,
When everything feels like the movies,
Yeah, you'd bleed to know you are alive

And I don't want the world to see me,
Cause I don't think they'd understand,
When everything is made to be broken
I JUST WANT YOU TO KNOW WHO I AM!!"

Thursday, December 01, 2005

The Non Disabled Sibling!


Oh yes! My son has got it all figured out. It took him awhile but he finally figured out how to work his sister's disabilities to his advantage. Yes, we feel guilty and we certainly overcompensate in many ways since when Brittany was younger we were in hospitals all the time.

Then Jessica comes along and we are again faced with another child who needs attention. So Michael got a lot of things that I normally would have been against. I was always brought up that you have to work for things. Things don't come easy. But if you work at it, it can be yours! Skies the limits. (Probably that is why it was so difficult for me to accept that I couldnt' help my girls --but that is a totally other blog entry).

Anyway, went to teacher's conferences tonight and everybody loves Michael. He is such a warm and caring kid. Now I agree with that. However, he has been late to science (first period) and I need the teacher to back me up with discipline. Problem is that she sat through the speech I give--- welcome to my world- a perspective a parent with a child who has a disability. So she lets Michael get away with murder and it's been hell in my home in the mornings. Fighting with him to get ready on time.

The Social Worker is also great. But she also sat through my speech and understands our home environment and she also loves Michael. So once again, he gets away with it. Three weeks ago, the Asst. Prinicipal stepped in (thankfully she didn't sit through my speech) and she threatened to give him detention everytime he is late. Guess what?

My life has turned around!!! Michael has been getting up and going to school. His school work also improved. Today they told me he was slippping a little (okay B's instead of A's) and the last three weeks, they've seen him pulling high A's and extra credit. All I care about is that he works to his potential and I think he finally is. Hooray!!

So the moral of this story. As parents, we all have a tendency to feel guilty about things and we may try to make things better by overcompensating. Obviously the speech I give left a huge impression on these teachers but also left them too understanding to his shortcomings.(Don't get me wrong, I think that every teacher should attend a workshop like mine--next entry will be about my workshop). But the child who does not have the disability needs to be treated with discipline and love--not guilt feelings.