Thursday, March 15, 2012

ya FEEL me?

I am lucky enough to be working with Amy Hummell and Autism Speaks (ill write more about that in another post) and was able to attend an meeting at SARRC and had the opportunity to listen to the amazing Clara Lajonchere, Ph.D., (Vice President of Clinical Programs, Autism Speaks) and Christopher J. Smith Ph.D. (Vice President/Research Director, SARRC). I sat there for a few hours listening to all the new research studies and advances and findings that are being made in the Autism community.

I could have sat there for days listening.
Learning.
I was enthralled and taking notes and soaking up every single word.
I didn't want to miss a thing.

My point is, as I sat there in a room full of other parents living with autism in their homes, I finally realized something. This is my life.

I was joking with haleigh brownlee recently about when you have those surreal moments and you look at yourself and think, "how did I get here? where did I take a wrong turn? how did my life end up like this?"

I don't necessarily feel this way about Autism, but the realization I had during this meeting was,

"This is my life now." For the rest of my life I will be attending these meetings, I will constantly be searching for more information.

I am starving for information.

I hope this doesn't sound negative. I DO NOT think of my life negativly, AT ALL.

It is just not at all what I imagined when I was pregnant.
Its never what anyone imagines.

NO ONE dreams that they will one day be filling their days with research, therapies after therapies, dealing with learning how to live with autism and striving to help your child live happily and most of all comfortably.

But the reality is, that IS my life.

Its been almost year since autism has entered our lives and it JUST hit me today

During that meeting, it took everything in me to keep from crying.
Not out of sadness. but out of relief.

I have felt alone. So alone.

NO ONE, no matter how hard their sweet little hearts try (I am being sincere, I seriously appreciate all our family and friends and their efforts to love and understand) can not relate or try to understand what we go through living with autism in our lives.

Today for the first time I was in a room full of people who knew EXACTLY how I felt.

I felt understood. i FELT relief. i felt HOPE.

For the first time in a LONG time I just FELT something other than jealousy, guilt, anger, and sadness.

I finally belonged. I felt empowered, brave, and proud. i felt NORMAL. awwwh to feel NORMAL again, I can't begin to tell you how it felt.

I met some amazing women who I can not wait to get to know and learn from.

For the first time in a LONG time, I feel like I will be ok. It does NOT make those hard (and i mean HARD) days, like today any easier, but it gives me hope.




Post Script...

i just want to thank my mom. today was one of the hardest days i have had since recker was diagnosed. today was one of those days that I begged the question WHY ME, WHY RECKER, WHY US? one of those days where i was selfish and whined that ITS NOT FAIR. Its just NOT FAIR. one of those days when i didn't know how to i was going to get through the day. and my mom LET ME. she let me sob. she sat there and cried with me and didn't try to tell me that i was going to be fine. she just let me feel how i was feeling and that is exactly what i needed. i just needed someone to listen. i love you.


1 comment:

  1. I read this before but after our conversation on Facebook yesterday I wanted to comment. How great that you were able to feel those feelings of normalcy. I rarely feel that way either. I wanted to comfort you by saying that the first couple years are always tough after diagnosis. But who am I kidding. We are almost two and half years since Brody was dignosed (and he was later at showing the signs) and I constantly go in and out of feeling empowered and resigned to do what I need to do to help Brody. Then the next day I am mad, bitter and sad that autism is our life. I guess I kept thinking one of these days I will grow to accept what hand we have been dealt. Right now for me the lack of acceptance and kept me motivated to strive to get him to make improvements and progress. Not that it is mentally healthy not to accept. For now I guess the heartache is deep and all I am doing is slowly climbing out of the hole of self-pity. Some days I think I am almost out of the hole. Those days of crying and self-pity are needed and normal for us. The more I am able to relate to others, read and hear from those other parents the less self-pity I feel.

    I barely know you and we have actually never met. Yet, I know from having the life that is all autism, you are an an amazing mom. You are so aware, so involved and just so there in the thick of things with Recker. That great and not easy to do day in and day out. I hope you realize that Recker is lucky to have you as a mother and his greatest advocate!!

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