Sunday, December 27, 2009

An old post about my best Son

*** This blog was originally written in another blog, I no longer use that blog. I wanted to keep it for my own records/journal. I wrote this 10 months ago***

There are so many things that I could write about. So many things that I am grateful for. But today, in my silent house, all I can seem to think about is my Son. Lukie. Lukapotamus. L. Luke-a. Bud. Sometimes Prince Charming.

I was looking through my side table drawer last night and I came across a journal I use to keep. Much like this blog it is something once frequently visited. Life got busy, other things became the priority until, eventually the journal had been closed for good.. It just so happened that these pages were filled at a time of great struggles for me. It started about the time that Luke was diagnosed with AS, a very emotional one for our Family. Not because of the official pages hand-written by a Pediatric Neurologist stating the words. And not because those words have changed our lives. The reason that was such a trying time for me was because I was feeling as though I was a failure. I could not get through to my Son. He was often angry and upset. There were days that I would pray he would sleep a little longer, only because I did not know what to do with him many of his waking hours. Not proud thoughts for a Mother.

I was going through entry after entry. Remembering my struggles with this boy. Recalling all of the times I would just have to put him in his room to scream because there was nothing else to be done. I avoided going out in public with him. I had constant red scabs from angry encounters with his fingernails. He would pull my hair sometimes in fits of rage. Yes, it was a very trying time. I wondered what Heavenly Father was thinking sending me this boy. I could clearly do nothing right. I was obviously loosing. Failing and feeling pretty low. Embarrassingly, my greatest desire back thenwas for him to be "normal".. whatever that was. I constantly compared him to other boys his age and couldn't help but to feel sorrow. I envied the ease I saw in their days. And wondered what life would be like if Luke could understand the way I saw his friends grasping.

At that time most people never knew how bad things would get. How dark many of my days were. Nobody wants people to know that they have a child who is out of control. No one wants others to pity them because of their Son's short-comings.. I only wanted people to see the best parts of Luke. To know of his love, his honesty and sensitivity. How incredibly smart he was and how infectious his laugh was. There were good days. Back then they much less frequently but, when they came, they were magical. On those days I would lay in my bed at night wondering what I did differently. What I did that was right that day. What food's did he eat? I spent so much time waiting for things to turn or planning my day to avoid potential hazards that I could almost never fully enjoy them though. It was a wonder to me that, for many, those were constant, normal days. I couldn't imagine.

Our days were spent preparing ourselves for the next melt-down. I would avoid certain isles in the Grocery Store. I would be home at certain times, with no variables, for naps and bed times. My life was spent looking around the next corner. And it was physically and emotionally exhausting!!!

The reason why I bring these things out is not to feel sorry for myself. Or for Luke. Its to rejoice. The path that we took was one of hard work, consistencies and hope. I knew that I would do anything for Luke that I could do in order to help him come out. The real him. Behind those often glazed over eyes was my boy. The one who I have the privilege of being with everyday. He is an absolute joy. Watching him work so hard over the last couple of years has been so humbling. He amazes everyone with whom he's ever worked with.

In his last IEP, as he now no longer even qualifies for services, the head of the department spoke of Luke. She said that in her 20 years of working with children of various levels in the Special Education Department she had never seen anything like it. She stated that she had never witnessed so much change in one person before. That most people would probably never believe that his first IEP was even the same boy. I cried.

So now as I type this I cry again. I am so proud of this special little boy of ours. I am so grateful that Heavenly Father chose me to be his Mother. I cry because I get to see this tremendous spirit of his battle out the ghosts in his head, and to defeat them. He is strong, he is valiant. He is a fighter and he is wise. I can not tell you how much Luke has changed me. I value and embrace every good day, every smile and conversation. He has gone from being one of my greatest trials to my greatest joys. I have loved serving him and helping him through this part of his journey. He is a miracle that I have been blessed to watch unfold. I see now how lucky I really am. And I wouldn't change the past for anything. It has gotten us to where and who we are today.

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