Friday, March 23, 2007

Bad Day At Black Rock

It is for us to pray not for tasks equal to our powers, but for powers equal to our tasks, to go forward with a great desire forever beating at the door of our hearts as we travel toward our distant goal.
Helen Keller

So many times when I have talked to other parents of children with disabilities, I see complete and utter exhaustion in their eyes. The sparkle that indicated their willingness to do battle for their child was barely flickering anymore. There was also a sadness there, and the tendency to lower their head and look toward the ground when discussing what was going on with their child. They had been worn down and worn out. They didn’t love their children any less or stop believing in them, but they were tired, very, very tired. When I looked in the mirror this morning, really looked into my own eyes, I saw those same things.

For a parent of a child with a disability (or multiple children, in my case), every day brings battles. Carefree days of just enjoying your family, with no expectations, no learning activities, no concerns over reinforcing activities of daily living, are few and far between. Every waking minute of every day, and usually some of the so-called sleep minutes of the day are spent strategizing. The questions are many and the answers are few.

  • How am I going to convince the school system that my child is not progressing and they need to do something different?
  • How many more times am I going to have to try and explain exactly how my child’s disabilities affect their daily life?
  • How many more insurance battles will I have to fight for just the most basic of needs?
  • How many more times will I have to explain to a doctor’s office staff why I need a phone call from the doctor immediately?
  • How many more times will I have to explain to strangers why my child looks differently and acts differently? How many more times will I have to smile and act like it doesn’t bother me when a stranger just stares?
  • How many more therapists will I have to ‘educate’ on the best way to approach working with my child?
  • Etc., Etc., Etc.

I’m also tired of hearing what a wonderful person I must be for wanting children with disabilities, what an ‘angel’ I am, blah, blah blah. I am NOT anything special. I am a mother who just wants to enjoy life with her children. I am a mother who wants her children to have those things that are their rights to have, and a few of those things they want to have. I want what is described by many as a ‘normal’ life. I want to play and rest and enjoy, not stress, obsess and fight. I am so tired of all the battles.

I won’t give up – ever. I will fight for my children, and for other children with disabilities, until the last breath is gone from my body. But my body, my heart, my mind and my soul are so very, very tired. My children deserve better and so do I.

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