When dear son was born with special needs, I never imagined how different it would be. People are competitive and it starts at birth. Everyone thinks that their kid is the smartest and they proceed to let you and the world know that Johnny sat up at two days, walked at one week, etc, etc. It’s not only that their kid is smart or talented, but that they are 100% responsible for this. They tell you about their child like an Apple Computer product introduction where they tell you about the new device which is always smaller, faster, lighter than the previous model. However in this case, these parents take full responsibility for their child’s achievements. As the parent of a special needs, it’s a game you will never win.
I remember distinctly being in the supermarket with dear son when he was young. A mother and with a small baby had him sitting up in the shopping cart. She looked at dear son lying in his carrier, then looked at me, and then smugly at her son in the shopping cart and then commented on how great it was that he was sitting up. I was thinking to myself that it wasn’t a fair playing field but she would never know. The thought of a child not being able to do something would have been totally outside the box for her.
The game goes on as the children grow older. Recently, a woman was complaining at work over the cost to send her brilliant son to an Ivy League School. The tragedy, according to her, was that her and her husband had only saved enough money to send him to a state college, never dreaming that he would be attending an Ivy League School. I couldn’t help but envy that while wondering if dear son would ever sit up again.
So you can imagine my surprise when I received this e-mail from a friend of mine. To give you some perspective, my friend is the mother of a special needs child as well as two other children. Her daughter, has sacral agenesis and/or caudal regression as it is sometimes called. She has microcephaly, hearing loss, partial cleft palate, is severely retarded and has no bowel or bladder control. She also has scoliosis and kyphosis and wears a body brace. She is twelve years old and weighs 40 pounds. She has two other children, a fourteen year old son and seven year old daughter.
Recently, she had told me her older son. He was invited to a math competition and she told me about the conversation she had with him prior to going into the competition. I proceeded to inquire, in a follow up e-mail, as to the outcome of the competition. I told her that she must be proud of him, because he is so smart. She gave me the results of the competition and told me how excited he was and how happy she was for him. Then she said the most amazing thing.
“As far as his smarts go, I am not really proud about it. He was born that way, you know? Just like my daughter was born the way she is. I figure it was the roll of the dice. I'm much prouder of his kindness and things like that. I just like him as a person and that's the best!”
Yes, that is the best.
A midwest mom shares and reflects on the love for her Dear Son Matthew and the challenges of everyday life with a severely disabled young man. In addition, she shares her love for decorating, organizing and keeping a clean home. ©2006-2024. All Rights Reserved.
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1 comment:
wow I will always remember this. Beautiful words.
So much of what we do is competitive and wanting our children to be high achievers and outstanding ... not to be loved for who they are and all the unique qualities like patience, kindness and so on.
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