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Wednesday, November 7, 2012

The parts of life Janey will be spared

I'll never be paternalistic enough to say I am glad that there are parts of life Janey is lucky to miss.  It's not lucky to not get to experience all life has to offer.  However, there are trade-offs involved in not really being aware to a large extent of the world around you.  There are pains that Janey probably won't feel in life.  No mother wants pain for their children, of any kind, although they are part of a full life.  So in a tiny way, I'm glad that she is unaware enough so that while she can't totally participate in many of life's events, she also doesn't have to feel some of the deep pains life brings.

What made me think of all this is the election.  I am not very political, but my older son is.  He was thrilled to vote for the first time, and quite happy with the results, but that will not always be the case in his life.  He will feel the frustration and sadness that the world doesn't share his deeply held views.  Janey has no awareness of politics in any way.  Last night I was trying to get her to say "Barack Obama" and "Mitt Romney", why I am not sure, just because those names were out there a lot.  She tried a little, but I realized it was a silly game.  She doesn't know they are people, she doesn't care.

Then there's the social world of girls.  Girls are cruel, often.  I know that.  I was a girl.  Girls are far crueler than boys mentally.  Freddy has seen that, and is shocked sometimes at what the girls around him do to each other.  I think about 7th grade, for every girl out there.  It's hell.  You are judged on every word you say, every action you take, and there are always mean girls, waiting to take you down.  Even if you are one of the mean girls, you know you sit uneasily on the throne, and your ladies in waiting might turn on you at any point.  It's a scary, scarring social order.  Janey won't have that.  If she is teased or excluded, she won't notice.  If she is ignored, she won't care.  She lives in her own world, which is apart from that intricate and often cruel world of girl friendships and enemies.

Janey is sad a lot, of course, but I would not say she's ever worried.  Worry has consumed huge parts of my own life, but worry takes awareness of the future, which Janey has very little of.  She vaguely knows we go to school each day, that sleep follows being awake, that there is supper and then dessert, or hairbrushing and hairbrushing being over.  But she doesn't lie awake nights worrying.  She doesn't have the brain setup to do so.  She might be scared, in the moment, or sad, or angry, but worry?  No.

Most all of us have things we want.  I want a computer that would run a game I wish I could play, a better house, money to not worry about bills, a car that I know will last a while.  The boys want better guitars, more video game systems, snazzier clothes.  Tony wants a Kindle, a Fiat, a pinball machine.  There aren't consuming wants, and we know we won't get a lot of these things, but the wanting of material things is a part of our life.  Janey doesn't have that.  She is not aware of the world of items out there she could want.  At times I've taken her to a toy store, and offered to get her a toy.  She doesn't get that.  She doesn't see things and think "If only I could have that!"  She is free from that kind of wanting.

In a second, I would reverse all this if I could.  I would give Janey the painful, regular life most of us lead.  It's worth it---I know that.  But I can't reverse it, and so, at times, I do think that there are compensations.  Maybe I have to think that, to keep from despair.  But be that as it may, I think of a life without worry, without coveting, without teasing or exclusion, without politics.  It's hard for me to picture, but it's Janey's life, for better or worse.

1 comment:

Jess said...

Very thought provoking post. As always you have a way of putting into black and white what you think and feel about your daughter and her disability. It's always moving for me to read. And refreshing.