"I hope she dies before me"

Let me begin with an apology...I have not abandoned my blog, but am away at a conference, and the room I'm in does not have an internet connection (In today's age can you even believe it?). So today has been my first opportunity to make it to a "hot zone"

On Sunday morning I got up and turned on the TV as I sipped my coffee before heading to church. A movie I had not seen before was on, "Autism: The Musical." I have always meant to see it but never had the chance. I can't say I was really watching it as I had other things I needed to do, but paid attention to what people were saying in the film as I went about my business, fully intending to catch the movie in it's entirety another time. Then I heard a mother talk about her daughter. She spoke about how people don't see her value, about what needs to happen so that people will see her value, I was about to stand up and shout "Amen!" when her next sentence stopped me in my tracks. She said "I hope she dies before I do."

I have heard words like these before, I have actually seen elderly parents at their son's funeral grieving, but relieved because now they didn't have to worry. These used to be sentiments I could not understand. When I heard parents of the people I worked with say these things, in my mind it was monstrous. Oh how I have grown since then. Parents who say this don't do so because they don't respect their child or their right to live, they don't say It because they are tired and want a break, they don't say it because they are monsters. They say it because they see the world, cold, cruel and unforgiving and are gripped with the fear that after they are gone there will be no one else to support, protect, love, advocate...

Most parents can't picture a day when they might feel this way. I myself think of my children's future and am filled with hope. I speculate that after I am long gone they will carry on some family traditions, pass on some of my spunk, they will be successful and loved and live big lives full of love and adventure. Whatever challenges my kids face now or when I am gone, they are not living in a world that doesn't accept them, value them, or see them as full human beings. Yes, it is difficult for many of us to imagine wishing our children dead before us, it seems unnatural and out of the natural order. While the parents who do have these thoughts about their children with disabilities are loving parents too, the rest of the world doesn't facilitate ease of mind for these parents. I can not pretend to know this fear, I can not pretend to completely understand, but I have learned that I can not judge. I have also learned that I and others need to keep working to change the world, so that someday no parent has to wish their child's end might come before their own!