Friday, January 13, 2012


I am not likely to get much sleep tonight. I read a blog entry about a child denied a life-saving kidney transplant- from a family donor- because she is "mentally retarded" and "brain damaged."

That is a nightmare I have all too often: that Joey might be denied medical care because someone deems him to have "low quality of life" because he is autistic. It is a very real and near fear. After all, we have to fight- often fight hard- for people to respect his right to an education. We had insurance that denied his right to certain therapies (fortunately, JoeyAndyDad got a new job with new insurance!). In other words, we fight every day because there are people that consider Joey to be less than human, a waste of resources, a drain on the "system." Because he has a disability, there really are people in this world who consider him of less worth than... well, themselves.

I spent the afternoon in Joey's class today. It is always an experience that blends hope, amazement, pride, joy, love, and depression in measures, and comes out as something that makes me think hard about what life means, and its amazing value. I am not at liberty to divulge the variety of issues and the range of stories behind the lives of Joey's classmates, but I can tell you that each and every one of them is an incredible human being, doing things that are nothing short of miraculous. And many of the stories are, at the same time, desperately heartbreaking. And some are all the more heartbreaking because there are people who think these kids are, basically, junk to be tossed away. That anyone could look at any of these children and not see how utterly amazing they are in the face of their challenges and because of their amazing talents is just... mind-boggling. And incredibly sad. It even makes me angry to know what some of these kids go through every day, because there are people in this world who think they have no value.

That someone might deny any one of these children the right to live is something we should all actively, aggressively, and positively fight, every day, every minute. Such denial is a shameful manifestation of evil in this world. It is up to us to fight it with everything we have.

We live in a country that recognizes everyone's right to life, liberty, and the pursuit of happiness. Nothing in the Bill of Rights says we have to take an IQ test to have those rights.

Wednesday, January 11, 2012

All taken care of

One of the strangest things people say to me when we talk about Joey is "God has a special place for you in heaven!" or the now-more-common, "God will reward you!" No, really, That's just... odd to me.

Now, I know some folks get very offended by such statements. I don't. I understand that the person means to be friendly, comforting, and sympathetic to my role as a parent of a child with special needs. Sometimes it is hard to have a conversation with someone, and hear about hard days, and know what to say to a world that is totally outside your experience as a person or a parent.

I used to say "thank you" and move on. Now I have a new answer.

"He already has! He's given me my boys!" And my life. And my husband. And my mom. And my friends. And...

People seriously need to get into the groove of thinking about my kids as the lovely, beautiful people they are, as the precious gifts they are- and not just to me, but to the whole world. Each and every one of us- we're gifts. We have the potential to do so much, each and every one. It is up to us to do our best to show our gratitude by helping the world be the wonderful, beautiful place it can be.

So that place in heaven? All taken care of. Right here, right now. Thank you.