That ABR post will have to wait another day or two because today I’m mad as hell and I’m resorting to my favorite therapy–blogging.

By now, you have probably heard about a little girl named Amelia who was denied a life-saving transplant (from a family donor) because has been diagnosed “mentally retarded.”  If you haven’t heard the story, you can read her mother’s own words here although sadly, my description sums up most of it. The doctor’s reason behind denying the transplant was that Amelia had a poor quality of life.

There were a hundred things racing through my mind as I read this story–fear, disbelief, disgust–but the quality of life thing is what sticks in my craw. I am sick to death of other people looking at my child, or any child with disabilities, and determining what the “quality” of his life is. My son cannot walk or talk, but he smiles every day. He laughs easily. Throws temper tantrums like many four-year-olds, and he likes toys, television, and his iPad. He adores music and can recognize a song within a few notes and could from an incredibly young age. I began teaching him to read this summer, shortly before his fourth birthday, and I am slowly adding words to his vocabulary (in between bedrest, having babies, therapy, school, dinner, cleaning, and getting pregnant again).

He is LOVED. When Charlie was born sick and in the hospital, I felt like the whole world was praying for him. For four years he was the only child and the only grandchild on both sides of the family. He is doted upon and spoiled more than he should be–for crying out loud, I don’t have an iPad! At school he is greeted by a multitude of adults and children who have taken him into their hearts–at recess they actually have to shoo children away because a crowd gathers around him. Other students watch for him each morning to make sure he’s arrived on the school bus.

His life is RICH. Charlie has traveled internationally. He’s been to Disney World. He’s put his toes in the sand in Florida and chomped on chips and salsa in Texas. He’s eaten in some of New Orleans’ finest restaurants. He goes to outdoor concerts, rides horses, has his own TV, DVD player, and the aforementioned iPad. He has a bureau full of clothes, and ones waiting for him when grows into the next size. He has cuter shoes than I do. He has so many toys that we still have some in boxes waiting to be opened.

He is CARED FOR. His father and I talk regularly about his future. We think about where he will live as an adult. We have plans for how our house will be remodeled to suit him in the coming years. We have life insurance should we pass away too early to carry out all of our plans.  We have also been blessed with two other children and have a fourth on the way. We hope that they will help to care for Charlie when he is older–if he should need their help.

For years I taught children with a poor quality of life. These children could walk and talk like everyone else–they could read out loud and solve math problems.

But their lives were full of violence, loss, and poverty. I taught children who were all to familiar with drive-bys. I taught children who were freezing in their beds at night and then falling asleep in school the next day. I worked with girls who passed out in the hallways at school from malnutrition. I met children who would go days without seeing their parents. And those whose mothers forced them into gangs before they even started high school. I stood in houses with no beds and rat poison lining the rooms. I knew far too many children whose parents were children themselves.

THAT is a poor quality of life–not the inability to walk when the world is full of people willing to carry you. It is not the inability to speak when there’s an army there to advocate on your behalf.

The quality of life issue is just an excuse. It’s something people tell themselves when they do something abhorrent to people who can’t defend themselves. It’s a balm people allow to ease the pain of what they know is discrimination. It’s a falsehood and it’s time for it to stop.

My child’s life is beautiful.

My child’s life is valuable.

His worth cannot be measured.

I know I am not alone in my beliefs. Sunday Stilwell has put together a petition urging CHoP to reconsider their decision to not grant Amelia her life-saving transplant. You can sign that here. You can also let CHoP know how you feel on their Facebook page. The most important thing you can do (in my opinion) is let people know how you feel about this story. People with disabilities deserve the same medical treatment as everyone else. It’s time to speak up.

It doesn’t take more than a passing glance to notice that Louis and August are not identical. It took a couple of days to see their differences–slimy, bright pink newborns all kind of look the same–but sure enough, Louis is olive complected with dark hair and dark eyes and August is very fair with reddish hair and blue eyes.

Most people look at them and comment on how they don’t look alike, which is fine, but some people have some very odd responses. Here are my two favorites:

First, at least once a week, someone leans over my double stroller, looks at my two boys, and exclaims, “well, they can’t be twins!” Um. . . excuse me? I assume they’re saying this because the boys looks so different, or because they’re different sizes, but really. If they don’t look like they’re nine months apart, I’m not sure WHAT they think I’m carting around with me. I don’t know about you guys, but I’m certainly not borrowing an infant to take around with me, and even if I did, I wouldn’t buy a special stroller specifically for that purpose.

The other one that got me was when a woman peered into my stroller the other day. Keep in mind, I don’t actually invite people to stare at my children, but twins are just one step above circus freaks and people don’t even try to hide the fact that they’re coming over to ogle your children. So she looks over my two guys and say, “not identical, huh?” To which I reply, “not even a little bit!” And then she looks back at them and says, “well, that’s OK.” Ummmmm. . . what? Of course it’s OK! Most people’s kids don’t come as matching sets and they seem to do just fine. I don’t know about you guys, but I prayed at night that my children would be healthy–not that they look like each other. Sheesh!

I’m probably not alone when I say that many of my thoughts have been consumed by the scandal at Penn State. For those that live under a rock, an assistant football coach at Penn State has been accused of molesting eight young boys over the course of at least a decade. According to reports, many members of Penn State’s administration were aware of the abuse and failed to do anything to stop it. Most notable for the news sites, is that famous college football coach, Joe Paterno, knew and did nothing.

I read the Grand Jury report and the whole thing is shocking. Horrific, really, but what really gets me going is the angle that every single post and article on the topic is covering: football is bad. Everyone involved is bad and horrible and it’s all because of football that this man got away with it.

I mean, really?

Here’s why this bothers me: every community has pedophiles. They exist in small towns and large cities. They are everywhere. As part of my education degree, I had to attend a seminar on recognizing warning signs that another teacher might be abusing a student. What stood out to me the most was this: the teacher most-likely to have an inappropriate relationship with a student is one who has special privileges–coaches, band directors, and the like. So basically. . . anyone.

This is scary stuff and the media is painting it to be a big conspiracy between powerful men with access to untold resources. People are screaming about who should have told.

These things may be true, but the bigger truth is that every day people don’t tell, and THAT’s what we really need to be talking about. Why don’t people tell? What kinds of manipulation is used to prevent this abuse from being reported? What are the outward signs that this abuse may be going on? What is it about humans that makes us unwilling to believe this kind of thing occurs as much as it does?

The sad fact is that this topic makes most people so uncomfortable they don’t even know HOW to talk about it. The facts are that Sandusky was barred from an entire school district in 2008. An allegation of sexual assault was also reported to the police. A DA was assigned to investigate Sandusky in 1995 as well. I think there’s too much time between those incidents and the public being made aware of the situation. We have GOT to get better about talking about these things–we need to create a safe place to have these conversations.

Hopefully the whole sordid tale will remind us parents that we talk to our children about who is allowed to have access to their bodies and what they can do if someone tries to violate their innocence.

We also need to talk to each other. If someone gives us a bad feeling–follow up on it. Don’t be afraid to mention anything that gives you pause. I’m not saying we should start calling people child abusers if they give us a funny feeling, but keep our kids away from them? Absolutely. Tell our friends that they gives us the creeps for no particular reason? I think so. If nothing else, I hope this scandal shows us that we can’t expect someone else to speak up–it has to come from us.