Friday, January 13, 2012

Open letter to the Medical Director, Kidney Transplant Team, CHOP

I read this post and I had a visceral response. I amended a post I wrote a few months ago and responded to what I see as a complete injustice.

Open letter to the Medical Director, Kidney Transplant Team, CHOP:

Dr. Baluarte,

I am certain that you are excellent at what you do. You did not obtain your position without stellar skills. I am wondering, though, if you remember why you became a doctor in the first place. Was it because you wanted to help people? I'm sure that was a lot of it. I'm also sure that you have helped many, many people. And yet, there are some people you deem unworthy of a life saving procedure based on what you and your team perceive to be "low quality of life."

At one time you pledged to have unconditional positive regard for your patients, to not discriminate based on who a person is. 

And now you are. 

No one can truly appreciate another's life experience. Who should decide whose life is valuable?

The Angelina Jolies of the world - with their excessive wealth, nanny for every child, globe trotting lifestyle, etc - might consider my life to have less value than theirs. 

We work hard for every dime we bring in. We have a small, starter home...that we've lived in for 13 years and have squeezed seven children into. We are raising these kids without outside help, nor do we have a housekeeper, a driver, or a chef. We drive vehicles that are over 10 years old. If the fuel pump goes out in the mini-van, we just don't drive it until we can afford to get another. Our vacations consist of camping in nearby parks in our tiny little camper...that leaks. 

But our reality is so much MORE! We have love and laughter (daily). We have great friends and actually enjoy the work or our hands. Our children are a blessing (all of them) and we delight in them! While I prefer 5-star resorts, gourmet coffee, and theatre performances, I've learn to LOVE camping, McDonald's ice cream cones, and the $1 movie. :) My life is full and rich, even though, at times, suffering has been a part of it. (Who has never suffered?)

Wouldn't it have been a shame if the Angelina Jolies got to decide my fate based on the first description?

Just because my son with an intellectual disability will never father a child, might not marry, go to college, hold a job, etc., does not mean that he will suffer. Just because his life will not be like mine, doesn't mean he shouldn't have one.

How did we come to this - where we can project our hopes for our own lives onto children to the point that, if they can't meet them, we decide that they must die?!?  You look at a list of diagnoses and make a judgment on the quality of that life. 

The list never told me that my child with Down syndrome would:

* make me laugh every single day
* eat with gusto everything his momma cooks
* learn to use sign language
* wrestle with his brothers
* be everybody's favorite sibling
* be such a great problem solver
* introduce us to so many wonderful people
* love music, Blue's Clues, and pizza
* have a smile that lights up the room
* be so active (and fast!)
* have so few health issues
* charm everyone he meets

No list of diagnoses and potential problems could EVER accurately describe the life of a person!  I hope that you will reconsider your stance on this. I hope that you will view people with intellectual disabilities as just that...people. Amelia Rivera deserves a transplant. You need to give her one.

Mrs. Tara Lakes