Parham.org

This morning when I was dropping off Reid at school, he had this to say:

I don’t like it when Ava goes away because she is my friend.

The world needs more people like Reid.

A recent letter from Mitchell Levitz, Self Advocate, National Down Syndrome Society Board Member and Co-Author of “Count Us In”

Often, people think individuals with Down syndrome are not capable of doing regular, everyday things. But we want to go to school, have jobs, live on our own and fulfill our dreams. When people everywhere know this, and also know that people with Down syndrome have many talents and capabilities, then we will be more accepted in society.

Although this sounds easy, I know that changing perceptions is not easy. In my own life I have faced this challenge. There have been times when people do not invite me to go places, such as over to their house or to parties. They do not invite me because they think that I would not be interested in spending time with them or doing the same things that they want to do. What I have found is that as people get to know me and have a better understanding of who I am, as well as what Down syndrome is, they start to realize that we have many of the same interests and then they start to include me in their plans.

We are up in Illinois right now, on the Parham farm, a.k.a. Chuck-E-Parham.  Had to travel this way for a funeral.  But despite the reason for coming, I’m having a really wonderful time with the family.  It’s nice to be here, have a bonafide weenie roast outside (though the toasting of rice crispie treats didn’t work out so well), enjoy the fall colors, cool weather, and just be. 

I have big happy.

A few weeks ago (October 16) I was listening to NPR’s Talk of the Nation. The program of the day was entitled “A Medical Crystal Ball.” It was a discussion on genetic testing, i.e. if you could have a genetic test to determine if you we’re at risk of getting this or that disease, would you? And what would you do with the information?  I called and called and called but never got through, leaving me to submit a posting on the Talk of the Nation blog.

This broadcast was very interesting to me for a number of reasons.

First was the discussion of the tests for BRCA1 and BRCA2 genes which have a direct correlation to breast and ovarian cancer. Since my mom’s battle with stage IIIC ovarian cancer nearly 15 years ago, me and my 3 sisters have wondered if we, too, might have it some day. They have all had a CA-125 blood test performed.  The test is not diagnostic but is routinely used to detect and monitor ovarian cancer. I have never had a CA-125 because I’m not quite sure what I would do with the information at the ripe age of 37 (it was originally suggested to me when I was 23).

Interestingly, many years after my mother’s recovery (she is one of the very lucky ovarian cancer survivors), she was approached by a documentary company called Kartemquin Films of Hoop Dreams fame. They are working on a film called In The Family. The director of the film, Joanna Rudnick, had found out that she was a carrier of the BRCA genes and, in her quest to decide what to do with the information, set-out interviewing women who had survived breast and ovarian cancer. She found Mom and invited her and me and my 3 sisters to a discussion at our mother’s kitchen table, all under the eyes of the camera.

What ensued was a discussion of what we would do if a. Mom found out she was a BRCA gene carrier, and b. what we would do if we found out WE were carriers. The opinions varied wildly.

One sister exclaimed, “Just take it all out. Why not!? It’s not like I need those parts any more.” Another ran on the assumption that she would, indeed, have ovarian cancer one day and thus was living a very healthy lifestyle in an effort to avoid it. My third sister recoiled at the idea and exclaimed, “No WAY!  My insurance company is already flaky enough.  Give them this kind of information and they would probably drop my coverage.”

At the time of our kitchen table chat, Ava was already a part of my life.  Which led me to feel like I was the most uncertain of all of my sisters as to what I would do–I didn’t have any genetic testing for my baby, so why would I have it for me?  I don’t feel like I hemmed and hawed, but I certainly viewed the discussion in grayscale.  Would I have prophylactic surgery if I found out I had the BRCA genes in me even though I’ve yet to develop any symptoms or disease?  Is it worth it to even find out?  How would my life change?  Would I constantly worry–did I pass this on to my children?  (I know Mom was really worried about this–incidentally, she’s not a carrier.)

Nothing seems black and white to me anymore.

Which leads me to the second reason the Talk of the Nation broadcast was so interesting to me.  The overwhelming majority of callers that got on-air discussed prenatal testing.  The new recommendation from ACOG (American College of Obstetrics and Gynecology)–that ALL pregnant women, not only those of “advanced maternal age,” get screened for Down syndrome and other “abnormalities”–was brought up a number of times.  The show’s host, Neal Conan, the expert panel, and a number of callers kept referring to Down syndrome and other genetic conditions as “problems,” and shared their opinions on matters like termination, further testing, living with a person who is “disabled” in some way.  (By the way, not a single caller actually HAD a child with a disability.)

I know that many people view something like DS as a challenge.  Something they might feel is not worth it.  Something that would compromise their lifestyle.  That  it’s “not fair” to both the parents and the child.  Don’t get me wrong–there are days when having a child with DS seems like more work, more challenge.  But is it really?  Aren’t all children challenging at some point?  Don’t all of us parents wonder if we are doing the right thing?  Supporting our children in the ways in which they need to be supported?  Accepting them for WHO THEY ARE?

I see so much effort in our society, in our educational system, in the workplace, places of worship, doctor’s offices, the damn grocery store, for people to be “normal” or “regular” or whatever you want to call it.  For children in our schools to conform to some dreamy standard of perfection.  For parents to be “hyper-parents” that home school and only play Mozart at home.  For men to be the “warrior” and women to be the “sex-pot.”

What I want to say to the people that are so hell-bent on having the perfect child, having the perfect, disease-free body is this:  Isn’t it all just a matter of perspective?

Why would I want to change two pivotal situations in my life that taught me what was really important?  Sure, those pivotal situations were not ones I expected, and they were incredibly dificult to work through, but isn’t that how we discover the beauty in life?  Isn’t that how we grow, let go of overblown expectations and just be?

I truly wish I could share my personal experiences in a way that might help others to embrace the uncertainty which is life and thus use that uncertainty in more positive ways, rather than trying to perfect ourselves with tests and treatments. I’m curious if Mom would say that her life has grown, rather than withered, in more ways since having ovarian cancer.  I know for certain that since Ava became a part of me that I have blossomed in ways I never imagined.  Surely, neither has been without struggle, without pain, without sadness and joy, uncertainty and hope.  But it is what it is, and I can’t imagine taking a test that would erase all that I’ve learned.  To share the joy of an utterly unconditional hug.  To share the pain of illness and the thrill of survival.

That’s my perspective.  What’s yours?

Tonight I was sorting some things while Amy was helping Reid get ready for bed. Reid came into the room to wish me a good night. He walked up, kissed me, and said, “That kiss is going to say something inside your heart. Make sure you hear it.”

I don’t think I could have heard it any more clearly.

I wouldn’t even think of doing this.

OK. Even though I think that most advertising is the equivalent of mental pollution, every once in a while someone produces something that is quite cool. The Big Shadow advertising below is one such example of quite cool. Click the picture to play the movie. Click the link below the picture for more info.

P.S. I love Tokyo.

Big Shadow website

From IndianPad.

There are some cool photos here.

Creative photos by Chema Madoz