Monday, October 6, 2008

"Less Able is Not Less Worthy"The Bauer-Mueller philosophy

How about we try a slightly lighter post,shall we?Something perhaps not oozing with as much cynicism and bitterness.Did it leave you with a bad taste in your mouth?Did me and I wrote it.I think I brushed my teeth,like a 100 times.My apologies.Anyway,one of the blogs I frequent is is amazing.Her blog is a collection of news and commentary about disabilities drawn from news organizations around the world.If you haven't visited her site,take some time and do it now.Besides being highly intelligent and being an incredible advocate, she is most importantly a mom.Yes,a mom of a child with special needs,specifically a child with Down syndrome.But she writes about so much more than that.She covers the gamut and causes one to really sit back and think and talk and do.I have several favorite archives but tonight I will share just one.Through the course of the month I will post a few more.Her family consists of herself, her husband,her son and her 22 year old daughter Margaret who happens to have Down syndrome.You can find a little bit more about them by going here.I wanted to post this short essay written by Margaret almost 10 years ago.Pretty awesome ,I think.Worthy of sharing.

Margaret’s guide to Down syndrome

May 12th, 2007

By Margaret Muller

Today I’d like to tell you about Down syndrome. My purpose for talking about this is to be able to say, “Yes, I have Down Syndrome. Sometimes I have to work harder to learn things, but in many ways I am just like everyone else.” I would like to tell people that having Down syndrome does not keep me from doing the things I need to do or want to do. I just have to work harder.

Down syndrome is a condition and not a disease. You cannot catch Down syndrome like you can catch a cold or virus. It is something you are just born with–like blond hair and blue eyes. If you have Down syndrome when you are born, you will have it your whole life.

People without Down syndrome have 46 chromosomes, which carry all the genetic information about a person, in each of their cells. People with Down syndrome have one extra chromosome. So a person with Down syndrome has a total of 47 chromosomes in each cell. Doctors and experts are not really sure what causes it, but they say it occurs in about one of every 700 babies. This happens randomly, like flipping a coin or winning the lottery.

Everyone with Down syndrome is a totally unique person. The extra chromosome makes it harder for me to learn. Sometimes I need someone to say, “Settle down and get busy!”

Even though I have one extra chromosome, the rest of my chromosomes carry information from generation to generation just like yours. Chromosomes control certain genetic characteristics, like eye color, skin color, height and some abilities like music, art or math.

For example, I get my blue eyes from my father, my fair skin and freckles from my mother, my blond hair from my grandmother, my long thin feet from both my mom and my dad, and my need to wear glasses from both my grandparents and my parents. I like to concentrate on the ways that I am like everyone else.

I am very lucky to be alive today rather than 50 years or even 20 years ago, because back then the doctors and experts believed that people with Down syndrome were not capable of learning. But now we know that people with Down syndrome are capable of doing many different things.

I personally am doing things that some people didn’t think I could do. When I was born, somebody told my mom that it was too bad that I was named “Margaret” because I would never even be able to say my name. That person might never have expected that I could win four medals in Special Olympics swimming, be a green belt in karate, cook a pizza, read a novel, run half a mile or get up in front of the class and give a speech! With a lot of hard work and encouragement, I have been able to do all these things.

I am not sad about the fact that I have Down syndrome. It is just part of me. I have a great brother (most of the time), and parents who love me a lot. I have wonderful friends who enjoy hanging out and having fun with me. I have teachers who help me keep on learning new things. I am glad to be a student at Lincoln Middle School, because it is a great school and almost everyone is really nice. Down syndrome has not stopped me from having a worthwhile life.


The Loux Family said...

Hi Heather,

Thanks for leaving a post on my blog. I actually loved reading your blog. You are expressing what many of us have felt. Our firstborn son was born with severe Spina Bifida. He died 2 and 1/2 years later. I never wanted to be around people. I didn't like going to the store or leaving the house. I felt so sad, so much of the time. I have a great husband and we worked through the darkest part of our lives together, with God. It's a miracle that our marriage made it. God is good. I think we all have our good days and our hard days. I think my husband and I have such great love for Special Needs kids today because of the awesome love we experienced through our little Josiah.

I think you're an awesome woman and I applaud you and your family for staying together and plowing the ground, waiting for the fruit of all your labor to continue to spring up in new and beautiful ways.

Hugs to you all,

Renee' Loux

Christina said...

Amazing! Now THIS is something that should be printed out and given to every single woman who checks in for an abortion after finding out her child has DS. I bet it would change a lot of misconceptions! ;)

Cheri said...

Wow...what an amazing young you know what she is doing now at 22??

Thanks for posting this! :)

and by the way....I love your new look on your blog..very cute!! :)