Wednesday, November 24, 2010

And we march on...

This whole sad situation with Baby Doe has had me thinking more than usual which is saying a lot considering I am always trying to figure out how best to navigate the road of life. I am still sickened by this case but really I wonder how many of these things happen every year? There are stats that around 90% of babies diagnosed prenatally with Ds are aborted in the US and it is higher in many other countries. That's much the same that happened with Baby Doe. These babies are deemed not worthy of life. How is this acceptable to anyone? It's not acceptable to me and I want to fight back.

I am beginning to realize that a HUGE part of the problem is just plain ignorance. People just have no idea what life with a special needs child is like. I feel like it is my responsibility (and my HONOR) to educate them. I am an advocate not only for my sons but for all those out there with ANY disability. I want people to join in the fight with me. It's happening- the proof is in the response to Baby Doe but there is so much work to be done.

The public perception of those of us with kids with Ds is that we are special. "They" could never do what "we" do. God has chosen "us" for His special work. "They" think "we" are inspirational for loving our children. Does anyone else see the problem with this? "Us" vs. "them" is never a great thing but in this instance it is so offensive to me. I am offended because there is an implication that loving my sons MUST be hard work and that I am some kind of hero for not just chucking the boys out with the recycling. My sons are my greatest accomplishment. If I never do another thing in my life I will have made the world a better and more beautiful place simply by giving life to my little miracle men. It wasn't a choice- it was a privilege. I am HONORED to be their mother- not burdened.

So, what do we do? I think there are a few MAJOR things we can do to fight the tsunami of ignorance.
First- be PROUD of your family. Show the "them" that you have been blessed with such an amazing gift that there are not adequate words to express your gratitude.

Second- BELIEVE in your child. Never just accept the status quo- always EXPECT that they will and CAN achieve anything that you expect of them. Don't let other people dictate your child's ability.

Third- SPEAK UP- if someone uses the word "retard" or "retarded" or any other offensive terms in front of you- use your voice. You don't have to yell- just say something as simple as "I find that word to be very offensive." If they question you as to why- tell them! If it happens on a tv show or on the radio- write letters, tell your friends to write letters- speak up and EDUCATE.

There are so many more things we can do but I feel like things need to start changing. Once the public perception changes maybe there will be fewer aborted babies and fewer DNRs issued for helpless little babies.

I hope this didn't sound preachy- I just feel like the tides are ready to change. Let's push them in the right direction. There are over 400,000 people in the US with Ds- there are a lot of voices to be heard.


The Next Page said...

You are right, we need to educate.
I will put my own little pet peeve in here: Most people are afraid of what a baby with Down syndrome will become... what happens to them when they are adults?
Education is very important, exposure is very important! Adults with DS these days are the first generation that have the benefit of therapy all their lives and we expect more from them. We need more people to see our adults! They turn out ok!
Sometimes, I get frustrated because there are alot more people advocating with pictures of cute babies instead of adults.
However, I will say that in some states, it is not true that they have therapy all thier lives... still in the US, therapy is non-existant for some of our children!
Ok, Sorry, I could go on... You can read my blog at or

Nikki P said...

I just wanted you to know that our lifes work has only just begun. I agree with you totally with your comment's. Six years into this, I still here the comment's and remarks that we are special people and blah blah blah. But the reality is, is that our kids are specail, at least to us, just like a typical child is special to their parent's. LOL

There is so much work to be done, and I am so glad that you stand with us. I just wanted you to know how very proud I am of you. You've become a great advocate in one years time.

Sarah said...

What an amazing post! Your boys are beautiful (and such wonderful gifts from God!)