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.

Sunday, November 21, 2010

Together We Stand as One

Tonight I am full of love and pride and HOPE! Yesterday I heard the beginning of a story about a set of twins who were to be adopted into the same family. One of the babies was diagnosed with Down syndrome and he found himself left in the NICU of Arkansas Children's hospital with no one to take him home, without his twin and with the added bonus of a Do Not Resuscitate order in effect. Talk about a lucky streak- not so much.

When I first read about this little man my heart broke. I mean that quite literally- it was suddenly painful to breathe and all that I could do was try to fathom the cruelty and callousness of people.

Before Casey and Connor were born I didn't know if I could handle a child with special needs. After they were born and diagnosed I learned that it is not that difficult and the rewards FAR outweigh the hardships. In fact, other than the occasional ignorance of people there have been no hardships. My sons have changed who I am to the very core of my being. Because of this it is my new wish to change the world.

Back to Baby Doe- I posted the story to my FaceBook wall and it began spreading as others in the Ds community caught wind of the story and posted it on their walls and emailed the story as well. Baby Doe appeared in blog posts, letters to the Governor, appeals to the press, the hospital B.O.D., and prayers throughout the world. This tiny little person went from not having a family to having THOUSANDS of people praying for him and lining up to be his advocate. WE became his family. Together we became ONE for Baby Doe.

We called, emailed, blogged, prayed, cried, hoped, prayed, strategized and repeated until we finally received word that the DNR was lifted.

Praise be to God! We fought and we took a stand and now, this little man who is more loved than he knows has what we all wanted for him- a chance.

Let this be a lesson- You can make a difference if you care and if you make your voice heard. You CAN change the world.

"So when you feel like hope is gone,
Look inside you and be strong,
And you'll finally see the truth that a hero lies in you."

Keep praying for Baby Doe- he is still a sick little man.