Tuesday, July 22, 2008

Would you cure your child of Down syndrome if you could?

Why would people be against a cure for Down syndrome? One theory is that it's all about pride and acceptance. To want to cure something implies that the something is bad or abnormal, and people don't want to feel thay they are bad or abnormal. They want love and acceptance, and can you blame them?

Why can't we love and accept those who are different now, and if there was a cure why can't we accept that too if the person wants to be cured?

I love my daughter with all my being. I am so proud of her and think she is the most adorable thing ever. I love other people with DS, too. There is just something about them that is very special. It's like looking into the eyes of God.

On the other hand, I am also sad for my daughter in some respects. Yes, she will achieve to the best of her ability, find happiness, and have a good life. She makes people smile. But there will also be things she will never do. She will always have to struggle. She will be the butt of jokes from cruel people. She is more vulnerable to predators. She will have trouble with speech. She has a higher chance of becoming sick from a myriad of diseases including Alzheimers and leukemia.

Despite the struggles, she WILL have a good life, she WILL inspire people, she WILL help in promoting acceptance and awareness of Down syndrome, and she most definitely WILL love and be loved for who she is.

So would I cure my daughter if I could? I think I would, with mixed feelings. I would miss some things about Down syndrome, but as for the health issues, I'd kiss them goodbye and never look back.

Sunday, July 20, 2008

Driving with Down Syndrome! Yeah!

There are disabilities in the world today, but if you have one, why does it have to hold you back?

Take Jon, for instance. He has a job, goes to college, volunteers at a food bank and at a hospital, goes on dates, and drives his car to all these places and more (his brand-new car he bought with his own money).

Oh, yeah, I almost forgot to mention that he also has Down syndrome.

Wouldn’t it be cool for someone to casually look over on the road and see a person with Down syndrome driving next to them? Wouldn’t it be even cooler if that was a regular thing to see and it didn’t surprise people any more?

Jon's Story with pictures

Tuesday, July 1, 2008

Mental Retardation is a descriptive medical term, Retard is an Offensive Slur!

We’ve all been guilty of it. We use those with mental retardation as our scapegoats because they are the weakest and most vulnerable. “That’s so retarded”. “You retard”. “I’m so retarded”. Before my daughter was born, I didn’t think twice about using that slur. I didn’t know how rude and hurtful it is, not only to the mentally challenged, but their parents, friends, and family members, too.

Here’s an example…imagine if your precious, loving, funny, bright, and beautiful child was a little slower then her peers. Imagine how hard she has to work to get to those milestones like walking and holding a bottle, even, when her friends and cousins do those things almost effortlessly.
Then imagine how sweet the victory is when she finally-after months of practice-walks those first steps! Sure, she’s a little wobbly, and maybe doesn’t walk quite like the others, but SHE’S WALKING and that’s all that matters.

You are so proud of her for working so hard, and she’s proud, too. And then…and then along comes someone who is close to you, or maybe not so close and makes a minor mistake like spilling their drink or walking a bit slow or dropping something or doing something another person doesn’t like. And then you hear it.

“You retard!”

And you cringe and hope with all your might your beautiful daughter who is not a retard at all didn’t hear that-and if she did, you hope with all your heart that she doesn’t have a clue that that slur applies to her.

People with mental retardation can and have done so many things that blow away the typical mental retardation stereotype. Check THIS out! Can your “normal” child even DO this? Go Karen Gaffney!

There will always be ignorant people who continue to use medical terminology as a slur, just as there are still racists who use the “N” word. However, I know that the good, responsible people of this world will understand and be a little more sensitive in what they say. My family, my little girl, and people the world over thanks you for not putting a part of our human family down that needs all the hands up it can get.

Monday, June 23, 2008

Thank You, Ts65Dn

Cute, fuzzy, harmless. Pink and white. Pet or pest...or something more?

Researchers have created a mouse model of human Down syndrome. This is an exciting advance-it means researchers are getting closer to helping people with Down syndrome learn better and have more understanding.


This research will also benefit people who get Alzheimer disease.

A Huzzah to you, mighty mini mouse Ts65Dn. You and your brothers and sisters are doing important work.

Monday, June 16, 2008

Ball and Chain?

Q: Will my child with Down syndrome have to live with me for the rest of her life?

A: Probably not, but if so, would that be such a bad thing?

That was my biggest fear--to never be "free" again to be spontaneous and just go wherever, whenever.

I've thought about the possible living arrangements. Depending upon Madison's capabilities, she could live in a group home or have her own apartment (with or without roommates). She could live with one of her siblings. She could marry and live with her husband. She could live with us in her bedroom or in a guest house on the property. She could possibly live in her own home.

All of these arrangements will most likely include support of one kind or another.

I've worried about a future with a ball and chain around my ankle. However, these days there is so much support available that I no longer think that way. And Madison holds so much promise. Each day brings something new. She's bright and friendly and funny. It's exciting to see her interact with others. I think of the impact she has on people and can't help but smile.

She's concentrated sunshine.

As humans, we tend to surround ourselves with beautiful things to enrich our, art, music, favorite colors, a comfortable chair....why would it be so awful to have concentrated sunshine living with you, too?

I guess it wouldn't.

Friday, May 30, 2008

Hugs for All

Dear, dear baby. How do you know? You have a gift. You know how to ease pain and suffering. More than that, you seem to know just who needs your kindness and love most of all.

The man whose wife is chronically ill. The woman who suffers from migraines. The mother who had a bad day. You see the hurt, baby, and you don't hold back. I've watched you go to them, give to them your love in a long and soul-sustaining hug. You pat their backs and lay your white-blonde head on their shoulders. You smile and let them know in your own special way you love them. And their souls are filled with strength and gratitude for the unabashed way you freely give.

Never change, baby. The world needs you.

Monday, May 5, 2008

She Really IS Typical..or is she???

Madison has turned two for sure. Demanding things, throwing fits at the slightest provocation, insisting things be done "her way", whatever way a two-year old thinks is best at the time. Sure seems a lot like my boys when they were her age. As Dr. Laura said-"The most annoying thing in the world is a two-year-old."

She's still sugar and spice and everything nice, though. She's got everyone on our daily route wrapped around her finger so tight it's threatening to cut the circulation off. Seriously. We've got people waving madly and honking at us from the next lane over just to get a look from the little princess. It's been like that from day one.

The best thing about Madison is that she doesn't get a big head about all the attention. She simply loves people and shows it. And boy do they ever love her back.