Tuesday, June 3, 2008

A Cure?

On the Ds forums and blogs this type of question has been raised: If there was a cure for Down syndrome ,would you want your child to have it?

Usually, I would say no, I love Rylie just the way she is. I would never want to change her. But then last night when I was for some reason having trouble getting to sleep, I started thinking about this. Hmmm, would I want that cure for her? So I will list some reason why I would and some reasons why I wouldn't

I would want the cure so that

1. Her speech would be normal. So that I could always understand her and she could always understand me. I would love to have a real conversation with her about her day, what she's thinking, why she doesn't behave lol!
2. She wouldn't ever be teased or discriminated against.
3. She wouldn't have a higher risk of developing Leukemia or Alzheimer's.
4. She would be able to have children and care for them w/ a husband.

I would not want the cure because

1. Her down syndrome characteristics make her beautiful. I love her eyes w/ her brushfield spots and their almond shape.
2. I believe her extra chromosome is what makes her so carefree. I don't see Rylie ever growing up to be an anxious person and full of worry. I believe she will always live one day at a time. She will not be judgmental and she will be content.
3. She will prove to people that just because she has Down syndrome doesn't mean she won't have a fulfilled and successful life.
4. She has been amazing me since she has been born with all her hard work and accomplishments.
5. She is funny. I mean super funny! Again, I think her humor comes from the extra chromosome.(I really need to start posting some video of her, so you can see for yourself)

Now lets go back to the first list.
Speech- well, with continued speech therapy and hard work from her, me, Vince, and teachers her speech will keep improving and some day we will have real conversations. So, I don't need a cure for that.
Being teased and discriminated against- Well, I have been teased and discriminated against, and I don't have Down syndrome, so I guess the cure wouldn't help with that either.
Leukemia and Alzheimer's-Yes the risk are greater, but you could be cured from Down syndrome and unfortunately still end up developing leukemia or Alzheimer's.
Getting married and having children- Again, people without Down syndrome don't all get married and have children.(Rylie may or may not, I shouldn't even be worrying about this yet)

Now lets say shortly after Rylie was born, a cure was developed for Down syndrome. Lets just say it was a magic "cure all" pill. Would I have wanted it then? ABSOLUTELY! I would have given her the whole bottle and praised God for curing her. I would have jumped on it, believe me. Back when she was born I was praying to God to heal her from Down syndrome, seriously!I was afraid, because I didn't know anything about Down syndrome. I didn't really know Rylie yet, I didn't know how much of a blessing she would be.

After five plus years of having Rylie in my life, I don't think I would want the cure. The Down syndrome is what makes Rylie , well Rylie. She doesn't suffer from Down syndrome. She doesn't need to be cured. We need cures for different diseases and cancer, but not Down syndrome. We need medical breakthroughs and cures for different health issues that people w/ Ds are more susceptible to, but the Down syndrome alone doesn't need a cure.

By the way, In case your wondering, I don't really think there will ever be a cure for Down syndrome.


Michelle said...

Great post-you put a lot of thought into it, and I agree too about the reasons for and against. I definitely understand about the speech and wanting to have conversations. I wish some things just didn't have to be so hard for our kiddos!

Debbie @ Three Weddings said...

When Peanut was a baby I went to this new parent breakfast at the guild and one of the mom's of a 4 year old said right now you wish if you had a magic wand you could wave it and take away the Ds but there will be a day when you will not want to take the Ds away. It is what makes your child who he/she is. I thought that was interesting, but I was not there yet. Like you, there are things I would like to make better for Peanut (speech, etc.) but then again, there are things I would like to improve for my other girls, too. I'd like to see medical advancements that will help our children live long and healthy lives, but not "cure" them. This was a great post. Thank you!

AZ Chapman said...

I am so glad that the good of her DS outnumbers the bad. I am glad that y see that now/. that pice was wounderful

Melanie said...

I completely agree. At first I would have jumped at the change to cure Logan...but now, he is so wonderful because of the DS. It makes him a joy and just right the way he is. A cure would be like saying good-bye to our kids forever.

WheresMyAngels said...

Alzheimer's, the only reason I would want a cure. I want a cure for it. I have witness too many deaths in the last few years and I get sick at my stomach thinking of both my daughters dying that way also. Yes, it could happen anyway, but our kids die at a much younger age then most people. I lost one of the people I take care of last December ( she had DS), it was awful! She was 60, a few months later my Aunt also died of it, but she was in her 80's.

Chris said...

What a beautiful tribute to Rylie.

I never think of "curing" John, but at the same time, I don't like the effect that extra chromosome will have on our childrens' brains as they age.

I'll admit, if there was a pill that would help John's cognitive development, even just a little, I would give it to him, not because I don't love him for who he is, but because I truly think it could make such a difference in what the future could hold for him.

I don't want anything standing in the way of his reaching his dreams. I want him to have a long, happy, healthy life. And yes, selfishly, I want to have long conversations with him one day. I want him to be able to tell me all he is feeling and thinking. If there is a medical intervention that will help him accomplish that, I'm all for it. I don't know, does that mean I want to cure him?

Great post; you give us a lot to think about.

Stephanie said...

I have always thought that without the extra chromosome, Aiden wouldn't be mine; he would be someone elses.

Mamarazzi said...

popped over from 3 weddings.

BEAUTIFUL and heartfelt post....very thought provoking. thanks for that!!

Shannon @ Gabi's World said...

AMEN! I used to have arguements with a girl I used to work with over this very subject because she didn't believe I would never change her Down syndrome. I just love every point you made and I think you should submit it to Gifts II!!!! Really!!

Kari said...

This is a question that I have put alot of thought into as well. What I came up with is "The only way I would want to cure Tristan is if It wouldn't change who he is" I would never want to miss out on who he is.
Very well written post. :)

Anonymous said...

Thanks to Debbie Yost, Three Weddings, I found your blog and this post.

Such a beautiful story about a beautiful child. Both you and her are truly blessed.

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