October 20, 2004

Silk Cords

"Could you put my hair in a tight braid before I go to bed?" The Artist enquires.
I am very pleased to do this. As a pre-mom one of my fantasies was brushing and playing with my little girls' hair. Then I had one child after the other who hated to have a brush run through their locks.

But the Artist is approaching her teen years; the moodiness has begun as well as the extra long looks in the mirror and the striving for looking her best.

As I comb out her hair I think of a recent show I watched---one of these Hallmark movies; big issues, moral development, happy outcome. The big issue was cloning and the moral development was a reporter learning that sometimes the human part of a human-interest story was the most important aspect, and perhaps the story shouldn't be told.

Of course cloning brings up all sorts of ideas; Brave New World children, bred for eye color, occupation and time of death, replacement children, who would most likely never really fulfill their parents hopes, little mes running about, forced into the vicarious dreams of their progenitors.

I do not really see much use in cloning of a human being; much good use. I can not see what the benefit would be of having a same gened child as someone else, living or dead. No clone would be the exact duplicate of the person cloned; the environment having too much to do with our development, perhaps more to do with our development than genes.

But, there are other ideas brought up as well; eugenics; evil as they come. But also the elimination of disease; no more tay sachs, cystic fibrosis, Alzheimer's or neurofibromatosis.

My daughter has the last one, as do I; a lot of guilt there, having passed it on. So far, she is fine, some learning disabilities, she is smaller than the average ten going on eleven year old, but these are very minor troubles in her life, and I pray it continues that way with her.

But things could go wrong; very wrong and that frightens me. And as she takes up a mirror and smiles at her image one worry is deformity. I know some of you have heard this before.

Since she has been young I've taught her what is inside is greater than what is outside. That beauty, true beauty, comes from the soul. I haven't held back from her what could happen, though it isn't discussed everyday, it is just a fact in her life that I've spoken with her about.

Today, as I held her hair in my hand, as I began to brush it into silk, I asked her if she wanted to see what a neruofibroma looked like. I talked again how it could affect her; showed her one on my forehead, let her know that it could disfigure her, though we hoped not.

Heavy conversation for a ten year old, but I feel it is best to have the truth early enough to learn how to deal with it.

Here was her response.

"Oh, I don't care how I look."
"But people can be mean. What will you do then?"
"I'll ask them how they would feel if they looked like this. How they would like it"

This is why I began early on to teach her about the truth of beauty. She has absorbed my lesson well. It is in her heart and in her soul and though nothing can really prepare one for the actuality of an event, she at least is forearmed.

And then I wonder; if I could eliminate this disease, and still have this child, would I do it? And the answer is yes. But the real question is, could I eliminate this disease and still have the same child? Even if she had the same training, even if I stated the same things to her from the moment I knew what course her life could take, would I have the same child in my life?

I really think the answer is no. I don't know that we can separate the various parts of ourselves like that; her is the disease and here is the benefit. And there are so many benefits to this child. She is a wonder, sweet, gentle, caring. She is a natural mother, quiet, reserved, a bit of a loner. Most people who meet her tell me how sweet she is...and that is true. Not that she has no rough edges; I'm her mother, not a moron. I know she has a angry side, can hit or hurt sometimes. But her overall personality is sweet.

Which doesn't mean I wouldn't eliminate the disease from her if I could. But I wonder who would, in the end be created.

Part of me wishes I would have that choice. Part of me is glad I don't.

Posted by Rachel Ann at October 20, 2004 09:04 PM

Your writing is great. Always interesting.

Posted by: Judith at October 20, 2004 10:28 PM

Some excellent points made! I'm not familiar with neurofibromnatosis so I'm going to go look it up. However, I'm impressed with how you're preparing your daughter and the maturity that she seems to have already for one so young. She sounds truly beautiful!

Posted by: Andrea at October 20, 2004 10:33 PM

Please don't ever feel guilty, Rachel Ann. This post just kinda broke my heart.

There is something of the same in my family, my mom had it, and she passed it on to my younger sister, too.

Your little artist is who she is not because of her disease, but because of who her parents are.

And your kind, wonderful, loving and funny and everything that she's going to be when she grows up.

Posted by: Dawn at October 21, 2004 05:44 AM

Wow what a great post. You summed up how I feel. Someone asked me during one of my pregnancies, whether I would still have the baby if I knew something was going to be wrong with it. I said absolutely! To me there is no substitute for what each child can bring. No I wouldn't want to see it suffer, but would I choose to stop it coming...absolutely not, for some reason, in his infinite wisdom, Gad plans things the way they are. You are a great teacher for your daughter!

Posted by: Angie at October 21, 2004 09:18 AM

Oh Rachel Ann, what a wonderfully brave person you are and believe me you are a great mom and I have no doubts whatsoever that your daughter is going to turn out every bit as wonderful as you are ! All those qualities and values that you are passing on, those are priceless. I am an avid reader of your posts and everytime you have something so sensible and right to say :) God bless you and your family ! Hugggs..
Take care..

Posted by: Pincushion at October 21, 2004 10:23 AM

Sometimes you make my heart hurt so much, Rachel Anne. Your daughter is a lucky young woman.

Posted by: RP at October 23, 2004 02:56 PM
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