And it's delightful and boring at the same time. There's this ...thrill... as you walk around, knowing that there is literally nothing you can't do. You're a legal adult, you can go to pubs, nightclubs, adult stores, vote, drive, gamble ...the world is open to you! You can go conquer the world and no one can tell you not to!
Yet....yet at the same time you feel exactly the same. I'm exactly the same as I was two days ago, yet I can do so much -more-. Like drink legally.
Speaking of drinking, it was hell funny on my birthday (yesterday, April 5th). My mothers boyfriend, Shane, tried to get me drunk. He wanted to get me seriously maggoted, plastered, well marinated so that I was, quote, 'wurring my slurds' or, slurring my words. Well....that was the plan.
Such a pity that Shane fell asleep on the couch after four glasses non? Mind you, there was a shot between each glass, Baileys and milk mmm. I got mildly tipsy, but that's about it.
What'd I get? A 9carat gold bangle from my mum, a 24carat or something, necklace and pendant(a heart with a butterfly, the body of the butterfly one side of the heart) from my boyfriend, and a platinum (white gold) necklace from my dad, that has more diamonds in it than metal! It is -very- nice. Very flash. I love it! all my lovely shinies.
And NO, I didn't get a hang over. I drank lots of water, well, not lots, but some, and that combated the dehydration. I'm tiptop and raring to go, so much so that I'd been up for 15 minutes and had started on some homework I had to do. Law homework none the less, so not exactly easy.
Which brings me to now, or rather, later today. I discovered (was pointed to) a poor girl that would be the poster child for reasons to have an abortion...
http://i.somethingawful.com//sasbi/2006/08/elpintogrande/
04-julianabirth.jpg
(copy and paste, the link is fragmented)
It is real. Very real. Poor Juliana.
This is an extreme example of Treacher's Collins Syndrome. It's similar to having a cleft palate but instead of missing just the roof of your mouth, you're missing your entire mouth. And in the case of Juliana, jaw, orbit bones (thats what the eye sits in) and basically everything that's below the cranium.
You always get advocates as to why you -shouldn't- abort a child well...No offence to my religious friends, but consider what happens when you -don't-. Juliana, as sad as this sounds, should have been aborted. She's had to have surgery to breathe properly, and think of the stigmatism, the ostracizing, the hate, the bullying, the general mean nature of children, -and- adults that she'll get through out her life because of something she cannot change? The flinch and aversion of eyes that -everyone- will give her on first meeting? She has a completely cognitive, coherent mind, no brain damage, and there in lies the true tragedy. She will know, exactly, that she is different, she is less, she is considered to be 'deformed'. And there's not alot surgery can do to help her. there's nothing for bone to be grafted onto, nothing for plastic and metal to be supported from.
She'll have to spend her entire life like this, living as a 'freak of nature', because of lobbyists voting for the right to life. Ever considered that creatures that wouldn't live without our technological advances, shouldn't? I'm not going against abortion mind you, if the mother was a victim of a rape and a child is the result, abortion is fine. If its just cost, adoption. Likewise for the 'oops', adopt the child out if you don't want it.
Euthanasia. People that are too sick to live, have fatal illnesses and that the only way for them to exist longer is in a vegetative state with machines breathing for them, pumping and filtering their blood, feeding them, stretched out through pain an endless cycle of pain, should be allowed to die. The extremely old and infirm, where the body has given up but science wont concede the fight, people who are in a coma for years and years and years with 0% chance of waking up should have the plug pulled on them. You can't kill something that is nothing more than a body lying there performing bodily functions like breathing. It's not possible.
How is it humane to keep another in a state of agony, of perpetual existance where all they can do is listen to the beeping of machines and watch the shadows move over the ceiling?
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Come think, come ponder, perhaps, you'll understand?
2 comments:
Hi -
I wanted to respond to your comments about Juliana. I agree that this is very hard for Juliana and will continue to be, as it is for the parents. However, as far as the Treacher Collins community is concerned, she will never be considered as 'less' just because she was born difference. We use the language that she has a facial difference but she is not less. Less than what?
Also, even though a compelling argument can be made that some children should be aborted, no law on abortion could have made any difference with Juliana because the parents didn't know she would be born this way. So abortion couldn't have been a factor in their decision.
I wanted to mention that Juliana does have more than one mutation that affected her outcome, so she does not only just have TCS but some other things going on as well that made her so severely affected.
I'll never forget when the dad posted the picture of two day old Juliana on our TCS discussion group and announced, "This is our precious beautiful new baby girl."
It's not until you have TCS yourself (as I do) or have a child with TCS (as I do) that you began to understand what a small world you used to live in and how much this changes and enriches your life. Don't feel sorry for Tami & Thom as I'm pretty sure they wouldn't change their life if they had a chance to.
Happy 18th Birthday to you, and many more!
-----
Judy Mosher
Treacher Collins Connection
CoDirector / CoFounder
Judy@tcconnection.org
www.tcconnection.org
www.treachercollins.org/guests/olivia
Wow. A comment by the TCC. She has a point you know.
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