About mid-year we got word through the research grapevine that scientists had figured out how to turn off the extra Chromosome thereby turning off Down syndrome. When I read this research I saw key facts, some others did too, some others triggered on key emotions. Though the facts are out there and the potential is incredible, the truth of what science could be capable of is a long way off. I want to believe that it could happen in my son's lifetime, I really do. But before you condemn me for wanting to change my son, let's talk about that research.
Scientist have created an abnormal gene and chromosome anomaly in mice. Yes those furry little white mice almost everyone is willing to cuddle. Anyway, Down syndrome is not a mouse genetic disorder. In mouse speak that means it doesn't exist, but scientists have found a way to replicate it in mice to further research in humans. Let's discuss that part another day. So what did science do? Scientists have determined a way to turn off the extra chromosome in mice. Well, yeah!
This was the news that started a Hurricane of emotion as both sides of a debate no one thought they'd ever be arguing out loud took wing. The ethical debate, the eugenics debate, and everything in between seemed to come to head all at once. You see we're already fighting countries like New Zealand and Belgium to merely protect these extra chromosome kids...their laws and practices are frightening and make me wonder if I would ever take my son to either place to visit...I don't seem them as warm and welcoming. We're talking about countries with lawsuits against doctors because the parents birthed a Down syndrome child and wanted millions from the government to make up for it; I wish I were making this up. We're talking about countries that want laws in place to destroy a child upon the delivery and the realization that the child has Down syndrome. Again, not making it up. So then throw into the mix this sudden question of what would you do if you could suddenly turn off your child's extra chromosome? Chaos and fear.
The debates are heated, people are very emotional about this idea. They should be, you're talking about advocates for those that may not be able to advocate for themselves. You're talking about people. But sometimes putting the cart before the horse can have dire consequences, sometimes you have to step back and look at the truth in the science before you plan an attack.
They turned off a chromosome. In a mouse. In a mouse that didn't naturally create an extra chromosome, and science turned it off. There is a giant leap between mouse and human, there is a giant leap between what we can and what we might be able to do. But the key to this research was this: only at conception. They could only turn it off at conception. What the rest get is the potential for drug therapies that might help improve cognitive ability in the future. Maybe. Maybe it will help with short term memory, help with a person being able to better live on his or her own, better able to keep up in a fast paced world. Maybe become as jaded as the rest of us.
It's that maybe stuff that scares folks the most I think. That maybe if the one we love understands more and handles more they will lose that spark in them that is so pure. But is it right for me to decide that Bradley shouldn't be smarter, and more independent because he might suffer the mood swings that my other two kids suffer?
Here's the thing. Genetic testing is going to eradicate Down syndrome...and a lot of other syndromes with it. Parents are going to know at 12 weeks whether they are carrying a child with Down syndrome, at 12 weeks, a lot of us haven't told anyone yet...at 12 weeks...things just happen. There is less guilt to abort a child at 12 weeks because there are women who spontaneously suffer through the loss of a fetus at 12 weeks...and up...and often no one ever knows why. Perhaps that child had a chromosomal defect that was not viable...perhaps. But doesn't that make the ones that are viable, the ones that are born and come out to face a harsh word that much more important, more special? When you think about what it took for a child to survive a pregnancy with an extra chromosome, perhaps we should be delving into who they are and how they managed to survive. The very fact that these babies survive and are born tells you something: that God wants them here...or if it makes you happier, that science is not opposed to their place here.
I don't know what would happen if scientists could turn off the extra chromosome...if they truly can do that it would happen before a woman knows she's pregnant so by that she would never know if her child had Down syndrome or not. So in theory no more babies with Down syndrome would be aborted because no more babies are being born with Down syndrome. But scientists are saying that they can't turn it all the way off. Interesting. What do you do then? Are you willing to take a baby that has a little bit of Down syndrome? Could that ever really happen? Would it be more likely to have a baby with Down syndrome that has a stronger cognitive development, perhaps less likely to develop so many of the health issues that our children face. If you can help develop the digestive system better and wipe out Leukemia all together, I'm in.
I've said it before, and I stand by it now. I'm waiting for more answers. I don't know what kind of effect this idea or the possible drug therapies could have for Bradley. But I know this, Bradley is who he is. Who he is going to be is still going to carry this spark that he has inside of him. Improving his brain function, improving his health - those are hard to argue against. Do I think he'll acquire more attitude and independence? Well, let's hope so. My typically developing girls get bullied, and I am sure that Bradley will feel some of the nasty effects of it as he gets older and gets into school too. We are valiantly trying to teach the girls how to protect themselves, how to respond with grace, how to respond with strength - and these are difficult lessons that they are learning. But the girls are holding their own, I am so proud of them. Do I wish I could make sure that Bradley has the same success? You bet I do...but I worry. I wouldn't be opposed to him having the strength, the presence of self and mind to handle the bullies that might, and probably will, come his way...and when the time comes he might do just as well as the girls, but we can only wait and see.
I fully admit this now - I want my cake and I want to eat it too. I want all the positives from this research with none of the bad. I want to skip all the way to the end where there is a rainbow waiting and sunshine and maybe even a pot of gold...I want it all, I want it like that. That's not what I'll get. Down the road, I will be weighing for and against this research, this future. I don't know which side I will come down on, but whatever it is...I can only pray it will come down to the most positive life and future that Bradley can have. Bradley has a beautiful soul, it's unbreakable, it's perfect. And it's not going to change. And having an extra chromosome is not what gives him this soul...it's just him. I say that because I can tell you without a shadow of doubt that my Madison has a beautiful soul as well, and it is perfect. She has a depth for compassion that is deeper than oceans. Dip into her soul and you will come out feeling refreshed and renewed. My Sydney has a beautiful soul, and it is perfect. Sydney will carry you with her humor, her logic, the way she looks at the world - she will do that for you even when you feel like you can't take another step, she will do that for you - all you have to do is listen. Bradley's extra chromosome is merely a magnet that draws people to him, a magnet that draws people away from what they fear into a little boy's warm blue eyes and sweet smile. All that is who he is, he is here for a reason, and maybe it's to try to teach me to be a better person, I don't know. But everyday, I sit at his knee and absorb what ever new lesson he has to teach me today.
I don't know what the future will hold, no one does. When the time comes we can only hope to be guided by love AND truth...not lost on the path to one and not the other. Until then, we'll keep up on our science and the research...yet another Challenge for us. Thanks for stopping in, putting Day 16 of the "31 for 21: Challenge" to rest. Have a great night!
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