Friday, January 12, 2007

Why It Matters

As you can tell, termination of children with DS bothers me deeply. Why? Why should I care what someone else does? After all, isn't it their lives, not mine? Most of the time, I don't care what other people do - it is their life to live, not mine. Even though I'm a Christian, I do not believe I have the right to push my views on you. And believe it or not, many people who have a child with DS are pro-choice and support abortion rights. Many are not Christians and many do not have any religious beliefs at all.

But what I do have is first-hand experience. I have knowledge that most people don't have - I know what it is like to live with a person with DS. I know what is involved in raising a "disabled" child. I know the heartaches, the work involved and the stress. I also know the incredible joy, love and rewards. I know that life pretty much goes on as normal. This is what I wish prospective parents would receive - information from someone who has been there, done that. Instead of just receiving technical, often out-of-date information from a technician or doctor.

So why do I care? Because of Ryan. Because I do not want him to feel devalued... I don't want him told that he is "less than". How do I explain to my son, who I love so much, that society thinks his life is worth less than everyone else's? How do I explain that society is working very hard at eliminating people like him? How do I teach him to deal with some, a potential employer perhaps, who thinks he never should have been born? It's not something most people ever have to deal with. But try thinking about it from Ryan's point of view.... and perhaps you'll see it from my point of view too.

But is an article that says it so eloquently.

A wonderful person I met on the internet, Betsy, wrote this piece. Here is a link to her blog: This piece is amazing and speaks directly from my heart (even though I didn't write it).

I think that what we say on the internet has as great an impact on others as our real life words do. If you think about your support system since your child has been born, wouldn't you rate this vehicle of communication very high? When you wanted to learn more about Down syndrome, didn't you go to the internet? Isn't that where the acceptance really started for you? It did for me, anyway.

This whole issue that we discussed the last two weeks became a debate on another website I visit. In essence, it turned to one of my friends saying that she would without a doubt abort if she found out her baby had DS. As the debate continued, she said it wasn't directed at anyone, and didn't effect anyone except her. She knew that I was posting and reading the thread. For a few days, I didn't answer it, feeling as you do, that my words were not going to make a change. Anyway, I ended up answering it, and I'd like to post a part of it here. I think it will explain what I'm talking about. Its really long, sorry.

Here it is: You can’t say that your opinion does not affect my family or my child. The opinion that a baby with DS is disposable, and can, and perhaps should be aborted, greatly impacts my child’s life. It impacts her every single day. It impacts people’s opinions of her. It impacts their first impression of her. It sometimes impacts the medical care she receives. It impacts her ability to be educated with her peers. It impacts her classmates, who perhaps have been told that her Mom didn’t have a choice, or didn’t know, or that ‘nowadays, doctors are able to take care of that before the babies are born.’ It impacts her sister, because when Dakotah was 3.5 years old, and showing off her little sister to her friend Michael for the first time, Michael said, “Daddy says Paige is a freakazoid.”
And you know what….it has greatly impacted me this weekend. I have shed so many tears over this thread that I have been nauseous all weekend long. It greatly impacted me, when I took my beautiful daughter Christmas shopping today, and for the first time in a very long time, spent half the time wondering if people were looking at her in pity or disgust.
It affects my posting here, because I feel very vulnerable and hurt by your words. I feel very hesitant to talk about my child, to share her pictures, or her newest achievements, because it makes me stop and wonder if people are looking at her and thinking, “Thank GOD that’s not MY child…”
It affected me a great deal this weekend, because I wanted to take my sweet baby girl and curl up on her bed with her, and protect her from the great big world who has such differing opinions of her worth. I wanted to hold this time in her life still forever….because she knows nothing but love and acceptance now. She does not know that science is working furiously to annihilate people like her…and that women are rushing to sign up for that knowledge. It affects us a great deal, because she must face that prejudice every single day – she will be the one who will have to be taught way too soon what words like ‘retarded’ and ‘retard’ and ‘mongoloid’ mean. My other daughter will have to deal with peers who will argue their desire to abort any child who has Down syndrome, and wrestle with the love for her sister over the love for her friends. So, don’t tell me it doesn’t affect me.

The view that babies with DS are disposable is what makes people tsk tsk and move away from me in a store, or makes them shuffle their kids away before they ask any questions (which I would have been happy to answer). That view is what makes the market on prenatal testing so great---instead of spending money trying to cure such fatal things as Cystic Fibrosis, or Tay Sachs disease, research spends all their time on the current ‘hot topic’ – Down syndrome. By the way, this is something you’ll be very interested to learn. Scientists are now discovering that perhaps kids with DS can be identified prenatally by a missing bone in the nasal area. (Annette's note - already discovered) This makes it all so much neater, and easier, because you can abort even sooner, and how much more convenient is that? Oh, and the added bonus is that you won’t need an amnio anymore…so there’s no chance of risking the life of a ‘normal’ baby—we know how tragic killing THAT baby might be. So, if they get really, really good enough, maybe they can eradicate every human being with an extra chromosome. And of course, with so many women blindly following their doctor’s ‘professional’ advice, it often doesn’t take much more than a sorrowful eye, or a sympathetic pat on the back, or a slight suggestion that perhaps its ‘better’ to just abort, to make a woman just learning a very frightening thing about their child decide to take the easier, tidier route out.

Of course, let’s not forget the financial aspect of it---it's neater, cleaner, easier to abort than it is to risk medical bills for a child with DS…after all, what will they ever give back to society? My child’s medical bills (ironically, NOT related to Down Syndrome) probably number in the millions of dollars. And perhaps she will never be a doctor or lawyer, or President who can ‘give back’ all that money. But most likely, she will never be in jail for killing her boyfriend, or a mother of 10 kids she can’t care for. And there is no price tag for the beautiful lessons she has taught me. Each of us should aspire to be that great of a teacher in our life times, and should perhaps use that as a scale for ‘success.’

It ticks me off, because people hold me on a pedestal…’Maybe you can handle it, but I couldn’t…” Of course you could…we can do anything we want, with the proper resolve, determination, and most of all love… I’m not special, I am no better a mother than any of you here. I’ve had no less problems because I have a child with DS…I’ve had to deal with everything each of you has in my adulthood---losing someone I love, financial problems, marital strife, etc, etc. etc. I didn’t get an instruction manual when Paige was born to me….what I did get is a clear perspective of my ability to love my child unconditionally. We each say that we could do that, but I doubt many of you have had to analyze that statement as I have. I feel badly that some of you may never understand how empowering it is to really, really learn what loving your child unconditionally means.

Perhaps you can offer some excuse for aborting that I haven’t already heard. Because none of the ones I’ve ever heard make any sense at all.

Here are the ones I hear the most, “It would affect my marriage, my husband could never accept it, couldn’t handle it.” My response: Then what the heck are you doing having children with a man who couldn’t love your children unconditionally? Why would you want to be with someone who thinks he has the right to love his family based on their level of perfection in his eyes? What are you going to do when he deems you no longer perfect enough?
“I have to think about my other kids too…” My response: That’s a great idea. Think about the wonderful lessons in compassion and acceptance you will be teaching your children. Think how secure they will feel, knowing that they are loved for who they are, not how well they score on a test, or how successful they become. Think about the wonderful lessons they will learn about the importance of other people, no matter who they are….they will learn that each of us is deserving of being loved and cared for, and that each of us is a very important part of our family and community.
“Kids with DS have heart problems, ear infections, poor vision, respiratory infections” blah, blah, blah, blah, blah." So?? Congenital heart defects are the #1 birth defect among children. I think that statistically, as many as 30% of ALL children are born with some sort of heart defect. Yet, very few of us are being prenatally screened for those, and being offered up a quick abortion because of it. And can any of you really say you would abort your child because s/he might get more colds than other kids?
“My child will get picked on.” Guess what…the reason your child will be picked on is because people believe that kids with DS are disposable…and if you decide you will not be one of those people, and surround yourself with other who believe that way, then your child will blossom. And you know what….kids get picked on for buck teeth, and big ears, and googley eyes…and not one of those kids is up for the abortion chopping block.
“You only see the people with DS that are doing really well…you don’t see the ones who aren’t.” Oh really? Well pray tell, where are the ones who aren’t doing so well? News flash…they are living and learning with their families. Paige is one of those ‘not doing so well’ kids as far as development goes….she does not walk at almost five. She does not talk. She does not self-feed. Sometimes, when people ask me what ‘new’ things Paige is doing, I have to search long and hard to come up with the tiniest thing. None of that matters one hoot in my love for this child, or her worth as a human being. Sure, its inconvenient to have to transport her right now. Sure, I had to adapt my life to learn to communicate with her. But man, I sure hope someone would do the same for me. ‘cause I wouldn’t have wanted to be deemed unworthy either.

When I was prenatally diagnosed before Paige was born, I was told she would die before or immediately after birth. I spent three months planning a funeral more than a nursery. I prayed, and bargained, and begged for one minute…just one minute to see my child alive. When I had one minute, I prayed for 10 more. And when those 10 were done, I realized that a lifetime will not be enough time to know this person who has blessed my life. Take what you want from this post…I needed to post it because someone reminded me that no one should take my words from me…especially in something this important. ~~~~~~~~ And that's it....some of it a bit angry and frustrated at someone who has known me for a long time, and who would still so quickly abort, but most of it about passion for our kids. Betsy


Anonymous said...

Well said!!! I am not sure I could be that nice to a "friend" who thought that way. I pray daily for our kids and the way they are perceived in society. Thanks for posting. I will also pray for your treatmetns that they are successful.
Laureen mother of a beautiful boy 13 mo. with Ds

bookworm said...

Thank you for this post, and for Betsy's words too. I agree completely, and couldn't have said it better...I tend to be reduced to terms like "narrowminded" and "stupid" and even "big meanie" so you can see that gets us all nowhere. I'm glad to have these thoughts, which are so close to my heart, articulated.