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Gifts : Mothers Reflect on How Children with Down Syndrome Enrich Their Lives

The Gifts Outreach program provides complimentary copies of Gifts to organizations which serve parents facing a new diagnosis of Down syndrome for their child, either prenatally or postnatally. We believe that the stories in the book provide a vital companionship and support for such parents.

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Tuesday, October 18, 2005

Why Does Termination of Children with Down syndrome Affect us so deeply?

Many who contemplate abortion of their prenatally diagnosed child with Down syndrome don't understand why their decision to terminate even remotely has anything to do with us, our families, who have a member with trisomy 21. No, its not that we are all holier than thou moralists that want to push our views upon you. Many of us are pro-choice and others are pro-life, many are christians and some are atheists. Its because we know something you can't know yet, and have it to share. We have knowledge that is just isn't like the Drs. and others paint our lives and our children's lives to be. Please, become informed. And really listen.

This is why termination and prenatal testing used to eliminate babies with Down syndrome affect us so deeply. It is elegantly stated in today's Washington Post, The Abortion Debate No One Wants To Have, and also in the following old online post, my personal favorite, by our friend Betsy:


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. Btw, 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. (Mauzy 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---its 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.
Let's keep sharing our views, maybe they will be heard and understood someday soon. And if you read this and don't have a child or adult relative in your family you might not understand. But know that we see our children as the same as yours, value them, love them, and sometimes I think we do see them as a bit more "special" to us, and hope you see that someday too.


Unknown said...

Thanks for posting this Mauzy!

The only way I know to share my views on this topic [which I believe to be pure EUGENICS, plain and simple....and NO reasoning to justify the selective termination solely on the diagnosis of T21 is justifable] is to share the magic and wonder of my daughter who happens to be sporting an extra chromosome on her 21st pair.

To me this is not truly an 'abortion' issue. Growing up in the 60's & 70's and watching closely the whole 'Woman's right movement' and 'Roe vs Wade' has left a very strong impression on my [as a woman] that the 'abortion' issue is played out within the first 12weeks of gestation. [Which I believe is the reason so many companies are racing to try and find an earlier and earlier test for T21].

To abort an unwanted pregnancy [for a woman's rights] can and should be performed within that 12week guideline [not agreeing with abortion,,,,I believe it is a very difficult and personal choice] BUT to 'deem' a WANTED pregnancy as 'imperfect' and thus able to distroy based on T21 [or any other identifiable disability] is PURE discrimination.

Thanks for posting this Mauzy.....and thank you for the beautiful gift that is Nash!

Anonymous said...

You know what really kills me about this--that "contribution to society" is measured strictly in dollars and cents. Make guns that kill people, advertise cigarettes to kids, and you're "contributing to society." Live in a residential facility and bring smiles to everyone you know, and be a "drain on society."

I hate that.

BStrong said...

Hey Mauzy,
Thanks for posting this. Your friend Betsy certainly hit the nail on the head. What she said about a large percentage of the medical professions first response to expecting mothers is very true. When my wife had her ultra sound that showed a soft marker (echogenic focus) which was not conclusive, the doctors did make us feel that we have the option of aborting. My wife and I would never do such a thing, but I'm sure comments made by a physician to other couples during that emotional moment would contemplate termination.

Thank you

Jan Steck Huffman said...

and thank you all for your comments. We are trying to reach out to those with prenatal diagnosis, and every little bit helps!

~*Radonna*~ said...

I usually know what to type when I am feeling so much. Usually words just pour out of me but tonight I am truely in awe.

Your post touched me very deeply. I wish I had the words. It was beautiful and Thank you will have to do.

Anonymous said...

My wife and I just had an amniocentisis performed as the ultrasound screeening points to DS. Baby has a medium sized hole in his heart, small tummy, and femur etc... Your article and these postings have given me another view and as we don't have the results of the test we can't help but think what if's. I'm glad I read your post. It's tempting to consider termination, depending on the results but very difficult to think of not giving him a chance and abandon him.