The Lovely 10%: The happiest members of a movement you won’t hear about on the news

One of the lucky ones.... (Click on picture for more information)

As many of you know, our youngest daughter, Rebecca, was born with Down syndrome.  When we found out that we were (surprise!) expecting a fourth child, we made a conscious  decision NOT to have certain prenatal tests done.  I will freely admit that I am not nearly as noble as I would like to think that I am; I didn’t want to even entertain the idea of someone asking me if I wanted to make a “choice”.

I’m not going to lie – when we got the news just a few hours after Rebecca was born, I was seriously reconsidering the decision that I had made about that testing back in the early weeks of the pregnancy.  I was so afraid that I had consigned this sweet baby to a horrible life; there were so many unknowns, and I felt so guilty for having wanted another baby – and now here she was, and she wasn’t “perfect”.

But a funny thing happened – Rebecca not only charmed her way into our hearts, she charmed her way into EVERYONE’s hearts.  And in meeting other families who also had children with Down syndrome, we discovered that Rebecca wasn’t alone; all of these kids have an extra-special something.

Rebecca at 18 months

When Rebecca was 3 years old, I happened to be “in the right place at the right time” – the person who had been coordinating the New Parent Packets for our local DS chapter had decided that it was time to pass the job along to a new person.  I was hesitant at first, but she showed me what to do, and over the next few months, I found that I really enjoyed my new “job” – as I always joked, “It doesn’t pay very much (it’s a volunteer position), but the hours are GREAT!

And oh, my goodness – how much I have LOVED having the opportunity to ease the fears of families who are just starting out on that journey that all of us who have “been there, done that” remember all too well.  The internet has made accessing information much easier for families since I first started doing this, but there is still nothing like talking to someone who understands what you are going through those first few scary months.

I am able to tell families that they will laugh and smile more than they can possibly know.  I am also able to tell them that one day in the not-too-distant future – no matter that it might seem impossible at that moment – they will look at people who don’t have a child with Down syndrome in their lives and find that they actually feel sorry for them.

Every day is a new adventure....

Most of the calls and e-mails that I get are from families who receive a DS diagnosis after their child is born.  It’s much easier to ease their fears, because they actually have a baby in their arms; for lack of a better term, they have a “known” entity.

Every once in a while, however, I will get a call or an e-mail from a mom who has received the news while she is still pregnant. And after I have answered all of a family’s questions, I always offer to refer them to other families in our group who also received a prenatal DS diagnosis, as they can answer many questions that I simply can’t, having never “been there” myself.

I have spoken with a few families who were seriously considering giving their baby with DS up for adoption after birth, but they all fell in love so hard along the way that it would have taken an act of God to pry that baby out of their arms after they held it for the first time.

Most people don't know that there is a waiting list to adopt children with Down syndrome.

Prenatal testing is a double-edged sword; no one ever thinks they will be the one who gets bad news.

And the very sad reality is that the only time I have ever gotten a call from any mom who received a prenatal diagnosis is AFTER a “choice” has been made; in the 8 years that I’ve been working with families, I can’t remember ever talking to anyone who was still trying to come to a decision.

Many DS support groups – including ours – do their best to get the word out to OB/GYNs and perinatologists in their area to let them know what resources are available to families who receive a prenatal DS diagnosis, but most of them find that the information is rarely, if ever, passed along.

In talking with the families who made the choice to continue a DS pregnancy, the one thing I kept hearing over and over again was how often the issue of terminating the pregnancy was mentioned at the time that the test results were being delivered -by the time that all of the tests can be run, most pregnancies are more than 15-16 weeks along.

A 15-week-old fetus

Some families even reported that it was just ASSUMED that they were going to choose to terminate; they were simply asked when would be the most convenient time for them to go and “have it done”.  When they said that they weren’t going to end the pregnancy, the reaction from the staff told them all they needed to know about how rarely that “choice” is made.

I have to admit – when I started doing this, I was blissfully unaware that this was such a common occurrence.  But as time went on – and experiences like this were recounted over and over again in DS chat rooms and websites all over the Internet – I started paying more attention.

And then one day, I saw the horrifying statistics: of all of the babies who are prenatally diagnosed with Down syndrome, it is currently estimated that 90% of them are aborted.

Ninety percent.

This should be the safest place on Earth for a baby

The word “decimation” dates back to the Roman army’s technique of punishing deserters, traitors, or mutineers where 1 of every 10 was randomly chosen for execution.

What do you call it when 9 out of every 10 innocents – whose only “crime” is an extra chromosome – are calmly and deliberately scheduled for execution?

Is there even a word for a loss of that magnitude?

.

[Update 11/13/11]: Had to link this wonderful post from “The Gormogons” – one of my favorite blogs – about the accuracy of those prenatal tests, and what they have ended up being used for in the years since they became available…..

[Update 02/09/12]: Had to include this link to one woman’s experience upon finding out that her unborn baby had Down syndrome; what a lucky baby!

[Update 03/13/12]: Thanks to Jen Green and Steve Deace for contacting me and including this post on their radio programs’ blog – I am truly honored!

About Teresa in Fort Worth, TX

A short, fat, middle-aged, happily-married, mother of 4 daughters. A former high school valedictorian (way back in the Stone Age), a Civil Engineering major in college, a middle-of-the-road Conservative, and a moderate Methodist. I know just enough to get myself in trouble....
This entry was posted in Down syndrome, Family, Occupy Wall Street, Think about it, Uncategorized and tagged , , . Bookmark the permalink.

11 Responses to The Lovely 10%: The happiest members of a movement you won’t hear about on the news

  1. wpdunn71901 says:

    for whatever reason, these “specials” are, for me proof of a creator
    in “Imperfection” we are shone perfection
    we learn to look beyond ourselves to see the hidden world of his grace
    May your G_d bless and keep your imperfect treasure

    Like

    • Thank you so much!

      The funny thing is that when you are the parent of kids like this, you very quickly discover that THEY are the “perfect” ones – the way that they live their lives every single moment is the way that we strive (and fail) to live our lives; they truly are closer to God than any of us can ever hope to be.

      When Rebecca was born, we were convinced that God had made a terrible mistake – we weren’t one of “those” families with perpetual haloes, and she deserved so much better than us.

      Well, we very quickly realized that God had, indeed, made a HUGE mistake – we weren’t worthy of such good fortune. We’ve kept a low profile since then, ‘cuz we don’t want Him figuring out His mistake – He’ll have a real fight on his hand if He decides he wants her back…..

      Like

  2. My first experience babysitting a DS child was in college. My anthropology prof had two children, and Peter had DS. She had asked me to babysit for her and her hubby on their anniversary, without telling me about the DS. When I showed up, she was watching me closely to see how I would react (it’s part of being an anthropologist: you don’t want to muddy the results of your study by giving away information;) ). I fell in love with both kids, and what was funnier, Peter always asked for me as his sitter, because I was a sucker and would give him as many PBJ sandwiches as he wanted 😀

    I had no idea about the statistics. It saddens me to see that we are still in the grips of the Eugenics movement. All in the name of Choice.

    Like

    • The geneticist told us when Rebecca was about 2 years old that “These kids get spoiled rotten” – it’s hard not to, when they are so sweet and good-natured!

      Now that Rebecca is 10, she is convinced that everyone around her is merely her “staff”….

      …and yes, we all just go along….. 😛

      Like

  3. Sarah says:

    Love this post, Teresa. I didn’t know about the awful statistics. I have a very positive opinion of DS kids because on my very first job out of college one of my bosses was blessed with a DS daughter when he and his wife were “surprised” when his wife gave birth in late 40’s or early 50’s. Her name was “Lisa”, and that’s ALL I heard from him–she was a charmer & the absolute Love of their lives–he always carried a picture of her in his wallet. Well, when she grew older, in her late teens, she was able to go off to some really good school, and Lisa was VERY excited about it–it broke her parents’ hearts to see her go and not be so dependent on them, although they knew it was best for her future–they missed her so much. Such a sweet story.

    Like

    • We are very fortunate to have a day school in our area that is specifically for kids and young adults with DS – they have expanded to include services for older teens and adults with DS, as we are finding a real need for that in this area (this is one of the first generations of people who actually lived long enough to need these services).

      We don’t know what Rebecca will want to do when she gets older, but we know that there are going to be resources available for her, and people who will help her sisters when the time comes that we are no longer able to be primary caregivers.

      We’re always hearing stories of families whose adult child with DS is still living with them; for most of them, their “child” does their own thing – Mom and Dad just cramp their lifestyle! But every last one of them talks about the living situation with a smile on their face – they truly are a joy to have around –

      Like

  4. Mom says:

    The most wonderful child that ever was born. She was born to a perfect family to welcome and take good care of her. Of course, I am prejudiced – I love her dearly even though I don’t get to see her as often as I would like. She was so very fortunate to have the three older sisters to interact with her and to take care of her. Also, all of the friends that you and Paul have help to make her a very well rounded young lady.
    I remember when she first started school. You told me that when she went into school, her attitude was “well, here I am – school can now officially start”. How true-she is truly the Belle of the Ball.
    I feel very fortunate to have such wonderful grandchildren.
    Love to you all,
    Mom

    Like

  5. jam2 says:

    my sister specializes in teaching children with VERY special needs. i was fortunate enough to be able to visit (several times) one of the schools that she taught at and ….wow. the children with DS were absolutely amazing. i don’t think i ever saw a frown or unhappy child. the joy is infectious. the children with Downs syndrome seemed to be very comfortable in the roll of “big brother / sister” to the other children who had much more extreme developmental disorders.
    couples who are considering terminating a pregnancy due to a genetic test result, should be counseled into spending some time at a campus like the one my sister taught at…. i am confident that the 90/10 stat would change for the better.

    Great Post!
    🙂

    Like

    • Lord knows, we try – if nothing else, if we could let these families know that adoption is a VERY successful result; once a family has one child with DS, they are usually more than willing to open their home to more!

      The FEW times that I have seen an urgent request for an adoption (usually one is given up at birth) come across the DS chat boards, the child is adopted out within days (however long it takes to get the paperwork done).

      Our DS group actually has families going overseas to adopt children with DS – mostly from Russia right now (one family has adopted 6 so far). Children with DS who aren’t adopted out over there by the time they are 4 or 5 are put into mental institutions for (a very short) life. If we can get them to the US, they usually thrive within 3-6 months after arriving, due to excellent medical care.

      Unfortunately, we can’t even get phone calls returned from most of the doctors who deal with high-risk pregnancies…..

      Like

Leave a Reply (Please be nice - my mom reads my blog!)

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s