Tag Archives: parenting

Eliminating the Disease of Imperfection

Unlike my last post where I woke up feeling the need to unload what was on my heart and mind, this one I needed to sit on for a while; let it percolate . . . or fester if you will. There was an article forwarded to my wife and me the other day entitled, “Down syndrome Rewards Touted as New Test Looms”.  Within the article were results from a recent survey of parents and siblings of people with Ds as well as answers from adults with Ds themselves. In general, it said that the family’s lives had generally improved, their outlook on life was positive—both for themselves and the people with Ds—and even the people with Ds had an overwhelming positive outlook on themselves, their quality of life, and the outlook for their future.

This survey was done as a result of a new medical test being unveiled in the next few months which will be a less invasive, less expensive, earlier diagnostic tool for expectant mothers to see if their child specifically tests positive for Down syndrome. The general gist of the article was, “Hey, it’s not so bad.” And, again in general, I agree.

As most of you know, we have a young daughter with Ds, and in most every way she is amazingly . . . “normal”. There are some hills to climb, some of which I touched on in the last post, but overall she is incredibly independent, fiercely so at times and has a great thirst for knowledge and accomplishment. I would agree with the results of the survey in that, she has greatly improved our outlook and empathy towards life for ourselves as well as people of all abilities.  My son, who’s three years older than our daughter, is simply amazing in his abilities and responsibilities as an older brother, and we see a caring, empathetic side to him that may not have grown to such proportions otherwise. Because of his little sister, and how seriously he takes her nurturing and protection, he’s growing into a great young man.

Yes, there are some amazing positives to life with a child, and sibling, with a disability. It’s not all blue skies and rainbows, but neither is the raising of any child or life with any sibling: There are struggles and difficulties, some of which may be a little different than the “typical” family, but it’s simply life as we know it.

What really caught my attention in the article, and what I spent a lot of time thinking about, were quotes used from another article, “Inspiring portrait of down syndrome at odds with perfect baby pursuit”, written by Bioethicist Art Caplan, PhD. His was a much more pragmatic article on the survey results in light of the upcoming release of this new genetic test. He finishes his article in this way:

Still, the bottom line is that Down syndrome is not uniformly bleak for those who have it nor for their families. This is clearly information that ought to get more play among doctors, genetic counselors, relatives and neighbors — all of whom often weigh in with nothing good at all to say about Down kids to prospective parents.

All that said, I doubt this first-of-its kind information about the quality of life enjoyed by those with Down syndrome and those who know them best will make much difference in the decision to end these pregnancies.

Testing for Down syndrome is moving earlier and earlier in pregnancy and is becoming less invasive and much safer due to new tests that can find and analyze fetal cells in a mother’s blood at nine weeks of pregnancy. The earlier the test, the less difficult the choice of abortion becomes for many.

Add in the fact that ours is a society obsessed with perfection in ourselves and our offspring and, the climate for having kids with Down syndrome, happy though they may be, is not good.

I wanted to be so offended. I wanted to get all up on my self-righteous high horse. I wanted to be upset, hurt, insulted . . . and every other synonym you could think of. Yet, the more I thought about what he was saying, the more I realized he was . . . right.

Granted, his article is a more serious, “scholarly” approach to the reality of life with Ds. But the thrust of his writing focuses on society’s obsession with “perfection”. A quote from Dr. Caplan within the first article says, “Even though society has learned more about what Down syndrome can do, it still turns out that some prospective parents won’t be willing to accept that story,” he says. “I’m not saying it’s not important to tell that story or explore impact on families or what it can mean for the child themselves, but it may not have a huge impact in a society that’s so obsessed with perfect children, competition, better performance and plastic surgery enhancement.”

How true.

How sad.

He concludes that this new test may lead to Ds making a slow disappearance from humanity entirely.  Like small pox.  There’s only one problem.

It’s not a disease.

Down syndrome will never be eradicated. There is a difference between eradication and elimination. There’s a difference between extinction and suppression. There will always be children with Down syndrome. They just may never make it to life outside the womb. (This is a whole other topic I’m not even going to get into here.) If there’s a disease there, it’s not within the child. It’s us. We’re the infected.

When a family who is expecting twins only comes home with one child simply because the other child is “imperfect” (as in the excellent book by Kim Edwards, “The Memory Keeper’s Daughter”, of course), what in this scenario can you cure? There was nothing eradicated here, the child was simply eliminated from the family, and it (the decision) haunted them for the rest of their lives.

How do you eradicate vanity?

(If you know someone facing a diagnosis of Ds in their pregnancy, or if you have more questions on life with family members living with Ds, go to DsConnectionsNw.com)

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Our Nosy Neighbors

Do you have one of those neighbors who are always keeping one eye out the window, watching you, watching your kids, knowing their every move?

Yeah, we’ve got one of those, too.

Don’t you hate that?

Our daughter Emma was six years old at the time. One early morning, Emma shuffled out the front door in her little, pink footy-pajamas to pick up the morning paper that she’d spotted from the window. She was out there just long enough to pick up the paper, and for the door to shut (and lock) behind her.

Our neighbors, nosy as they are, were looking out their window and just happened to see her. They watched as she picked up the paper. As the door shut. As she knocked. As she rang the doorbell.

And they watch as nobody answered. And nobody answered. And nobody answered.

So my nosy neighbor watched as his meddlesome wife comes out of their house and asks if our daughter is okay. He watched as she knocks and rings the doorbell for herself…

And he watched as nobody answered. Again. Still.

So my nosy neighbor and his meddlesome wife take my daughter back to their house, where they have a granddaughter that’s a year younger than Emma. And they feed her breakfast. And they talk to her. And they let her play with their granddaughter’s toys. Until later, as they’re looking out their windows again—nosy as they are—and they finally see movement inside our house. That’s when they came over to let the panic-stricken parents know that they have our child. And she’s safe. And happy. And fed. And safe. (Did I mention safe?)

Don’t you hate that?

Our lovingly innocent six-year-old li’l girl would’ve been just fine in that span of time. It’s not like anything bad would’ve happened, right? Right?!

Yeah, right. Between her knocking on our front door and all the time spent at our neighbor’s, she was gone for AN HOUR AND A HALF!

And for the record, I think our neighbors are absolute saints. Thank God they were looking out the window at just the right time to see Emma in her predicament. Thank God they have a granddaughter of their own who is one of our daughter’s best friends. Thank God they have the caring demeanor to take her in, feed her some breakfast, and let her play with her friend’s toys—even if that friend lay sacked out on the couch due to the early hour. Thank God they have the patience to wait for an hour and a half while we obliviously wake ourselves up to whatever the day unfolds.

So…

Do you have one of those neighbors?

Thank God if you do!

P.S. Just so you know, my wife and I are not horrible parents (especially my wife . . . hi honey!) and our daughter does not go wandering off on a daily basis. Usually, she’ll go down to the end of our block, round the corner and look back, a) to see if we’re really watching her (We are), and b) to see if we’re still going to stop her (We do).

In fact, since this little episode with the neighbors, she won’t even go out the front door without one of us or her big brother tagging along, “C’mon mommy, let’s go!!”

Ya gotta love that!

The Immoral High Ground

Okay, let’s be honest here; I like women. (And in the interest of full disclosure, I happen to be married to one of the best, hi honey!) And, to be even more transparent, I have struggled—and as with any addiction, continue to struggle—with, let’s say, a susceptibility towards some of the more adult aspects of sex and female beauty . . . especially the online variety.

So, this being a warm summer and all, when an attractive woman goes by in shorts and tank-top . . . I will tend to notice. And on this particular day, and with this particular young woman, it was no different—except maybe the shorts were a little higher and the legs a little slimmer. Until I did a double-take and realized this particular young woman was, well . . . young! Possibly, if she were lucky, she may have been in her early teens.

My first thought was . . . well actually, my first thought was to wash my mind out with soap, but my second thought was, “Holy Buckets! This is so wrong on so many levels!”

First and foremost, it hammers home the fact that I objectify women: Duly noted.

Second, that women today, young and old, find it okay for whatever their reasoning to wear shorts so short that actual butt cheek peeks through when they stand with their hip ever-so-slightly cocked to one side; thereby, in my humble opinion, openly subjecting themselves to objectivity. (Go ahead; argue with me on THAT one!)

And lastly that a PARENT would be okay with their child—yes child in this case—going out of the house wearing that kind of attire. Yet, not a couple minutes after I “noticed” this young woman, here she came by once again with several siblings and . . . mom.

*Sigh*

Don’t get me wrong. I don’t in any way consider myself “prude”. Conservative, possibly. Boring, perhaps. But I also think if a woman, a woman, wears attire that accentuates certain aspects of her figure or highlights certain parts of her body, if for no other reason than she can; I have no problem with that. Argue semantics if you will (i.e. who “can” wear what), but you’ll find no objection from me. Heck, the Kardashians make a career of it! But how do you tell a person; a child; another parent, that, “you’re not helping.”

Well, I guess that’s why I’m here . . .

To you, young woman: You’re not helping. You’re not helping yourself, your self-esteem or your self-confidence. You may THINK you are—it may even seem like a power-trip or head-rush to you; eliciting the type of reaction I’m sure you’ve garnered. But the outward appearance you’ve made for yourself is not the type of crutch you’re envisioning it to be. Once you grow out of this phase of childlike face on budding, womanly body you’ll realize that those glances, looks and/or out-and-out stares are neither complimentary nor approving—that’s called “lust”.

To you Ms. Parent: You’re not helping. You’re not helping your daughter’s self-image, her confidence or her mind-set on what a woman truly is or is capable of becoming. And allowing your daughter to dress like that forfeits your right to bitch about the fact that guys—young and old—will ogle her; or that society objectifies women; or that “there are child molesters in the world, and possibly in my neighborhood and what’s a poor mother to do?” Because you’re also not helping those with a propensity towards abuse—abuse of images all the way to abuse of others.

You’re . . . not . . . helping!

. . . but for all of our sakes, put some clothes on that child!