If you're only going to read 3 paragraphs, read the last 3.

Sep 28, 2005 20:36

At work we're allowed to listen to whatever we'd like to, so long as it's from our computer, and we keep our headphones on. Until recently I'd been taking advantage of this by finally learning all the words to Ace of Base songs, (kidding! Geesh, get that sour expression off your face, I was just kidding) but over the past couple of weeks I've finally succumbed to the temptation that is my departmental "book" club. I've always wanted to join a book club, mind you, being the bibliophile that I am (I referred to myself as a bibliophile to my mother recently, and was rather dismayed to discover that she wasn't familiar with the word, it rather boggles my teensy little brain to think that there are folks out there who aren't so obsessed with books and language that they bothered to find out what the word for their particular ailment is) the idea of getting together, over a nice cup of tea, with some interesting individuals and discussing the moral, political, emotional, or what-have-you implications of the book-du-jour has always appealed to me, but alas, it's an experience I've yet to have. So initially, upon first joining my current department, I all but jumped at the idea of a book club, until it became clear to me. They were not talking about books they were talking about books on tape.

But here I am, over six months later, finding myself just a little bored with my job. It's not difficult, and I'm not learning anything anymore, so when a co-worked advised me that he had Harry Potter on CD, I figured what the heck, might as well give it a shot. A few weeks later I'm a relative addict to books on "tape." My productivity is nearly half again what it was (which was already impressive for my department) and my job satisfaction level is up as well. Sadly, there are only so many Harry Potter books (exactly 3 that my co-worker owns, and I'm not about to go out and spend the $75 myself) and at the end of last week I found myself a fish out of water, with no story to accompany me on my day, to guide me through the trials and tribulations that are my job, yeah, basically, to distract me from the monotony that is paperwork processing. Then, like mana (should that be capitalized?) from Heaven, I hear over the cube wall that another co-worker has just visited the library, and has come back with a fresh supply of books. Of course, no new Harry Potter, but something, anything, to help me get through (yes, I'm well aware that I sound like a junky, and no, it doesn't bother me) my day is more than welcome, and this is how I came to "read" "Jewel."

It wasn't a great book, really, but it was interesting, and it got me thinking. It was exactly the sort of novel I ate up and spit out as a pre-teen. More than a little depressing historical fiction. Naturally focusing on hope, dreams, God, ambition, failure, trauma, adversity, rising above one's station in life, you know, all that shit. Not enough unlike "The Grapes of Wrath" for me to avoid making reference to it, but still it's own book.

A large part of the story centered around the birth and life of a "Mongolian idiot" as Brenda-Kay was originally referred to by her doctors, (there was a lot of terminology in the book that made me squirm with discomfort, a little over halfway through the main character was chastised for a particular word she had used, [quite liberally] throughout the book to that point, and was informed that the people she was referring to should be called either "Colored" or "Negroes") a child who was the 6th and last child in this family, who would never test above the level of a 6 year old, this little girl that was never supposed to live beyond 2 years of age, who grew into a strange sort of adulthood that is foreign to me and my life, and it brought to mind questions that aren't new to me, questions I have pondered over, time and time again, questions I don't imagine I'll ever know the answers to, but that nearly plague me, questions I'd like to ask you.

What would you do? What would you do if you found out you were expecting a child who would never mature. There are tests they take now, tests that can determine if a child will be born with particular mental deficiencies, so what would you do if it was your child? Your little baby that would never grow up?

But that's the easier part, at least for me. The harder part is what to do once the child is born, once you have held your baby in your arms, have sung it to sleep, fed it, changed it's diapers. What to do when you finally have to admit that something isn't quite right with your beautiful child who has 10 fingers and 10 toes, when you take your baby to the doctor, fearing the worst, but not even comprehending what that might be, and the doctor tells you your child isn't normal, will never be normal, that no matter how much you teach him, read to him, love him, no matter how good of a parent you are to him, he will never be a man. Now what do you do? When the doctor gently recommends an institution that can give your baby the care he needs, suggests that it might not be fair to your current or future children to be saddled with the burden that is this baby you hold in your arms, how do you decide? How do you live with the guilt, no matter what you do? The guilt of giving your baby over to strangers, doctors and nurses who will poke and prod at this child of your flesh, who will feed and clothe him, but will never love him, or the guilt of sacrificing your life, and the lives of your other children, the life of your husband or wife, to take care of his needs. So what do you do? How can you do it?

Again, I just want to say that I don't know. I have no judgment for those who have made either choice, no way to even begin to comprehend what doing so might feel like. I don't know what I would do, and I hope I never have to know. I hope this is merely an idle musing of a twenty-something girl who is bored and lonely on a Wednesday night, and that whatever you may say, whatever thoughts you may add, whatever answers you may have will be informative and thought provoking for me, but nothing more. I hope that this is not a decision you or I will ever face.

downs syndrome, books, children

Previous post Next post
Up