Wednesday, February 19, 2014

Who Needs Rules?

My son, Charles has no use for arbitrary rules.  Real rules, like safety-type rules, he is mostly down with.  At least, the ones he agrees with.  The fact that he cannot drive a car because he:  

a)  is too young to get a license
b)  is unable to pass the written test
c)  has 20/375 vision

does not sit well with him.  If there is a way to get a license, then, by god, he will get one with his will.

Thankfully, I have another year or so to cross that bridge (and maybe move to Wyoming, where his driving probably won't kill anyone).

Anyway, back to Mom's Arbitrary Rules and the reason for this post. We have the same fight, every day over what shelf the acne treatment pads should go on.

I know.  It sounds silly even as I type it.

Here's the thing, though.  IT DRIVES ME CRAZY!  I have them put away, neatly, on the lower shelf behind the cabinet door.  Invariably, the next time I go into the bathroom, they are on the top of the cabinet.  Every time.

My house is not haunted.

I don't have little demons moving things around, trying to freak me out.  Even if I did, I would hope they would do something a bit more interesting than move Charles' acne medicine.

No, this is Charles telling me exactly what he thinks of my stupid rules.  Because, really?  Is anyone going to die if the stupid acne pads are on top of the cabinet?  No.  Mom is just going to go a little bit crazier.  And isn't that the end game?  Making mom crazier?  Because crazy mom is HILARIOUS!

I used to think so, but now I am not so sure.

I think after awhile, after so many years of people telling you that your shoes go on the other feet, that the dirty plates go on the right side of the sink AFTER THEY ARE RINSED, that you CANNOT DRIVE MOM'S CAR, you kind of need to rebel a little.

I want my kid to buck the system.  True, that he is bucking MY system kind of makes me nuts, but do I really want a kid that is going to just follow along with any old thing any random person "in authority" says?  


I want my kid to push back against those who will tell him what he can and cannot do without giving him the why.  Because some of those whys are arbitrary.  

"It's the way things are done"  is arbitrary.  It's also a cop out.

So, buck that system, my Charles.  I'll be right behind you, with bail money if need be.

Friday, February 14, 2014

Okay, Denmark...You've Got My Attention

I once spent the day in Denmark.  Well, I guess it was two days, one day coming and one day going.  I was trying to get from Helsinki to Lausanne, Switzerland and I had to take a bunch of boats and trains.  It was a long time ago, so excuse the sketchy details.  The only thing that I really remember is being pretty well broke by the time I got to Switzerland.  I ate a lot of leftover bread on that trip.  Ah, youth!

Anyway, Denmark has been on my mind, lately.  Even before the news of the unfortunate giraffe, Marius, reached me, I had been thinking about what kind of society they had there.  Sure, it is a happy society (see this survey) and maybe that is part of what scares me about it.  As soon as I heard about Marius I (for now it appears there is a Marius II; note to self:  Don't be a giraffe named Marius in Denmark), my mind went to thoughts of the Down syndrome population in that country.  In Denmark, like most Western countries, Down syndrome births are dwindling (check this out).

I don't want to get into the whole subject with much depth here, mostly because I don't want this post to go on for days.  Suffice it to say that I have a problem with people thinking that this is a great thing.  It really bothers me that some people think it's a great thing; mostly, because I have a son and friends and other people I care about that have Down syndrome and I think a world without them would be decidedly more...sad.

So, I just kind of wonder what kind of great society promotes the killing off of those who are seen as unneeded or unwanted or less-than?  

What does it say, when a zoo helps to create, names, raises and then decides to kill a young giraffe...oh, and cut it up in front of cameras for the kids to watch.  Good times!  But, seriously, what does this say about what life means to these people?  Life is good only if it directly benefits (read:  makes money for) others?  Life is only good if you are born the right height/weight/sex/color/creed/national origin/sexual orientation/with the right number of chromosomes?  

What did this giraffe do to deserve to be fed to the lions he shared the zoo with?  

I've read some of the comments about the subject and many say things along the lines of "giraffes are lions natural prey, anyway" and "you would just have to kill a cow instead, so what is the difference?".  I can kind of see where they are coming from.  After all, a cow's life is as important to that cow as Marius' life is/was to him; but there is something about breeding this animal, wanting him until he was deemed unnecessary, then killing him that is deeply disturbing.  And it reminds me of the free, prenatal screening for T-21 that Denmark offers.  And it feels icky.  And I get that a giraffe is not a person.  It still feels icky.

If you don't love a person with Down syndrome, maybe you don't understand what I am saying.  Maybe you think I am crazy.  Maybe YOU think it's a great thing to eliminate Down syndrome and with it, part of what makes my kid MY KID.  I would ask you to keep an open mind, though and hear me out to the end.  

Do you know someone with Autism (prenatal test)?  Do you know someone who is gay?  Because guess what?  With all the genome testing that is going on, prenatal tests are coming for those conditions as well, all in the name of "advancing human health".  What does it mean for us as human beings to choose to eliminate traits that are a natural part of the human condition; not diseases, not conditions incompatible with life, but traits that could be seen as less than desirable?

And even if diseases like cancer and heart disease and schizophrenia could be diagnosed before birth, what would we do about it?  Since just about everyone will get one or the other at some point in their lives, COULD we do anything about it?  What if you found out at age twenty that sometime before you turned fifty you would have a massive heart attack?  It's quite likely, actually; much more likely than being born with Trisomy 21.  Would you want to be shot in the head to spare you the misery?  Or would you want to fight for your life?  

Human beings are beautiful because of their differences from one another.  One race, hair color, orientation or neurology is not necessarily better than another.  Should we, who have apparently "won" the neurological lottery, have control over the fate of those who haven't?  And if so, are we conducting our own, decidedly less messy, though no less troubling, form of Aktion T-4?  

I worry about where we are headed.  I worry that we don't learn our history lessons.  I worry that in our quest to become "better", we will wind up bereft. 

Wednesday, February 5, 2014

Sentimental Me

Maybe it's foolish.  I've been called worse things.  

It's easy to become sentimental as you get older, but I was born that way.  From as far back as I can remember, I saved little things.  I had a terrible time parting with anything someone I loved gave me, whether it was a plastic ring from a gumball machine or a stuffed animal or a birthday card.  

When my Mom, or grandma, or grandpa would kiss my cheek, I would be careful not to rub it and could feel it, lingering there, for a long time afterwards.  

The one and only year I went to camp, the girls in my cabin were mean and clique-y.  Though I felt a bit lonely, the fact that they weren't nice to me didn't bother me as much as the fact that they wrecked the bed that my mom so nicely made for me before she left.  All those thoughtful, tight tucks, undone in a fit of eleven year old menace.  

If you look in my purse, I know you will find at least one old shopping list written by my Mom and a note about my worn out tires from my Dad.  In the kitchen drawer, notes from my Dear Husband about slippery roads, hot coffee and cats.  On the top shelf of the closet, nearly every drawing, project and card ever made by my children and birthday cards from relatives dating back to the 70's.

My father's mother passed away last April, but her voice is still on my answering machine.  I'd still have my other grandmother's voice as well, but her last message to me got erased.  Believe me when I say it really bothers me that it's gone.  I also had my youngest son's voice on there, from the day he first rode his bike (alone!) to a friend's house.  He called as soon as he got there.  "Hi Mom.  Well, I just wanted to call and say that I made it and I'm fine.  Well, see you later.".  You see, I have it memorized, even though it too got erased when we had to get a new phone.  

Books and clothes and televisions and cars and other things, I have no problem giving away.  I don't get attached to big things; not really.  I'd rather someone else have them, if they can be useful to them.  Over the years, I've managed to pare down the sky high pile of letters and cards to a more manageable amount, as well.  Now, instead of every birthday card my great grandmother ever sent me, I only have one; but I won't part with it.  

I still have my favorite childhood stuffed animals and every silly letter my husband wrote to me when we were apart for four months the year we got engaged.

I worry that I haven't taken enough pictures, spent enough time, taught my children all the things they need to know from their mom.  I worry that they'll grow up and leave and I worry that they won't.

I want to take all these things; the papers, the pictures, the voices and the worries and lock them away in a time capsule.  I want to cement them into the cornerstone of my life; knowing that these things are only a small representation of what really matters.

Here and now, what I have shared, what I remember, who I have loved, who knows that I love them; those are the real things worth keeping.

Saturday, February 1, 2014

My old blog

Here it is! :

Hard to Find the Words

You can probably tell by the fly by the seat of my brain writing style that I usually just plow right ahead with whatever I am thinking about.  Today, I am having trouble.

I came upon a website in a roundabout way yesterday that left me with so many sick and angry feelings, that I had a very hard time digesting what I was reading; in fact, I still haven't quite reconciled all the feelings I had.  I might never get to that point.  I am not going to post any links to it, here, but a tiny bit of searching will lead to what I am about to reference.

Someone had posted a question in one of the groups I am involved in asking what kind of support we had when we found out that our children would be born with Down syndrome.  I read through the answers, seeing much of my own experience, until I came to one that said something about being referred to a support group for women who ended their pregnancies.  

I was a little bit taken aback by the assumption of this doctor, referring a woman with a still living, moving fetus in her womb to a support group like this, but quickly recovered.  The doctor might have been jumping the gun, but women can and do end their pregnancies for all kinds of reasons.  I can understand needing a place to work through their feelings.

I am not saying that it makes me happy that a woman would feel the need to end her pregnancy based on a T-21 (Down syndrome) diagnosis.  I'm just acknowledging that it happens.  I don't wish to drag these women through the mud.  There are so many complex issues to the dilemma that factor in:  Lack of updated information, fear, outside pressure, stigma, serious heart conditions, just not feeling "strong" enough... I get it.  I really do.

That a woman might make this decision at all is not what bothered me.  At least, that's only a small part of it.  It does bother me because I take it as a reflection of how people feel about my living, breathing kid.  I take it as a slap in the face; but I know that it truthfully has nothing to do with me and my kid and everything to do with what that woman feels to be true for her.  It isn't about me and I don't wish to make it about me.  It's just hard to separate, sometimes.  Her body, her decision.  I understand and agree that this is the way it should and must be.

What really bothered me was reading how some of these "procedures" take place.  I read accounts of women who got a T-21 diagnosis at 20, 24, 26 weeks, who decided to end their wanted (until this point) pregnancies.  Many of the stories recount tiny babies born alive (after induction) only to die in their parents arms.  Babies taking a few breaths, just to die, as their parents whispered to them that it was for the best.

It was for the best, they told themselves and their babies and they took inkings of their footprints and pictures of their dead children and had them cremated and put in tiny little urns as if they just happened to die and they, as parents, had nothing to do with that process.  They talked about being sad over their "lost" babies.

This was where I began to lose it.

I began to think of all the premature babies I have known and the lengths that their parents and doctors had gone to to keep them alive.  Why does one baby born accidentally at 20+ weeks get all the medical intervention we can throw at them and another get to gasp and die?  

I thought of friends who had had miscarriage after miscarriage; who truly LOST their children.

I began to think of the friends I have whose children are battling cancer and kids who have died from childhood cancer and the Grand Canyon scale difference between these children's parents and those that I was reading about.  

I read one account where the parents justified it saying that if their child had been in an accident and was on life support, they would have had to make the same type of decision.  I completely understand this logic if a fetus' condition is incompatible with life.  There are plenty of complications that fall into this category, but Down syndrome is not one of them.  Yes, babies with Down syndrome can have major heart conditions, kidney issues, feeding issues...the list is long.  But most of these issues are correctable.  With intervention, the vast majority of babies born with T-21 will not just live, but thrive.

There is also plenty of debate about how much intervention is too much and I completely understand it.  I've often thought about babies I saw when my son was in the hospital that had never in their short lives left the ICU or been off a ventilator.  Some were three and four months old.  It is worth noting that none of them had Down syndrome.  One baby in particular caught my attention as he was learning to smile around the vent tube that had been down his throat since he was born.  It was truly the saddest baby smile I have ever witnessed.  I want to cry thinking about it now, even fourteen years later.  I pondered over his suffering, for I have no doubt that he was suffering, despite his early, baby smiles.  Entering the world too early, with unripened lungs, into bright lights and needle pokes and tubes shoved down your throat is really no great way to come into the world.

I often wonder what happened to him.  

All this begs the question:  At what point does it become worth the fight?  Understandably, it is different for everyone.  I think about Christopher Reeve and his fight after he became paralyzed and dependent on a ventilator and a wheelchair.  I think about the people I know who are dependent on various interventions to live.  I wonder at what point they would feel like their lives were not worth living.  Mostly, I see people who are at peace with their circumstances.  Whether you want these circumstances for yourself or your child is mostly irrelevant.  Most of us will never know what it feels like to be in those shoes.

So, what of these parents who decide to let their children go?  At first, I read these late term abortion (induction and delivery) accounts with disbelief, then, white hot hatred.  How DARE they write about how sad they were!!!  THEY CHOSE TO DELIVER THESE BABIES TO THEIR DEATHS AND HELD THEM WHILE THEY DIED!!!  FUCK THEIR SADNESS!!!  

Then, I calmed down and started wondering where the line between abortion and straight up killing, was, because this didn't feel like abortion to me.  It felt like killing.  I began questioning my own pro-choice views.  I came to the conclusion that I am still pro-choice, but that the area of gray had narrowed, somewhat.  I have always found late term abortions troubling, but conceded that they needed to be legal.  I don't want women to be incubators for children they don't want and adoption is not the easy alternative that some would want you to believe.  Yes, it's an option, but not one that I would want forced on anyone.  There are plenty of kids languishing in the system, already.

In the spirit of full disclosure, I had an abortion myself, in my early twenties.  I don't regret it and I don't feel guilty about it.  The way I think about it, I might not have the kids I do now if I had carried on with that pregnancy.  I might have married that other guy.  In my view, I saved the beautiful family I have now by sacrificing those cells years ago.  Maybe you will call me a hypocrite.  Who am I to judge anyone?  I also have the benefit of hindsight working for me.  Women who chose to end their late term pregnancies because of Down syndrome don't have this luxury.  All they can see is NOW and the future is a scary unknown.  I'm sure that plenty of these women will hold up their "rainbow babies" (a term used for a baby born after a miscarriage, but apparently, also after an abortion) as justification for their decisions.  It's not my place to judge or question them.  I can only speak about my own feelings.

I don't know where to draw the line for anyone else.  It's not my right to draw that line.  All I know is that I am troubled by this discovery.  I am saddened and shaken that someone could think so little of a kid like mine, with his messed up heart and his humor and love of WWE, that they would let him die rather than fight, but again, I am making it about me and my feelings.  Hindsight might give us blinders.

I read an interesting blog post the other day; written by a woman whose son died from serious congenital defects after battling and suffering for the better part of his short three year life.  She wrote that if she had known what was in store for her son before he was born, that she would have had an abortion rather than put him through what he eventually did.  Again, hindsight in action.  Her story made my heart ache for her and I take her at her word, that she loved and wanted the best for her son; even if that meant not letting him live at all.

So, what is the difference?  You might be wondering.  The difference is that my kid and kids like him don't suffer from Down syndrome.  They are living and thriving into their 50's, 60's and 70's.  And I look at my son and wonder what about him is so horrible that you can't imagine being in my shoes.  And I am trying, mightily, to put myself in yours.  I was there, fifteen years ago and I chose my son. I realize that fact colors my every thought on the subject.

I don't wish to judge or condemn or ridicule or belittle anyone else's choices and I certainly don't want to become a spokesperson for the anti-choice movement.  I believe in choice.  I just know that I am troubled and that I wish to get to a point in our history that sees Down syndrome in a better, more realistic and hopeful light than it does now.