Tuesday, September 29, 2009

Excuses, Excuses

Ten years ago a close friend of mine came to me when she was 18 weeks pregnant and explained that her child had Down syndrome and that she and her husband had decided to abort it. She told me that the doctor said it would be a financial burden on the family and that it was unfair to their other three children.

I felt really bad for them and never gave much thought to their reasoning.

She delivered her dead child, held him and had photos taken, named him something angelic, and then had him cremated and put in a fancy urn. He took his place on the mantle above the hearth in their formal livingroom. Occasionally it would come up that they’d “lost” their son, though we all knew where he was. They went on to have two more typical boys and are just now wrapping up an ugly divorce.

I know all the excuses for why you might throw away your baby with Down syndrome. I have heard them all because I told myself each one of them after I got my prenatal dx of Down syndrome. This time it was my life, my child, my duty to give thought to the reasons why.

1. A life of suffering... I wouldn’t do that to my child. Yeah, me neither. Guess what? It is not a life of suffering. People with Down syndrome do not inherently suffer. I thought about the people I had known in my life that had Down syndrome. I couldn’t pinpoint any real suffering. They love, laugh, learn, and spend their days being generally peaceful.

2. All those medical problems... what kind of life is that? I read the long all-inclusive list of medical problems that children with Ds might have. I researched and found that while it is true that certain medical conditions are more common in people with Down syndrome than in the general population, that doesn’t mean that most people with Ds have ongoing medical problems. Some children with Ds will face congenital medical challenges, the biggie being cardiac defects.

My baby had a major cardiac defect and I was scared. But a fetal cardiologist explained that my child (like most children with Ds who have cardiac issues) had a very common defect that could be completely repaired in early infancy. Is heart surgery scary? Of course it is for the parents and loved ones but it is also just a 5 to 7 day hospital stay with over a 90% complete success rate.

Bottom line? Almost all infants with Ds who are born with congenital defects get a fix within the first year of life and from then on face only the basic bugs and boo boos of childhood like all other children.

3. It isn’t fair to our other children. What isn’t fair? The “extra attention” my little Henry might get from an early intervention specialist? That my Johnny might have to hear a nasty neighborhood kid call his little brother a disparaging name? Seriously? This is a reason to end my baby’s life?

I have another good friend who has a little brother (grown up now) with Down syndrome. In the 14 years I have known her she has never even hinted that she was unhappy about him or that she felt that it was unfair to her in anyway. In fact, she always spoke of him and treated him with love. She once told me that she didn’t even know growing up that he was considered moderate to severely mentally delayed until she read some of his paperwork years later.

The reality is that she experienced unconditional sibling love and she saw her brother work hard and consistently to achieve milestones.

Is it possible that my Johnny may experience some rough times concerning his sibling with Ds? Yes, of course but I found that there are lots of sibling support programs that can help him grow through those times.

4. Who will take care of this person when I die? I agonized over this one. I didn’t know that because of early intervention and medical advances, it is expected that kids born today with Down syndrome will live independently with minor support. I didn’t know that I could set up a special needs trust (funded by life insurance) that could provide whatever my son needed.

Eventually I decided that I just had to trust that my child would grow up to have friends, family, neighbors, and various paid staff that would care enough about him to provide any support he might end up needing.

5. People with Down syndrome have short (50-60) year life spans... how can I knowingly give birth to a child I will most likely outlive? Ok, this one came and then went rather quickly as soon as I considered the alternative, “Should I end my baby’s life so that it doesn’t have a short life..?”

6. This child will be a financial hardship on our family. I remembered what my friend had been told by her doctor. We are not rich people. I got nervous. So I looked into what exactly was going to cost so much more for this child. Housing, clothing, diapers, food... none of this would cost more. Health care? A deductible is a deductible and a co-pay is a co-pay, Down syndrome wasn’t going to change those numbers much.

Are there people whose insurance companies will deny coverage for a pre-existing condition who cannot get their child covered under Federal Medicaid? Maybe, but we are not them. Would I have aborted if we were one of them? Would I let one of my other children die if they were stricken with a life-threatening illness or accident for fear of medical bills?

7. Is it fair to have a child that will likely use more resources than it can produce? I come from a long line of working, tax-paying people. I have family members who have fought in wars to protect your freedom and lifestyle and that of our children. I (and my many childless friends) contribute to my and your typical children’s educations in the form of school taxes. My husband and I, and our family, and our friends have more than paid my son’s debt to society.

But even if that were not the case, should poor, non-land-owning people abort their children because they are a drain on our society’s resources? If you answered yes to this question, you have more to whine about than a few babies born with Down syndrome.

8. My child won’t have a normal life. What the heck is a “normal” life? I figured I hadn’t lived a normal life and I am no worse for wear... Now I know that if normal means to walk, talk, read, attend school, have friends, play sports, fight with siblings, grow into a responsible adult with the possibility of attending college and getting married, then my son is experiencing a normal life.

For a while I wanted one or more of these excuses to feel justifiable and good but none would give me the peace I needed. So my husband and I decided that Henry would live. I do not judge my friend who came to a different conclusion. But I do feel sad for her. She once confided to me that it hurts her to see my beautiful son. She has an urn and I have a lovely child full of life and laughter. And this child of mine, he blows away every excuse in the book.

Why do I care that you should know this? Because someday you might be hearing these excuses in an up close and personal way.

Written by November who was motivated by Tara (and I even plagarized her a bit)

Monday, September 21, 2009

The Skeptical OB (Part 2)

Open letter to Dr. Amy Tuteur:

You have now posted two inflammatory and misguided commentaries about Down syndrome. The first was hurtful, and the Ds community told you so. Your second post, however, is enraging. Because instead of giving an inch and apologizing for your ignorance, you have chosen to rub salt in the wound. So I am now prepared to hand your ass to you, publicly. Start thinking about whether you want it in paper or plastic.

First, allow me to definitively answer the question posed by the headline of your initial post.

Yes, we should lament the disappearance of Down Syndrome. Because not lamenting it would speak volumes about the state of morality. Down syndrome is a random mutation - it can't be prevented with a vitamin or vaccine. Therefore, the absence of people with Down syndrome means one thing and one thing only: they have been identified as having Ds and, for their crime, denied the right to exist.

It's true - snuffing out Down syndrome would eliminate mountains of sadness and oceans of tears. But it would also eliminate a lot of the things that make life memorable and joyous and SPECIAL (pun intended) for many people. It would eliminate countless acts of courage and kindness. Sweet smiles of innocence. It would eliminate a lot of songs and paintings and poems. It would eliminate tears of joy.

Amy Tuteur, you took a particularly provocative shot across the bow of the Ds community, and you were called out for it. You may be tempted to dismiss the heartfelt comments on your blog as the ramblings of a bunch of extremists or religious fanatics. And you would be wrong. They are the war cries of compassionate, intelligent, outspoken people - people of differing backgrounds and beliefs - who feel that they are being spoken FOR instead of listened TO by a person who should know better.

And now, allow me to address your second post. You have decided to defend your ignorance by speaking, once again, for the Ds community. Your defense? We parents simply must feel that anyone who disagrees with us - anyone who chooses to abort her Ds baby - is wrong. But those are your words, not ours. You have either misinterpreted the reason for our anger, or you are purposely misrepresenting our position. And I refuse to be your straw man. So I'll clarify things for you.

The people who commented on your initial post aren't against prenatal testing. Most of us aren't even asking to take away other people's right to abortions. But we know something that you don't know. We know what it feels like to live through the darkest days imaginable. We know real fear and real pain. We know how it feels to be handed a future different from the one we imagined, and to search - frantically - for accurate information about that future. We all went through this process, and we are passionate about making it as easy as possible for others who may embark on the same journey. And instead of telling those people, in their most vulnerable moment, that they are about to be forever burdened with a child who shouldn't even exist, we are here to tell them that many, many, many people have walked this path and found it to be a wonderful road indeed. It's not all doom and gloom. It's difficult, but it's not the end of the world. It can be quite beautiful.

Our stories deserve to be heard. They are credible and worthwhile and IMPORTANT! How dare you brush us aside as if we are all delusional! How dare you act as if the world would be a better place without our children! Do you really think we're just going to sit silently as you shovel that shit?

You are, quite simply, out of your league here. Your original post isn't well thought out, your attempts to defend it are twisted, half-baked and increasingly desperate. It's obvious to your readers, and it's obvious to you, whether you want to admit it or not.

Some of the comments aimed at you are harsh. I'll admit some are rude, some are a bit offensive. But I'll look past that, because those comments are a reaction to your own low blows, which are crafted to conjure a special kind of pain. I'm awestruck that you would leave such snarky comments right out in the open for all to see. I hope your children are proud of their mom as they sit and stare, slack-jawed, at your cruelty.

In closing, I want to pose a question of my own. On what day were you halved like a melon so your humanity could be scooped out and rinsed away? And I wonder what I was doing that day? Hmm, maybe I was back in college, working my part time job in the kitchen of the local retirement home. Serving food to the Alzheimer's ward. Maybe that's where I learned to have compassion for people - even those people who need assistance from the rest of us. ESPECIALLY those people.

Maybe you should have taken a job like that one.

Eh - this is starting to get a little melodramatic, even for me, so let's just wrap things up. At this point, I don't want an apology. I just want you to crawl back into your hole and try your hardest to leave the Ds community unmolested in the future. Pretty please. You do that, and I'll try my hardest to forget all about you and your blog and your amazing intellect.

Dan Niblock (Down With Oz)

Friday, September 18, 2009

The Skeptical OB

These days, after the passing of the “Prenatally and Postnatally Diagnosed Conditions Awareness Act”, one would expect an OBGYN to present a fair and accurate representation of the future possibilities of children born with Down syndrome.

Dr. Amy, The Skeptical OB, does not do this. Instead she discounts that raising a child with Ds can be an enriching experience and states that it is a "lifelong burden". She goes on to say that, “Raising a child with a serious genetic anomaly is a major burden, one that never ends and one that often gets harder as the years go by.”

When parents commented on her post saying that this is not true, she insists their opinions are simply personal experience not applicable to the overall view of Down syndrome. Ironically, Dr. Amy is NOT speaking from experience and is just regurgitating stereotypes.

Her one-sided attitudes are inappropriate given her position as an “OBGYN”... Go visit and see what you think.

Sunday, September 13, 2009

Just A Normal Guy

I'm just a normal guy. Just your everyday, average, long-haired Eagle Scout. Must be a million guys just like me. You know, straight guys who hate sports, have a passion for typography, color and design, and who have a collection of custom, handmade knives? And who love the Muppet Show?

My son Ozzie, he's not normal. Not according to the standard rubric. Mind you, he doesn't know. From his perspective, looking through those big, beautiful almond eyes, I imagine he feels quite normal. I'm not sure how I'll ever even explain the concept to him, and I hate that I have to do it at all. But he will likely have questions for me some day, questions about why he isn't quite like others. And I hope, when that time comes, I have figured out an answer.

Honestly, I'm growing tired of the whole concept of normal.

Normal - the pursuit of normal - is a fool's errand, anyway. We all think we want normal, but when we have it, we want something else. Something different. That's why people wear jewelry and customize motorcycles and avoid tourist traps and tweak their orders at restaurants. Quite often, normal isn't very interesting.

And normal is in the eye of the beholder. What's normal in Zimbabwe isn't normal in Iceland isn't normal in Australia isn't normal in Utah. There's a guy who walks around the street in front of my office every day wearing a giant hat with flowers on it and mismatched, striped socks. It's funny to imagine him waking up in the morning, slipping on those socks, plopping that stupid hat on his head - it's a routine that must seem very normal to him by now.

You really want normal? Really? Fine, you can have normal. Crank the Beatles in your Camry while you drive to the ice cream shop to have a vanilla ice cream cone (not a waffle cone or a sugar cone, just one of those normal, tasteless ones). While you're having your treat, you can think about how much you dislike Tiny Tim, flying saucers, stilettos, David Lynch movies, Antarctica, Pop Rocks, llamas, Pac Man, April Fool's Day, Pluto, the pyramids, mohawks, white tigers, extreme sports, Japanese robots and Leonardo da Vinci.

Me and Oz, we'll be having mint chocolate chip.

You know, I once drove hundreds of miles out the way just so I could make a left turn in Albuquerque (note: if you don't get that, you didn't watch much Bugs Bunny). I realize that was not normal. But somehow, even as my iPod shuffles through Italian rock music, Britney Spears, and the Wu-Tang Clan, my life - my life with Oz – feels perfectly normal to me.

Written by Dan, father to Layla and Ozzie

Thursday, September 10, 2009

Mission 5: A Tasteless Google Ad

I want you to do something for me. Do a Google search right now for "Down syndrome." Now check the ads that you see on the results page. My guess is that one of those ads - perhaps the top spot - is taken by a clinic offering third trimester abortions. I don't want to use the name of the clinic, because I don't want to give them any free publicity, but it rhymes with "Ace" Medical Care.

I'm painting a big bull's-eye on this ad. I would like to see it disappear. I don't care if someone sees it when they search "abortion," but people don't need to see it when they search "Down syndrome.' It's another example of a culture of normalization, a culture that repeatedly sends the message that it's okay to abort these babies. Some mothers will choose this route, and that's their choice. But I don't want this message broadcast to a woman who has just learned that her baby may have an extra chromosome. A terrified woman sitting alone, late at night at the glow of her computer, desperately searching for info about a condition she never really thought about. That woman does not need to see that ad at that time. It's disgusting.

I don't really know how to get rid of this ad. We could all write the clinic and ask that it be removed, but my guess is an abortion clinic has dealt with people more determined - and more vicious - than Oz Squad. I'm guessing we won't get far with that route. We could email Google. Again, Google may have no interest in deciding what ads to accept. We could all click the shit out of that ad every day. Run up the bill - those types of ads are paid for per click. However, there's a possibility that "Ace" Medical Care could petition Google to check the ip addresses of the clicks and get a refund. I'm not sure they can do that, but it's possible.

Does anyone have any other ideas? Anyone? Anyone? Bueller?

Tuesday, September 8, 2009

A New View

My little Sydney just turned two last month and my idea of normal has changed over the last two years. I got a prenatal diagnosis, so I knew ahead of time that Sydney would have Down syndrome. I remember the first thing I wanted was to talk to another parent of a child with Ds who also had additional children. I remember thinking… I want to know how “normal” my life was going to be, not how much it was going to change.

I was pleasantly surprised when I was connected to a family who had two beautiful girls, each was the same age as one of my boys. (Sydney was still cooking). We met for lunch and I watched my boys interact with her two girls, the youngest with Ds and I was put at ease. They were both just little girls. Even though their 3 year old daughter with Ds didn’t speak words yet, she understood what was going on around her and played and interacted just fine with my boys and her sister. That was all I needed.

Has my life changed since the birth of Sydney? Everyone on this OZ Squad knows that yes, indeed it did change. Would I change it? No, not at all. I have already learned so much about life and love that I would never change. Did I have fears and doubt when I was awaiting the birth of Sydney, absolutely I did, but she was designed to be exactly as she is, and I am blessed to be her mommy. Even when she is an ornery two year old… just like all her two year old friends.

Jeanette, mother to Zachary, Anthony, and Sydney