Why Are We Afraid of Down Syndrome?

EDITOR'S NOTE: This post originally appeared on Simeon's Trail on February 19, 2010. It is reproduced here with the author's permission. Click here to see this post in its original context (which may include accompanying photos), to view existing comments and to leave a comment of your own.

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Of all the things that can go wrong with a child - cerebral palsy, cancer, emotional issues, teenage rebellion (drug use), etc. - why is it that Down syndrome seems to strike the most fear in our hearts?

I'm not being judgmental...I was right there, too. When Eon was born (odds were 1:20, declined amnio) and we were told within minutes of his birth that he had Ds, I was terrified! It felt like the air had been sucked from the room. The fear abated when I finally held him and looked into his sweet face, but I won't deny that it was my first response.

I think back to that, now that I know my fears were completely unfounded, and wonder if I would've been as afraid if it had been something else. I like to think that I would've been, but I don't know.

I don't think we're really afraid of actual Down syndrome, but rather the image of Ds that we have in our heads...the adult with Ds in our childhood neighborhood with the institutional hair cut and the garbled speech...or the kid with Down syndrome at our school coming out of his special ed class at lunch who always tried to hug us...or our great Aunt Sue's memory of her little "mongoloid" brother who was a burden on the family until he died at 25.

The reality is that Down syndrome doesn't look like that anymore. Early intervention and medical advances have changed the face of Down syndrome.

First, people with Down syndrome don't suffer. This is a group that embraces life and expects us to do the same. In the words of American Idol contestant Maddy Curtis (who has 4 brothers with Ds), "They see the world in color and we just see it in black and white."

Second, they are not a burden. Babies who are born with Ds today are expected to live independently as adults with only minor support. We are seeing young adults work meaningful jobs, attend college, and even marry.

Third, they are more alike than different. Kids with Ds will learn to do all the things typical kids do...walk, talk, read, attend school, fight with siblings, etc...it just may take them longer. They can be fully involved in sports, music, dance, karate, etc.

There are some health issues associated with T21. Most are minor and easily corrected and not every kid will have them. It's absolutely possible to have a perfectly healthy baby who also has Down syndrome. Heart issues are scary, but often don't need surgery and if they do, the surgery is considered routine and has a high success rate.

If we have other kids, we're often worried over how Ds will affect them. I know I did. Good news! Siblings of those with Ds have been shown to have higher levels of empathy, compassion, and tolerance than siblings of typical kids. Aren't those qualities we want our kids to have? Studies have also shown that parents of kids with Ds are actually more likely to stay married than those without.

It's not a cake walk. Parenting seldom is. All kids have challenges. With six kids, I know this better than anyone. With Ds, at least we get advance notice of what some of them may be.

Don't Pity Me.......

EDITOR'S NOTE: This post originally appeared on Life is Beautiful on June 4, 2009. It is reproduced here with the author's permission. Click here to see this post in its original context (which may include accompanying photos), to view existing comments and to leave a comment of your own.

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I don't know why I do it. Why I cannot turn away from the news that breaks my heart. The sight of a beautiful babe gone in the blink of an eye, never to feel his mother's caress again. A mother left shaken and battered by the loss of her beloved child. The breast that aches for a nursling, the momma's heart shredded by a disease, a failed surgery, the one final attempt to save her beloved child only to learn the child would be taken from her. The heart of a mother truly left bleeding from an open hole that will never be completely filled.

Never in my life have ever been so completely aware how fragile life truly is. How absolutely blessed I am to have healthy children. My children are not medically fragile and for that I am eternally grateful. So why do people feel pity for me and my family? Oh, yeah, wait.........I remember now.

Down syndrome.

Who cares? So what! My son has 47 chromosomes. Yes, he is delayed. And yes, he does not walk (yet). But my son is here! On Earth with ME. Society, don't pity me. The shoes I wear are not ugly and they do not hurt my feet. So, society, don't pity me. Save your "I'm sorry's" for a mother who has so very unnecessarily earned your condolences. Society, don't pity me. Send your "Are you allright's" to a mother who cannot sleep at night because all she dreams of are the last moments she spent with her child before saying "Goodbye, my love." Society, don't pity me. When you see me out and about with my boys and wonder what is "wrong" with the little one, don't pity me. You see, society, I have the pleasure of taking my children with me wherever I go. I have the pleasure of knowing what it is like to hear "Momma" from a boy many women never choose to give birth too. Society, don't pity me. Save your pity for those women who fought with the prenatal diagnosis of an extra chromosome and believed they were doing the "right thing" by not birthing that angel. Society, don't pity me.

Abortion, cancer, heart defects, surgeries, MPS, SMA, fatal trisomy's and the list goes on and on. These are the takers of babes, the robbers of families that leave behind devastation in their wake. Society, don't pity me. By God's good grace, I have not experienced the heartaches out there. I have simply enjoyed the blessings of my boys, even the one with 47 chromosomes.

Society, don't pity me.

A Moment

EDITOR'S NOTE: This post originally appeared on Lila's Miracle Life on January 29, 2009. It is reproduced here with the author's permission. Click here to see this post in its original context (which may include accompanying photos), to view existing comments and to leave a comment of your own.

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I'm not sure why I've been so emotional lately but I have. I cry all the time! Not boo-hoo crying, just tearing up. Today was our first sign language class since last year and I needed to run a couple of errands before we met everyone for lunch. Lila was being CRAZY. Crazy, crazy. Typical 2 year old but she was doing everything possible to make sure we weren't going to leave on time. I'm running around trying to get everything together and of course she wants me to hold her. I thought to myself.... gosh, I only have 2 hands. Fast forward to lunch. I was waiting on my friend Pam when a mom and 3 kids walked into the restaurant. Two girls around the ages of 3 and 4, and a baby in a stroller. She sat down in a booth near us and I notice that she only has one hand. Seriously. And she's making everything work. She using her teeth and her body in place of the missing hand. Of course, I tear up, then get mad at myself for what I'd been thinking earlier. So when Pam gets there we start talking about things that we take for granted every day. This lady and her kids get up to leave and she calls one of the little girls Lila. They have to walk right by our table so I ask her - is your daughter's name Lila? That's my daughters name. So we talk for a few minutes about names and hair bows and other things. And then Pam's daughter Eliza grabs this lady's arm where her hand would be and this might sound weird but it was moment that I won't forget anytime soon. She had been admiring our little angels with Down Syndrome and then Eliza, in her innocence, grabs this lady in what must be her most vulnerable place. It was a beautiful, raw, here -we -all -are- with- our- imperfections moment. And it felt really, really good. No masks, no judgement. And when I looked in that lady's eyes, I knew she felt the same way. If only we could stay in that moment. Where we just accept each other's flaws and imperfections, knowing that we are loved back in the same unconditional way.

Sharing the News (Our Story --Part III)

EDITOR'S NOTE: This post originally appeared on Bridget's Light on April 29, 2009. It is reproduced here with the author's permission. Click here to see this post in its original context (which may include accompanying photos), to view existing comments and to leave a comment of your own.

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Making the phone calls from the hospital to share the news about Bridget’s birth and telling the other kids about their new baby sister were some of the toughest things I’ve ever had to do. Everyone was expecting the exciting details of her arrival, to hear about who she looked like, and all the other regular new baby stats. Telling people that Bridget had Down syndrome--and also needed surgery--was heartbreaking. I could hear the concern in the voices on the other end of the phone, and I tried to reassure everyone that we were going to be just fine.

I told people Bridget was a strong baby, and we had dealt with other difficult medical diagnoses. We adored her, just as we adored all of the other children, and we were well-equipped to handle the additional information that arrived with her birth.

Explaining things to the kids did not come as naturally. Sitting in the hospital room with them-- waiting for the nurse to bring Bridget to us--was not like I would have wanted to picture that moment. The kids were all crying, and although the mood in the room was calm, it was also sad. Bridget’s impending surgery was a concern for everyone, and the kids did not know what to think about the Down syndrome part. They asked if Ds was a disease, or something she would outgrow, or something that she would just live with (like asthma). Chris and I tried to answer all of their questions honestly and without adding more worry. After all, we didn’t know what to expect ourselves.

The nurse wheeled Bridget’s little isolette in and everyone got to peek at her for a very short time before the transport team was ready to take her to Children’s Hospital. The kids all agreed that she was tiny, and cute, and that they didn’t want her to be taken away from us.

It’s hard to think and write about now.

Right after she was born, I felt anxiety about what was ahead for Bridget and for the rest of us. Everything was turned upside down, and I wondered if things would ever seem “normal” again. I was concerned about her health, among other things.

I spent that first night confused, sad, and without Bridget. It was an overwhelming 24 hours, and my heart was heavy at times. I alternated between joy and despair--sometimes within the same minute. I felt both empowered and helpless. I tried to come to grips with my new reality as the mother of a child with special needs and four other children who needed me to not sink into a dark, quiet place.

A life with Down syndrome was uncharted territory--vast, weighty and scary. What was happening to our world? Would I always be worried about Bridget? Would we settle into a comfortable life and routine, or would things seem foreign forever? The responsibility and permanence of it all was completely terrifying.

Sara stayed the night with me (in my little hospital bed) and my mind drifted to how I had also stayed in a similar room alone--without her--the night she was born. It was a bittersweet time. We ate ice cream and put cold wash cloths on our faces. We fell asleep sometime in the middle of the night with eyes already swollen shut from all the tears.

The next morning, one of my best friends visited and brought two adorable outfits for Bridget and a delicious breakfast for me and Sara--it was the only part of those first few days that offered a glimpse of celebration. We left the hospital a few hours later quietly, with no fanfare, and without our baby. I felt like I was in the twilight zone for a good portion of the day, and I thought about how that day might have been different if the circumstances were not the same. I grieved the loss of the happy time it should have been.

My heart pounded as we neared the NICU later that afternoon. We walked through the doors, washed up and signed in. Right around the corner from the nurse’s station, in Bed 2, was a beautiful little girl recovering from surgery.

I recognized her immediately, and the clouds parted. As soon as I saw Bridget, all the fear and uncertainty that dominated the prior 24 hours gave way to a powerful and overwhelming sense of peace and calm.

Chris and I looked at each other and smiled. It must have occurred to us at the same time. The little nose and chin, the shape of the face, the hairline, the shoulders. Yep, she’s one of ours. She is part of our family and she’s perfect just the way she is...

All at once, I understood that Bridget is not a mistake, or an anomaly. She is the way she was meant to be, and she was placed in our lives on purpose.

She was sleeping peacefully, and I don't know if I've seen anything quite as beautiful, or if I've been as certain about anything else (aside from marrying Chris)--but I knew that I was meant to be there, and that she was meant to be here.

Seeing her laying there under the bright lights, deserving and needing to be loved—just as any other baby—I knew in my heart that I would go to the ends of the earth for her. It's true that the deepest and most honest love (true love) sees the soul, the essence of a person--their wholeness. I realized in that moment that Bridget was complete. She was perfect, and she was cherished--and I knew we could handle whatever challenges we would face with love like that on our side...

Baby Book Blahs, a Pity Party for One...

EDITOR'S NOTE: This post originally appeared on My Holland, My Italy on June 5, 2008. It is reproduced here with the author's permission. Click here to see this post in its original context (which may include accompanying photos), to view existing comments and to leave a comment of your own.

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I tried to write a few things about what Vinnie is doing now, cooing and such, in his baby book. I guess I haven't written in it since the day after he was born. Basically it has some stuff from when I was pregnant like "My dreams and hopes for you are..." and it also has the date he was born with the weight and height. So I tried to fill in some other stuff but got really pissed. "My thought when you were born were..." I thought "Wow, you have Down syndrome". I could go on with the list of things it wanted me to fill in and I have two books for him so it's double but I will just say most of the answers were "Down syndrome". I wasn't all upset about it when he was born. I knew the moment I looked at him and I was fine with it. So it wasn't a bad thing but I don't want to put that in his book.

So by now you are saying "write what you felt second, after the Down syndrome stuff". I couldn't, I got caught up in my own little pity party. Then I had HORRIBLE feelings that I am ashamed of "he won't ever read it, so why bother". What a scumbag mom!

But on a happier note I did read the "My dreams and hopes for you" section that I had filled in when I was pregnant. I am happy to report that my hopes and dreams haven't changed much. Basically I said I wanted him to be happy, no matter what he does in life just be happy (I remember my dad once told me that if I wanted to be a garbage woman he was ok with that as long as I was happy. That was probably the only thing I remember him saying, well, only good thing). Treat others with respect and if he chose to have children give them unconditional love (this was a little hard on me since they say that males with Ds can not reproduce...no mini Vinnie's).


Now that I have caused most of my family and possibly some of my new "Ds" family a little concern I will sign off. I am ok, I just needed a little vent. No need to check in on me.

Well It's Been A While...(And What Down Syndrome Really Means)

EDITOR'S NOTE: This post originally appeared on Small Acts of Kindness on December 16, 2009. It is reproduced here with the author's permission. Click here to see this post in its original context (which may include accompanying photos), to view existing comments and to leave a comment of your own.

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About 3 days too long based on my last poll :) Thanks to my votees and numerous emails/comments/requests I've had for "more please!". If I was MJ or some similarly talented individual I'd probably tell you that I love you but actually I'm just bloody chuffed...although I do love you too :)

Anyways, to be even more honest, I would have updated earlier but am just getting in to the groove of this blogging thing and am also stuffed. I just don't have a pause button. I don't have a 'me' button (though the readers of the Bikram Yoga post will be well pleased to know that I'm well on my way to Lotus posing with the best of them and the readers of the Martha blog with be pleased to know I've been cooking! With vegetables!).

BUT. I don't want this post to be about me. I want this post to be about Isabella. And I have since about Tuesday when I caught a bus with her into the city.

Isabella.

My 4.5 year old with Down Syndrome. Ya know, I just had a flash back to the moment in hospital when they told me that her having Down Syndrome was a possibility. And I just felt a tinge of sadness and a lump in my throat with that flashback (I've also just had 3.5 Drambuies on ice so that probably doesn't help :)). But it was sad. It was sad because my partner just walked in after almost floating back to Bondi the night before to a room full of huddled doctors (a senior one and about 7 other student doctors) and hit the floor with a thud when their whisperings started to get a bit coherent.

IT COULD NOT BE. NO! NO! NO!. How could they make this up! Not his little girl. Not the one that was gonna kill all the fellas with her surfing skills, not the one that was going to turn the heads around Bondi for the next 18 yrs plus, not the one that would be doing this inbetween working out what more to do with the split atom for 2027 Nobel prize win. Could they not see they were wrong??

What a strange strange time that was. Such a strange strange time. I want to go back and give that mum and dad a great big hug and say "you have no idea just how ok you will be, you have no idea just how beautiful she will be just as she is, you have no idea that one day will start to write a blog about her and your eyes will well with tears because, frankly, the light inside her makes you feel a beautiful, tender and caring love that you could not have expected".

Those that know us know that we lost another little girl 10mths earlier. Our beautifull Liljana who was born too early, much as her fight would have had you question otherwise. We then, and still now, missed her. So our resources were down. First the dream of one girl, and then the dream of the next.

And yet we still had our baby girl. But the adjustment from what we thought she may be, and the realisation that what we thought no longer mattered, was a mighty adjustment to make in 2 days. It took longer ofcourse. It took longer for R. He lost 2 dreams in less than year. It was understandable that he shoved his head so far down that sand pit that it took me virtually jumping on his back and thrashing about to pull him out.

I had my pains too. I was angry with the universe. So so SO angry. How could it do this to me?? I wasn't a bad person. I love diversity. But another load of adjustment and pain my way? Again? Why? Why? Why? Lots and lots of nights wondering why??

Soon enough (actually around the time my friend Sally popped over with a bottle of Baileys and left 3 hr later, ahem, Baileys free) my mind started to much more easily shift towards..."oh look, she needs a breastfeed, where is that nipple shield" to "oh, wouldn't that top look great on her" to "I wonder if anyone has noticed just how divine her eyes are". The mummy in me kicked in. And I am very very very proud to say in a very very big way.

But it wasn't all butterflies and fairyfloss. I became an internet addict. In the middle of midnight, 2am and 4am breastfeeds I was googling every possible Down Syndrome scenario. At 3pm in the afternoon I was googling. At 4pm I was still on. At 9pm I was still on. More, more, more. What more info was there for me to know. I was addicted to knowledge. It probably took me about 2 years to really start to kick back. A lot of mums will say they wish they could have just relaxed and enjoyed that time more. But I did enjoy Belles. I just wanted to be armed with every bit of ammunition I could to make her transition in to life outside my arms as positive, as capable, as strong as possible. I think in plenty of ways I've managed to do that. I think in plenty more ways she would have done it anyway.

It's a little late to mention this, but this post is really for those many people that asked me many times, and for those that wanted to ask. What's Bella really like? What's it like having a little girl with DS

I could tell you plenty of things. I could tell you how really, it's not much different to having another child (and I'm qualified to say this because I have another two - they can alternate between being the most divine little creatures on the planet to you wondering what on earth you thinking when you decided to procreate). I could tell you if you are a new parent that she is toilet trained, walks and talks (those big early worries) and can give a head of hair (usually her brothers) a tug so hard you would be sure there is no 'low tone' there at all :). I could tell you that I find it frustrating that it takes her a little longer to learn things. And that this is my biggest big fat cross against that extra 21st chromosome. That despite how strong her desire is, things will always take a little longer for her to learn. I could tell you, like most of us, she won't learn everything. I could tell you that oft times when she does, it will be with a lot more effort and persistence than the rest of us could even muster. I could tell you that she has the most amazing green eyes and a smile that melts hearts. I could tell you that her brothers adore the pants off of her (hair tugs and all). I could tell you that she is one hell of a clever cookie that knows exactly what she wants and doesn't want. I could tell you that some days, like my other 2, she wouldn't have a clue what she wants. I could tell you that if anything, ANYTHING ever happened to her my heart would break in two and never ever be repaired again. I could tell you that the way she greets people at the door makes her, quite possibly, the only reason anybody ever comes to visit (it's certainly not for the cooking, I can tell ya).

But I won't tell you all that. What I will tell you is what happened on the bus on Tuesday.

It was 9am. I was on my way to a course she was coming to. The whole bloody bus was miserable. I've forgetten how unjoyful people are. Not me and Belle's. She was my joy. That kid just did not stop smiling. And playing. And chatting. I did not stop smiling. She made me happy on that bus ride from the inside out. All these miserable people could do with a bit of Bella in their life.

But she's a kid right. All kids are a bit of fun (when you're not racing to work yourself - but that's another blog). No. Bella's extra. And I've known that for a while. But on Tuesday I remembered why.

On the bus ride home it was a MUCH happier bunch of vegemites (3pm - non workers is my guess, bless their happy socks). They smiled at her. She giggled back. They giggled. Grown men giggled. Ladies stopped on their way out at their bus stops. They tickled her. They high 5'd her. The bus ride was less than 20 min long. There was happiness all round and she was handing out little rays of sunshine in dosages well beyond her size and years. And then we got off the bus. And the bus driver said "goodbye gorgeous". And she beamed. And she blew him the biggest most beautiful kiss. And then he beamed and his head nearly fell of his shoulders from having to hold a smile so wide. And he blew a kiss back. And then he nearly crashed the bus driving off he was in such happy la la land.

And me? Well I was so so so proud of the beauty in front of me.

I haven't thought about the 27th Jan, 2005 for a very long time.

Tuesday and the other Tuesdays in my life are the reason why.

Thankyou Bella. Thankyou for being more than I ever thought you would be. Thankyou for being beautiful. I love you.

For the rest of you. Holy cow! You got to the end! Can you go and follow or subscribe or leave a comment or something so i know who you are :)

And a teeny little post script. Bella got up at 5am today. She took care of her dolly patiently for about 2 hours before the rest of us ventured up. But it was too early. She got tired and cranky and shovey and sooky and a bit of a pain. Coz, really, she is just like any other kid :).

And lucky for me, she's all mine.

Dovic xx

Living With a Handicap: Ten Months On

EDITOR'S NOTE: This post originally appeared on Our Jacob on September 16, 2008. It is reproduced here with the author's permission. Click here to see this post in its original context (which may include accompanying photos), to view existing comments and to leave a comment of your own.

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There is a man who walks the roads around where I work. I see him sometimes around lunch hour. His left arm seems to be twisted, against his will, straining away from him. The thumb points outwards and the palm faces away and it looks like it hurts all the time.

For the longest time I’ve been too fearful to ask. Afraid to engage. Because it’s not just the hand. He has lots of problems. There’s the stoop. He’s virtually doubled up. And the shuffled limp. And the padded, bright yellow safety helmet that suggests a wrong softness within. It lets little wisps of old man white hair poke out here and there. Today in the slim breeze by the rail crossing those wisps seemed to reach for me and repel me at the same moment: Stay away. I’ll make you confront your good fortune and your cosy life and things might not ever be so comfortable again.

I should have stepped back.

But I am not myself these days. Changes happened back there somewhere. If the little boy in The Sixth Sense could see dead people, then I seem to have acquired the gift of seeing live ones. Ones who had hitherto been marginalised by the fit, healthy Leni Riefenstahl-sponsored part of my brain that refused to look directly – really, truly look – at anybody with an obvious mental or physical condition. What if they tore my comfort zone from around me? What if… what if I caught something from them? The cells of my fit body would recoil from the very thought of such grotesquerie.

Until Jacob.

Leni Riefenstahl my backside. God has no more love for my beautiful chromosomal symmetry than he does for my ‘damaged’ son’s awkward perfection. And something happened inside at a level that I don’t ever expect to understand. I saw beyond, to what the old man was. Not some sideshow freak, but a man with more difficulties than me.

The barrier was still down, the DART pulling out from the platform towards town. The helmet looked uncomfortable. I leaned down and saw the person in his eyes. I’ve been so foolish for so long. I smiled a smile that reflected, I hope, the love I felt for humanity.

‘How are you getting on today?’

‘Oh fuck off and ask me arse.’

Apparently, I'm a Pollyanna

EDITOR'S NOTE: This post originally appeared on Simeon's Trail on November 3, 2009. It is reproduced here with the author's permission. Click here to see this post in its original context (which may include accompanying photos), to view existing comments and to leave a comment of your own.

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Last week in the UK, news broke that women were experiencing more Down syndrome pregnancies, but fewer births. The increase in pregnancies were related to more women delaying childbearing. The decrease in births were related to "better" screening procedures with more terminations. In reading the articles related to these findings, I found myself reading the comments sections...again (when will I get a clue?).

Comments always seem to follow a pattern...someone comments that they had a distant relative with Ds and that person was a drain on the family, and then the siblings got stuck taking care of him. Someone else comments that it's irresponsible to condemn a child to a life of "suffering" and termination is a good alternative. Then, a parent of a child with Ds will chime in and correct some misinformation which has been spouted and communicate what a joy their daughter is and how children with Ds are more "normal" than not, etc.

There will be a lot of comments following in the above vein, until someone comes on to accuse all the parents who are being positive of lying. That anyone who claims that raising a child with Ds isn't a horrible experience is delusional and a pollyanna. (I've read the original story of Pollyanna. Since when did finding the silver-lining become a bad thing?)

I recently heard something similar from a woman who is considering terminating her pregnancy because of T21. She said that the advocacy groups only post the positive and she could practically see "the cute little bunnies hopping across the page". She was asking those who have already terminated what it was really like to have a baby with Down syndrome. Um, seriously? I don't think they know...they aborted.

Why can't the critics believe the people who have been there, done that? Maybe having a child with Down syndrome is a positive thing. Why is it so hard to believe that we really love our children, that we are proud of them, that we have learned from them, and that our lives with them are normal? Why is the burden of proof on us, for crying out loud. And, why on earth would they think we have reason to lie about it?

Leaves a bad taste in my mouth. I have got to learn to stay away from the comments section!