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Tuesday, May 01, 2007

Hope and Normalcy

Today I'm joining many other bloggers for Blogging Against Disablism Day hosted by Diary of a Golfish.

Several months ago I came across a blog written by a doctor. He was describing having to tell parents their newborn most likely had Down syndrome.

He talked about how difficult it was to give, and receive, this news, and most times the family just "wants some hope, some chance that their baby will turn out normal after all." He goes on to say he doesn't usually like to take all hope away from a family, but in this situation "we simply can not tell them there's any chance their baby will be normal."

I found that very sad. No hope?

I don't envy doctor's having to deliver this news as I understand, know, and realize it isn't something a parent wants to hear...I was there myself almost 4 years ago. It wasn't news I wanted to hear; yet I wonder why it has to be such "bad" news, told so bleakly and solemnly. It's not a death sentence.

I know there are a lot of medical issues that go along with having an extra chromosome. I know there are challenges people with Down syndrome will face whether it be physically or intellectually. I know people with Down syndrome can, and do learn, along with their peers. They might learn slower, but they still learn. I know there are differences from those with Down syndrome and those without...sometimes there are glaring differences, but there is also a lot of sameness too.

Yes your child might have medical conditions and need surgeries, your child might need physical, speech, and occupational therapy. Why does that have to be looked on as a burden? What about people who need glasses to help their vision? Or hearing aids to help them hear? So people with Down syndrome need help to learn and do different things - it's not a bad thing, it just is.

No hope that the child will lead a normal life? What is normal anyway? It's all schematics isn't it?

You take your newborn home and raise your child, that is what is normal. You play, laugh, love, teach, feed, provide shelter for your newborn. That is what is normal. You're still a family whether your child has 46 or 47 chromosomes. Your child can participate in family activities and outings, playgroups, go to school. That is what is normal.

Why can't the news be delivered without saying there is no hope of a normal life? I beg to differ. I know the medical aspect of it has to be discussed, but then you deal with that and live life raising your child.

What won't be so normal anymore is seeing many individuals with Down syndrome in our future. They are slowly being wiped out by prenatal testing and "interrupting" of pregnancies (I won't get into all of that in this post)...but I did want to say something on that.

The last figures I've read said that Down syndrome occurs in 1 in 733 live births. The key word is live births. The statistics don't show how many actual pregnancies result in a baby with Down syndrome, but for those who do find out prenatally about 90% (some areas even higher) will terminate because of Down syndrome.

If even half of those terminations didn't happen can you imagine how much higher the rate of live births would be? Maybe my daughter would have a classmate or two like her instead of being the only one with Down syndrome. Maybe it would be a more common occurrence to see individuals with Down syndrome in the community and it wouldn't be such a fear of the unknown. Maybe if half of those pregnancies didn't end in a termination it would be almost, normal, to be born with an extra chromosome.

Think about it - if it's 1 in 733 live births, and 90% are terminating (those who find out prenatally) then maybe Down syndrome is a normal part of the genetic make-up, if it happens that often.

Maybe one day it will be just a part of the person, and not a defining sad moment at birth. Maybe labor and delivery rooms would sound like this,

"It's a boy! No hair, dark eyes, 46 chromosomes! Congratulations!" or
"It's a girl! Blond hair, blue eyes, and 47 chromosomes! Congratulations!"

Yes I can dream that one day society will recognize the normalcy of being different and we all have areas we need help in, but in the mean time I'm going to continue raising my daughter, 47 chromosomes - congratulations! - in a very "normal" way.

A follow-up to this post, based on an anon comment, can be found at Hope and Normalcy, Part 2.

60 comments:

LauraJ said...

very lovely and wonderful post!
congratulations on the beautiful girl you have! :D

Much More Than A Mom said...

What an awesome post Michelle. Very well said!

ChupieandJ'smama said...

Great post Michelle! When I look at pictures of Kayla or the videos you post, I never see Down Syndrome. She is a beautiful, smart, loving little girl and what could be more normal than that?
As for the other subject of the 90% that don't make it, that breaks my heart. I haven't been in their situation, so I'll try not to judge, but it breaks my heart just the same.

Nisa said...

I think you should write to this doctor and give him a link to your blog. Tell him that when he has to tell expectant parents that their child will be born with an extra chromosome to also tell them to see your blog instead of automatically implying that it's bad and not normal to raise a baby with an extra chromosome. Maybe if more expectant parents can see how other people in their shoes are raising wonderful, beautiful children who laugh, play, learn, love and feel they won't feel as though they were handed a death sentence of sorts. I'm sorry if this sounds rude, but that doctor must be an idiot. I know he's trying to be realistic and let people know what they might have to deal with as far as medical problems are concerned, but he should also AT THE VERY LEAST tell them that they as parents will also experience unconditional love and happiness. I'm so glad that parents all around the world (Thanks to the internet) can see how happy and normal your life is, and how beautiful those blueberry eyes are. love you.

Barb said...

In my opinion, this is one of the best posts you've ever written, Michelle.

I think there IS hope and it lies in the fact that attitudes are slowly but surely changing. It may not seem like it but when we realize that just a generation ago babies with Down syndrome were commonly instutionalized, we know the attitude has improved.

It's not changing fast enough though. And I cannot even talk about the pregnancies that are terminated because of an extra chromosome. It makes me too sad.

Beautiful, simple and yet profound post.

K.T. said...

WOW,I couldnt have said it better myself!!That was wonderful....I just want to copy it and paste it so I can share it...LOL
Kendall was the only one in her school for awhile and now-she has a friend who is 4 years her junior!YAY!!!
I have to share that 10 years ago when Kendall was born,the doctors told me as harshly as I could ever imagine...It started with,she will never be normal and it would be best to institutionalize her........
I dont think they were real worried about breaking to a 16 year old mother gently.My naivete is what kept my spirits up....I was oblivious,even though I knew,I really didnt care...this was MY baby,mine,regardless of what challenges she had.

PEA said...

VERY well said Michelle!!! I agree with you, a child is a child, no matter how many chromosones he/she has!! We all have challenges in our lives, no one is ever born perfect...it really does sadden me to learn of how many terminate their pregnancies because it's found out they are carrying a baby with Down Syndrome. That is NOT right at all!! I know you can't even imagine life without Kayla...I can't either:-) xoxo

Type (little) a said...

I'm ashamed to admit that I've never thought of it this way. Thank you for sharing your life in this way, so that more people can see that there is nothing "damaged" about your beautiful daughter and your loving family.

Kisses to Kayla!

chelle said...

who do find out prenatally about 90% (some areas even higher) will terminate because of Down syndrome....

Whoa! Really???? I cannot imagine ending a life on purpose like that (I am all about choice just for me). After losing a baby ... wow 90% that blows my mind ... so sad!

Shannon said...

I love it, Michelle! You did a great job. Although, when I found out prenatally about Gabi, the docs weren't totally pessimistic(Of course it could be because my perinatologist has a brother with T21), it still was very hard to hear. I couldn't imagine a world without Kaylas and Gabis.

Tracey said...

Ah, Michelle. What a lovely post. I can only hope that women who are told they are carrying a baby with Down Syndrome will read posts like this. Perhaps it will save a baby? Even just one.... think of the possibilities... Keep on expressing your heart, hon.

Dori (Aviva's mommy) said...

Very well put and very informative..I posted on my blog atoday too. Hope you do not mind borrowed the graphic you have.

Anonymous said...

Yes!

Rikki said...

Wonderfully written.

Mama Mia said...

What a great post, Michelle! You said it so well. When our doctor told us a week after birth about Grayson's diagnosis, he said he had bad news. That has bothered us ever since, and I have wanted to write him a letter with advice on how to give the news in a much more upbeat, gentler way. I just never got around to it...maybe I should make it a priority.

I have thought about the 90% that are terminated, and just want to cry. People are so ignorant as to how "normal" these kids really are. When people give me that look like,"Oh, I'm sorry that your son has DS", I want to say to them "Oh, I feel sorry for you that you have no idea what a blessing these kiddos are!" I think every family needs one of these wonderful blessings!

Mike said...

Very, very informative and heartfelt post.

Mike
http://somethingaboutparenting.typepad.com/


PS. I’ve started a photoblog at http://somethingaboutparenting.typepad.com/mike_leonen
Appreciate a visit and comments.

Trace said...

I loved this post and I totally agree with you! D and I had a discussion not so long ago about prenatal testing and were wondering what the figures were. I'm sure they're different everywhere, but when I read 90% my jaw dropped open!

Julie Julie Bo Boolie said...

Gunther and I did MSS with Sarah because we were new parents and worried. When I was pregnant with Chloe I asked him what he thought about it and we both agreed that there was no way we wouldn't love the baby no matter so it was silly to screen.

You make me very proud to know you!

jennifergg said...

Wonderful, and I agree completely...I think I even read that same doctor's post, and felt the same things!

Shelley said...

A wonderful post. As other comenters - I totally agree - as a parent of one child with 46 chromosomes and the other with 47 - I can absolutely vouch for the fact that parenting both is a completely 'normal' experience. Challenging, amazing, exhilerating, exhausting, fun ...

Tammy said...

Wow...there is so much food for thought here, Michelle. What a beautiful and thought-provoking post.

When I was expecting my first baby, the ultrasound revealed several signs that ours could have Downs Syndrome. We opted not to have the amnio, but had to keep going back for special ultrasounds. I cannot lie...it was a scary and depressing time. In our case, each ultrasound looked "better" and she was born without that extra chromosome.
But what you said makes so much sense...the fact that if you have a baby with Downs Syndrome, you are still so blessed. Blessed to have your own little one to take home and love...you are so right. The news doesn't have to be as awful as they make it.

And you have the sweetest little girl to prove it!

Blessings!

Amy said...

Oh Michelle, you have touched my heart in a very deep way once again. This is a beautiful post! I love to read about Kayla because she is so normal and is going through the same stages my nieces and nephews have gone through~such as when mom says no they go ask dad!

Dave Hingsburger said...

Normal. Why would anyone want to grow up and be ...normal. I think it would be horrible to die and discover that you were just typical, normal, average ... that there was nothing about you that was extraordinary, colourful, fanciful. Pray God, I'm NOT normal. Down Syndrome is just another way of being cool ... being different. I loved your post, really loved it. I think when a baby with Down Syndrome is borne, it's the doctor who needs to be slapped on the ass and woken up to the possibilities the child possesses in it's wonderful, not so normal, life.

Sgt and Mrs Hub said...

You are so good with words as well as getting your opinion out there in a respectful, yet unflinching way. God has given you a platform and you will do a great job however you choose to use it. Kayla is completely perfect in every way, she is just how God intended her to be - His child and a gift to you and your husband.

-Andrea

Anonymous said...

YES !!!! I agree with Nisa and all the other bloggers who commented on your blog!!!! Ditto, Ditto and Ditto..........What is normal? Like you said, bringing home your Newborn!!!!! Love Mom/Grandma

Amy said...

Yes, I completely agree. Great post!

Thanks for leaving a note on my blog. Joe turned 4 on April 24th. Our kids are only 3 months apart! I am looking forward to watching your beautiful daughter grow.

-Amy

Penny L. Richards said...

Man, I'm glad those weren't our doctors at my son's birth. What's normal, indeed! Does his diagnosis mean he'll never play ball (done it), sing in a children's choir (done it), travel (done it), have friends (he does), have fun (he does), go to school (does that too), watch Spongebob (loves it), eat ice cream (loves that too).... what DOES get leave out? Not much. And he does all of that with an abundance of joy that any child would be blessed to possess.

Beck said...

Beautiful post, Michelle.

Rebecca said...

Wonderful post Michelle.

Omaha Mama said...

Wow. Yes, yes, yes.

I had no idea so many people who find out that their baby has DS terminate pregnancy. NO IDEA. It is unfathomable. And what a loss. VERY sad.

A man on the autism spectrum gave the key note address at the conference I was at two weeks ago (one that I still have a draft post on and can't quite put into words). He gave the best speech at the conference. Put everyone at ease. Told some great jokes. Made autism spectrum disorders much less "scary". And do you know what he said? "Hey, difference is what makes the world go 'round."

Amen. And there are many "normal" doctors that I would not want to spend a minute with. Many "normal" people who are so judgmental I can barely be in their presence. And some individuals who happen to have Down's Syndrome who are my very favorite people in the world.

Different. Not worse. Not better. Just different. And that's okay by me.

Thanks for the great post.

David said...

Great post Michelle! Yep, I have a normal life with cerebral palsy too. :)

Linda said...

Oh Michelle, you cannot know how your wise, beautiful words minister to me. For reasons I can't really explain in this setting. I am comforted when I read in the Psalms that God knit us together in our mother's wombs. He didn't drop any stitches or make any mistakes. He lovingly made us just the way He wanted us to be - all individually precious in His sight.
This was an absolutley wonderful post written with much love and wisdom.

Stephanie said...

You know... I used to be one of those people who thought, "oh poor people.. their child has downs" or I was scared to talk to people with downs because I didn't know how to handle them or how to approach them. I am happy to say that I am no longer this way. Michelle, you have changed my perception of these precious little ones. They are not animals that need to be feared, they are NORMAL humans who do things a bit differently than everyone else. They need to be loved just like everyone else. They DESERVE to be loved!

Thank you for making me realize that.

Kris said...

Wonderful article, very well done!

I have often thougth that in our school district instead of 2 little 5 year olds with down syndrome, there would be 20, YES 20 5 year olds with down syndrome. But tragically, those 18 suffered death at the hands of their parents and the doctors. It is a crime.

Maybe my daughter wouldn't be the only girl with down syndrome her age for miles around.

So sad, so tragic.

Thanks again!
Kris, mom to Jennifer

darrell said...

Michelle yor words are so true. I am a person with a disability and my parents raised me as a normal child, all children have gtoood days and bad days.

The key to remember is to love your children and help them be all they can be.

Sara said...

Wow Michelle, you can write!!!! I love reading your posts!

~Melissa~ said...

What a well said post Michelle! I want to print it out and hand it out to parents everywhere.

Deb said...

Very well-written and heartfelt post!

Mayhem And Miracles said...

That was so well said. And why not? YOU know. YOU chose to parent your little blessing instead of give up before even trying. And I get to be blessed to hear of all your adventures with Kayla!

N. said...

I'd like to think that maybe, just maybe, as more kids with conditions like DS are mainstreamed, people will stop being so fearful and those numbers (90% boggles my mind) might go down.

None of my kids have DS, but when I was pregnant with my third (surprise!) child after the age of 35, I was amazed at how everyone just assumed I'd have an amnio and if the results were 'bad' I'd abort. But I couldn't figure out just what was so darn horrible about DS that I'd want to go through such an invasive procedure (I had health issues that made it even more risky than normal).

My youngest child's best friend has DS. And knowing this little girl, I cannot imagine any of my kids growing up to abort a child just because of one extra chromosome. Of course, I can't know for sure, but given their horror when they found out that kids like her used to be kept out of schools and 'sent away,' I think it is a good bet.

Maybe the kids in her school as she grows will have the same response. When we were young, we rarely saw kids with DS because they were segregated, and so they were scary unknowns. But that is changing, so maybe acceptance of a prenatal diagnosis of DS will also change.

Cheryl Wray said...

Such a beautiful post today, Michelle!! Your attitude is so wonderful and such an inspiration! Too bad that those doctors can't have you in the office with them when they give the news to parents. You would give them such hope and might save some babies as well!
Your daughter is a joy!!!

amy said...

Thats an awesome post. I dont have special needs children, but I take care of many!


Thanks for signing up for the Scavenger hunt!!!..We are having a great time. If you havent checked it out, please do.

Sandra said...

Loved this post Michelle, it's really sad to think that anyone would end a pregnancy because of Down Syndrome.

Beautiful post, thank you for this, it's an inspiration and definitely eye opening :)

Hugs,
Sandra

LeslieAnn said...

You hit the nail on the head...it is what it is.

Our children live in such an amazing time. They have so much support and love surrounding them. Yes, there are those that don't "get it" but they have no idea what they're missing out on.

And the 90%...only 10-15% of our babies get to eat ice cream, feel sunshine on their face, smell rain, have a puppy lick their face, run bare-foot in the summertime. No, Jack will most likely never be president. So what? Neither will I. If I spent my days thinking about what I'd never do, I'd never leave the bed.

We are blessed, Michelle. Incredibly blessed.

Ettina said...

I don't think inclusion is automatically going to reduce prejudice. Contact only reduces prejudice if the context makes it clear they're of equal worth. I was diagnosed autistic at 15 years old. I've never been in a 'special' class, always mainstreamed. Although I was undiagnosed, everyone could tell I was odd ('geek' was the usual term) and I, and my classmates, were bombarded from every direction (except my parents) with lessons that I was not as good as them. In the wrong context, increased contact intensifies discrimination - how many people have you heard say (paraphrased) 'I worked with those people and trust me, they are worthless'? I believe one study found that in US, some of the most racist white communities were those with the most contact with blacks. But the blacks were the poor people, the criminals, the working class, so on and so on. And the whites kept together like musk-ox surrounded by wolves.

DeAnna said...

What a wonderful post!! It makes me so sad to think that it is 90% -that's horrible. I would imagine that some of those people pass by children like your precious Kayla and see the blessing that they missed.

Trixie said...

Amen.

Anonymous said...

Not everyone feels as you do, and there are all kinds of different intellectual degrees of Down's Syndrome, some are so disabled, they can not even dress themself. If you don't see this as a disability then more power to you, but for some it is a lifetime knowing their child WILL NEVER be able to live on their own. It is tragic for some, more tragic than not having any children at all, so they decide to abort. It is not for us to judge another persons decision, each must decide for themself. It is wonderful that your child is a high functioning, high IQ, Down's child., but some are NOT. And the heart problems that go along with this chromosome abnormality is also life threatening for the child. He might have a life time of being in a Dr.'s care. Not something everyone would wish for their child. So, I personally do understan how the Dr might feel. To some people this is not very good news at all. My husband told me he would divorce me if I didn't have an abortion. He was just not equipped to have a child that would not have a chance to grow up normally. . To him, normal means, learning at a very high level of intelligence.....

Laughing and playing are wonderful, but then children grow up, and become functioning adults. What do you do if your child outlives you? There are definite questions you need to address when facing this choice.

Anonymous said...

What a good post and so true! You should write to that doctor and any other parent that has a child with the extra chromosome.When you see Kayla you see this beautiful fun loving little girl.She acts like every little kid her age.I think if a lot of parents would read blogs like yours they wouldn't be so scared and that 90% that don't make it would.
loveya,
mimi

Jen said...

Lovely. Just lovely. Thank you for saying it.

Conny said...

Wonderful - I so much agree! And you have the most beautiful daughter with the something extra - I am stunned by her beauty ... makes me wanna photograph her so badly!!!!!!!!!!

Heart of Rachel said...

HiMichelle. I'm a participant in Amy's Scavenger Hunt. Thanks for sharing this heartwarming post. It's a lovely reminder of unconditional love. Kyla is a beautiful girl. She's lucky to have such loving parents and I believe you are equally lucky to have a daughter with a pure heart.

Sue said...

Wow! You made me tear up. That was a beautiful post and SO true. We do go through prenatal testing - but we knew we'd never consider terminating, ESPECIALLY for Downs. I am a planner, and if something had been found, I would have wanted the time to learn how best to care for my child's extra needs. I too get so upset when people terminate - especially for Downs - when I know those children can lead such productive and happy lives. My Mom's friend's son has a baby with Downs. He's so sweet and precious.

You are doing such an amazing job raising your little girl. She is SO lucky to have your and your husband.

Anonymous said...

It feels so sad to abort a baby for fear of the baby not meeting your own dreams. One never knows, with any baby, what the future holds - what illnesses, accidents, genetic issues, environmental influences will be in the future. There are no guarantees. One also never knows what blessings, joys, and thrills will be in the future.
Ask any parent of a grown-up formerly "normal" newborn. The expectations are never the reality.

And, for that, I say Thank God! My children, with all their varying abilities, are far greater than anything I could have imagined. I am so enriched by each of them.

Janet

Karen said...

Love this post-- doctors really do need to learn a lesson in bedside manners and not making any predictions about anyone's future.

One of my friends is a deaf and her parents were told not to expect much-- and today, she's a doctor.

Jeff and Michelle said...

I had never thought about this. The fact we will see children being born less and less with Down syndrome. In my experience working with children with Down syndrome, I have always come away from these families feeling that they are very blessed to have the child they have. They are always the bright spot in my day!

jotcr2 said...

I love your comment, it is not a bad thing, it just is. That is a very good way of looking at it (esp when I have one of my frustrated days).

Lou Arnold said...

That was an awesome post. I agree with you totally. I didn't even want the test done to see if my child had downs. To me it didn't matter, I was going to love them the same.

I have a autistic sister who is 15 months older than me. When my mom got pregnant with me, the doctors told her to abort. I can't imagine even a doctor saying this.

Anonymous said...

Hello my name is Erika, I work for a non profit organization that runs camps for people with disabilities. I came across your blog on the down syndrome webring while looking for self advocacy articles about and by adults with down syndrome. I actually ended up printing out this entry from your blog to share with some other people at our agency. It's so refreshing to hear someone say these sorts of things. More and more adults with downs are growing up and seeking fulfillment as individuals, getting married and accomplishing things in their lives. I can tell you are preparing your daughter to be the best she can be. She's a beautiful kid, I hope someday to adopt my own beautiful kid perhaps with downs. Congratulations!

-Erika

elthomas2@gmail.com

Kelly said...

That was a great post! I agree so much with what you wrote, and it certainly needs to be read by everyone!
Thanks for getting such an important point across!