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Monday, August 06, 2007

Hope and Normalcy, Part 2

3 months ago someone anonymously left a comment on my post Hope and Normalcy. (If you want to read the whole comment just click on the post link and scroll down through the comments - I'm just going to quote some things in my post.) I wish I would have addressed her comments right away, but I needed some time to think about what I wanted to say. Then we left for our 3 week vacation, and it's just been one thing after another. I haven't had a chance to sit and compose my thoughts. I'm sure by now she's not even reading my blog anymore, but on the slim chance she might be I wanted to post this.

Anon said, "Not everyone feels as you do" - I'm aware not everyone does, that's why 90 percent of women who find out prenatally that their baby has Down syndrome terminate their pregnancy.

Actually I'm not really sure what anon is referring to about how I feel. The way I feel is that I love my daughter as any parent loves their child and I just try to advocate on her behalf.

Some may say I was never put in the position to chose because I didn't have an amnio to confirm the diagnosis (which is true), but I did make a choice. I knew my AFP results showed a higher risk for my age of having a baby with Down syndrome. I chose NOT to have an amnio. That meant I CHOSE to have my baby, regardless of the extra chromosome or not.

Anon said, "To some people this is not very good news at all." You know what? I agree. It wasn't news I wanted to hear either. I didn't go into my pregnancy thinking, "oh I hope my baby has Down syndrome!" Who does? (Although there are couples out there who specifically request and adopt kids with Down syndrome, and there is a waiting list of these couples hoping to adopt. So yes, kids with Down syndrome are wanted and adoption is a very real option.). It was quite the opposite for me. After my AFP results came back I went to bed every night praying, "Please dear God don't let my baby have Down syndrome. Please let my baby be ok." When she was born and I could see that she did have Down syndrome I was devastated. You can read all about the guilt I had from her birth.

Since I chose to have my baby I was able to get to know her as a person and not her diagnosis. It's completely different once you can hold that little one in your arms and know this is a very real person; your child - more than a diagnosis. Sure they tell you all the scary medical statistics like "50% of babies with Down syndrome will have heart problems and require open heart surgery." Medical technology is more advanced today, and while open heart surgery is still a very scary and risky procedure, the success rate is much higher. Now individuals with Down syndrome have a longer life expectancy. You'll hear a laundry list of potential medical problems associated with Down syndrome. They are just potential though. Everyone with Down syndrome is different, some may have every single problem listed, others have none of the problems. It's not really fair to say your child could have this, this, and this when you just don't know.

One scare is leukemia. You hear that kids with Down syndrome are more likely to get leukemia than the general population; but what they don't tell you is people with Down syndrome are more likely to survive leukemia than the general population.

Then you'll be told all about the delays - in speech, gross motor, and fine motor. Ok, so there will probably be delays. Is that such a bad thing? They'll still learn to walk and talk and write, it might come slower, but they'll still learn. When they do reach those milestones it'll be that much sweeter. There are plenty of kids out there who don't have Down syndrome but have a speech delay, do those parents think, "If I'd have known there would be speech delays I would have terminated?" You can still have delays and not have Down syndrome, and you just get your child the help they need, not such a bad thing...same thing for those who do have Down syndrome; you just get them the help they need.

Anon said, "...but for some it is a lifetime knowing their child WILL NEVER be able to live on their own." Joe and I are like most parents - we have hopes and dreams for Kayla just like any parent does for their child. Do children usually end up fulfilling their parents' hopes and dreams? I think not; I think they make their own dreams and follow their own path - not always what the parent wants either. Yes Joe and I hope that Kayla will be able to live on her own as an adult. Will she be able to? I'd like to think so, even if it's semi-independently, but maybe she won't. I ask, "Is that really such a bad thing?" Is it? If our child has to live with us I don't view it as a bad thing. It might not seem like the ideal situation, but she is our child, we're a family, and if that's the way it has to be, so be it. What about all those adults (who don't have Down syndrome) that still live at home for one reason or another? Can't find a job, can't pick a college major, etc...they still live at home but does anyone say "Oh if I'd known my kid would still be living at home I would have terminated my pregnancy?"

This wasn't from anon, but I have heard other comments about "well I don't want my kid to grow up and be just a bagger at the grocery store." Again with the dreams for your child. Of course I would like to think Kayla would be capable of being more than a bagger too. But if she's not? Is that such a bad thing? How many baggers do you see in the grocery store that don't have Down syndrome? Then why is it the individuals with Down syndrome who are singled out as being "just a bagger?" There is obviously a need for baggers or the positions wouldn't be there. These positions are fulfiling a personal service to those who are buying groceries. It's an honest job making money, so what's the big deal?

I've also heard other comments about "I have to think about my other children." (when considering termination). What about the child growing inside you? Don't you have to think about them too? While Kayla was our first born I can't talk about any personal sibling experience, but I have read from other families that their other children are better people for have a sibling with Down syndrome (or any special needs) that it makes them more caring, understanding, and compassionate.

Another common one, "what would this do to my marriage?" I wish I saved the article I read a few weeks ago, but there was a study that showed the divorce rate among couples who had a child with Down syndrome was actually lower than the divorce rate for the national average.

Anon said, "What do you do if your child outlives you? There are definite questions you need to address when facing this choice." The underlying part of this question is "what if my child can't live on their own, who will take care of him/her if we die?" Yes this is a big concern for couples, maybe they don't have family members willing to take on this responsibility, or you don't want to put this responsibility on other children. All I know is I can't live in the future, I can't predict what will happen. I can't be scared of the future wondering "what will happen to my child if we die" and then terminate a pregnancy based on not knowing. I just have to have faith. Faith that if something happened to us Kayla will be taken care of.

Some parents will fret about their child not going to college because they have Down syndrome. Back to parents' hopes and dreams again - yes of course you want your child to go to college, but if they don't? Is that really such a bad thing? Here's a news flash for you - I never went to college. There. Do you think less of me now? While it's not common for people with Down syndrome to go to college, it's not impossible - there are more and more people with Down syndrome who are going to college; so it is a possibility.

Anon said, "My husband told me he would divorce me if I didn't have an a*ortion. 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....." Some people don't feel "equipped" to raise a child with special needs, they don't think they can handle a child with Down syndrome - but how do you know what you're capable of unless you've tried? How do you know what love for your child will get you through? (Again - adoption is a very real option, even if you can't handle it someone else is willing to give that child a happy home.) Everyone is entitled to their opinion, and this is mine: Your children could have the typical 46 chromosomes and there are no guarantees they are going to be highly intelligent. I find that so very sad to base the the value of your child's life on their level of intelligence. What about the child as a whole person? There is more to to each of us then just learning and intelligence . What about their personality? What about the joy they bring to your life?

When you receive a possible, or definite, prenatal diagnosis of Down syndrome, one of the things that comes to your mind is mental r*tardation and that is what scares a lot of people. You don't want a child who is mentally r*tarded, because there goes all your hope and dreams. But what does that mean exactly? It just means you learn slower, and there might be some things you'll never learn. Well you know what? There are a lot of things I'll never learn either - calculus being one of them! I don't think most of us grow up to be rocket scientists. There is a varying degree of intellectual development in people with Down syndrome - they are not all the same. Most people with Down syndrome have IQs in the mild to moderate range; that means most aren't severely mentally impaired. Of course there is no way to know where one person will fall on the IQ scale, especially while they are still in the womb, but that is also true of the typical population without Down syndrome. This might shock some people, but there are individuals with Down syndrome who score on the normal range of the IQ scale, maybe the lower end, but still the normal range.

Even after knowing all of the "potential bad things" that could happen, knowing there will be challenges, I would still choose to have my child.

I would rather choose life for my child, even if it means finding out in the end that she can't live on her own, and will only be capable of being a bagger, because at least I will have had the opportunity to know my child, to watch her grow and learn and play and be whoever she is going to be. I would rather have this real person to hold in my arms and laugh and cry with. I would rather have my child here to celebrate birthdays and holidays and first days of school and milestones. I would rather have the joy and privilege of raising her and molding her into a wonderful human being, despite what her IQ might be.

I would rather all that, than to not choose life, terminate my pregnancy - and never know all the possibilities and potential she has to show me; then to never know this child of mine...and when you terminate your pregnancy you're not giving your child a chance ... a chance at life ... a chance to show you who they are and who they can become ... a chance to make a real difference.

So while women do have the choice (and I'm not trying to make this post an a*ortion debate), I feel sorry for those 90% who terminate, because they'll just never know their child.

post signature


JennaG said...

Bravo, Michelle. Very well written--and I admire you so much.

Tracey said...

Excellent post, Michelle. I can only imagine that it was difficult to write, being so much in love with your daughter, and having someone try to hurt you because she was hurting.

I cannot imagine the guilt that must remain with a woman who purposely gets pregnant, only to choose to abort due to prenatal test results. And to have to choose her husband or unborn child?? That was so incredibly wrong, I can't even put it into words. Perhaps that was God's way of trying to have Anon leave her husband and raise her child? Who knows... Either way, I can tell she was hurting over her choice, and I pray for peace for all of the women who choose to terminate rather than give their child a chance. And I pray that more expecting mothers choose to consider LIFE first.

ChupieandJ'smama said...

I feel sorry for Anon. Clearly she is not admitting her true feelings, or she is just trying to justify something in her mind so that she can move on. My son doesn't have Down Syndrome, but what guarantee is there that he will go to college or that he won't be "just a bagger"? I can't rule his life. I can only show him a path and try to guide him down it, but ultimately it's his choice. People are so narrow minded sometimes and I think that they are so caught up in *themselves* and what they need that they can't see the big picture. Now my youngest has food allergies. Some things I've heard: Genetically inferior, Gods way of thinning the heard, Only the strongest survive and there is more but I won't even go there. These are people saying that my son should die because of his food allergies (these people were angry over peanut bans in school). Either these people aren't parents (and are under the age of 25) or don't have souls. When you are a parent your child is perfect no matter what imperfection they may have and you love them more than you love yourself.
Very good post!! In my mind there is no choice. Just look at your gorgeous, perfect little girl!

Heather said...

Hats off to you Michelle! This is an awesome post! I admire you so much for what you do for Kayla. When my husband and I got pregnant, we made a desicion not to have an amnio if it was suggested, for the same reasons. We wanted to get to know our son no matter what.

Kim Davis said...

Well said Michelle - GREAT response!

T*mmy said...

Very well said!!!

MIL said...

DIL, WOW what a very moving powerful post!! Your love for Kayla shows in every word you wrote. Anon was clearly trying to justify her decisions by belittling yours and BRAVO to you for standing up to your beliefs! I am so proud to be your mother-in-law!!

I love you very much and my precious granddaughter couldn't have two better parents to cherish her than you and Joe.

Much More Than A Mom said...

Aw, your MIL rocks.

Very well said, Michelle, and I agree 100%.

Kei said...

You are beautiful inside & out, and intelligent. I am so grateful to call you my friend.
Love, Kei

PEA said...

Michelle, this post has made me so very proud of you. Every point you made was excellent and better yet, came from your heart. I had a baby once...he only lived 2 hours...I would have done anything to have him live no matter what was wrong with him...but God had other plans. xoxo

Mrs. Mac said...

Beautiful post. Thanks for sharing. We opted for no prenatal testing too. A child of God is in His hands from the very beginning. Our view of 'normal' has taken on a new set of values ;)

Omaha Mama said...

I second the bravo!

I could write a thesis on this topic, so won't take up all of your comment space. I will say this, your daughter is beautiful and you are beautiful for knowing that. She's lucky to have you and Joe, I wish all kids with ds were so lucky.

The things you said about intelligence and being "just" a bagger and being normal. Well, I am so glad you did. I feel the same way. If parents did not have their kids because they might not live up to their expectations, well...would anyone have kids??? Really!

Thank you for writing this, it is beautiful. Your little girl will go far in life because you will allow her to be her own special person, regardless of what job, living situation, or life path that takes her down.

God bless you!

Sgt and Mrs Hub said...

Amazing post Michelle! Kayla will fulfill everything God has for her precious life, you and Joe are the perfect parents for her. A foundation of love to grow on. She is blessed. You are too, for knowing her.


Great Aunt Debbie said...

Excellent post, Michelle. Nothing is guaranteed in life. Seemingly "normal babies" may have something later on due to accidents, sickness etc. Kayla is a beautiful person who is growing and learning each and every day. I can't imagne not having her around! Love, Great Aunt Debbie

Cindy said...

Michelle, I think you answered anon's comments with the perfect balance of truth and grace.

Typically when someone leaves an anonymous comment, it I'd say it is cowardly, but I have a feeling this woman had more to deal with and needs quite a bit of healing herself.

I am so impressed that you did not seem to be on the defensive, but instead spoke as an advocate for children with Downs and for parents of kids with Downs.

Obviously some tragic accident could happen to one of my "normal" children and they could live with me even into adulthood, or my kids could all outlive us because of a tragedy. We simply can't let our lives be ruled by those "what ifs." In that same line of thought, we chose to never have the testing since it wouldn't have changed anything for us; we would be thankful for any children God created for our family.

I found it interesting that the divorce rate was actually lower for paernts of Downs children. Perhaps because they are typically so full of love and sweetness and beauty??

I'm proud of you and I'm praying for anonymous and her husband.

Go squeeze that perfect girl of yours who is created in God's image!

Corey~living and loving said...

What a wonderful, heartfelt post. You made such wonderful points. I feel sad for Anon also. Her pain is apparent. There is no normal. Life is what you make it.
I feel priveledged to have found your blog. thank you!

K.T. and her family of crafters. said...

Amen sista. I adressed anon in my own way after this post,because to be quite honest I was angry.I have another blog that I just let it all flow....very similarly to everything you just said.

I lose alot of respect for any female who choses a husband over their child-I feel sorry for Anon.

Shannon said...

That is truly and awesome post, Michelle! Bravo for writing it! I hope Anon does read it.

I almost felt like I know Anon. When I was pregnant with Gabi, after knowing she would have T21, one of my classmates in nursing school who was also pregnant, found out her unborn child would have T21. She aborted because her husband said the exact same thing to her. I am sure it probably is a common statement though. It was difficult to even speak to her knowing that her and her husband thought the child I was caring inside me was not worthy of life. But I am willing to bet that most husbands really wouldn't do what they threatened. My parents, mostly my father, encouraged me to abort and was really almost mad at me for choosing not to. If you were to see my parents especially my dad today interact with Gabi, you would have never believed some of the things he had said. He absolutely loves and adores her, and I am sure he would have never said those things knowing how he feels about her now!

Linda said...

That is the most inspiring, beautifully written post I've ever seen Michelle. I can't add a thing except to say how very much I admire you.
As I said to you once before, the Lord knit that sweet, sweet little girl together in your womb, and He didn't drop any stitches. He loves her and has a plan for her - and I think one of the best parts of His plan was giving her you and your husband as her parents.
You are a blessing.

Debra said...

Way to go. This is so well writen. Thanks for answering her so well.

Debra and Hope

amy flege said...

Yeah Michelle! What a wonderful piece you just wrote!! I feel so sorry for Anon as they have no idea, do they? Any of us blessed with a chld with DS are just that...BLESSED! I feel so lucky to be a parent with a child with an something extra. She has made our life so fullfilling.
I guess people like Anon dont deserve a special child with DS.

Dori (Aviva's mommy) said...

WOW Michelle...I do not have the words to say but I agree with everything you said....

HomeSchool Mommy said...

I opted not to have the blood work done...which leads up to the amnio (I can't remember the name of that blood test)...because I knew that I would choose my child no matter what.

I agree with everything you said here and I can only imagine how sad it makes you to hear people who choose not to have their children because of the possibility of Down's.

You did a great job writing it and I think you must be a great mom!

The bottom line is there are no guarantees....with anyone, just as you said. Even if you have the most brilliant child in the world, there's no guarantee that something won't happen to that child...some tragic accident...and them him/her less functioning than someone with Down's.

I think you said it best when you said we just have to have faith. I, personally, believe that God will provide. He will use all things for good. Look how many people Kayla has touched just with her pictures over the internet...those big, blue eyes and that sweet smile have touched so many! I'm glad you chose her!

Beck said...

It made me cry to even read that someone had commented that on one of your posts. What a beautiful, amazing response.

just making it up said...

Very compellingly said. I think that those who make comments about kids with Downs 'only' being baggers or never going to college are missing the point. The point is that you want your kid to be happy. When I was in high school, there was a class of kids with developmental delays integrating into the school. I remember so clearly when one girl with Downs got a job serving customers at a Bakery. She'd been placed through a co-op program, but she did so well, they hired her permanently. The school was delighted with their first big success, and it was a huge success too.

For most other kids at the school, that job was the sort of thing they took for a summer before moving on to 'bigger and better' things. They would not be happy in that job. But this girl was. She loved every minute of it - the independence, the money, the human interaction, the pride of being in a useful job. She didn't need college to make her happy.

People need to stop thinking of how much their kid might achieve and start thinking about what will make them happy adults. They might stop worrying so much (or, at least, about different things).


Tara Marie said...

Just wonderful Michelle......and thank you for speaking from your heart.

I actually feel sad for anon.....as it seems to me that she married the wrong person, because her comments lead me to believe she was trying to rationalize something that she didn't fully agree with [terminating her baby]

We are truly blessed to know our children and for me,,,,,she has made me a better human being by her just being her and me being allowed to travel along by her side for a while.

Love ya!

Karen said...

Wow, that must have taken a lot of thought, emotions, everything. Michelle, I have just felt drawn to you and Kayla from the get go. I believe your blog and your loving spirit have exposed many myths and fears surrounding Downs Syndrome. I think of the people you have hooked up with, the blessing and encouragement you have been to others who have Down Syndrome's children. I thought it was awesome all the folk you met on your vacation, it filled my heart with joy. Sounds like anonymous is in much pain and sadness. Someone may have a child who has no physical disability etc, but something may happen down track, they may have to deal with learning issues which would not have been picked up - there are so many variables in life. Do not let anything rob you of your joy. I think Kayla is a real ray of sunshine and I feel such hope for her! I also don't want to see you lose your peace during this pregnancy. My love to you.

Nisa said...

I am so proud you're my friend. And again I will say how much I admire you. This is a beautiful post. You have taught me so much. I love Kayla and I love you!

Christina said...

I can't belive someone actually posted that on your blog...
Anyways, you did a wonderful job answering. And I know it must have been bothering you till you got this post up, but you did great in answering.

Rikki said...

Well written, Michelle. I agree with everything you said. I must say, the husband of that anon commenter is someone I would divorce for being such an emotional blackmailer. As for "normal" being highly intelligent, LOL, obvioulsy this guy lives in a different environment than I do. I know plenty of "normal" people who are so very un-intelligent that I wonder how they cope in daily life.

Catch said...

It disgusts me that you have to defend yourself to anyone Michelle. I have seen you with your daughter, and she is the most lovable little girl imaginable. And you did the right thing....terminating a pregnancy b/c everything didnt go right is not the answer. Its never right to terminate a pregnancy for any reason. These people have much guilt to deal with. I could not handle it. But you and Joe are the greatest people...it hurts me to see someone ask these questions of you. It hurts me to see you have to defend yourself for loving your daughter and putting her first in your life. I thought we were all supposed to do that....if these people knew anything about you..they would know what a wonderful caring Mother you are, and what a precious loving little girl Kayla is. I am so sorry that anon has said these things to you....I apologize for her ignorance. You dont have to explain yourself to anyone, I am so mad I could cry.

Christine said...

Bautiful post Michelle.

It truly brought me to tears, it hits a little close to home for me. When I had the two girls after Josh was diagnosed with Juvenille Diabetes. I get asked,"Well, what if one or both of the girls become Diabetic." If they do, I at least know how to take care of them.

Kayla is beautiful and perfect,and I can't think of why ANYONE who would even think about ab*rting what God has blessed them with, a child.
Bravo Michelle!

Michelle said...

Michelle - a wonderful post! You said a lot that many of us think about every day. Kayla is beautiful and has an amazing mommy!

Michelle & Matthew from T21

Anonymous said...

You and Joe are my HEROES because you chose a path that was unknown , but still BEAUTIFUL and still filled with HOPE, LOVE, ADVENTURE, POSSIBILTIES!!!!!, AMAZEMENTS, FUN, LAUGHTER, JOY, TEARS, the list goes on and on....Kayla has such a gift of imagination!! (wish I had!!) and quite a sense of humor,(wish I had) is extremely smart (wish I had) and has a "great memory" (wish I had)truly amazes us all!!! and is full of life.. You and Joe are truly blessed with "little Kayla". Your opinion was "beautifully written" I can not think of the name of this movie , but the actress was Jamie Lee Curtis , and I always liked the line she said to her child in the movie, " I will love you forever and always, and always and forever" that is the love you have for Kalya and any other children you have. Love Mom

Tracey and Conor from T21 said...

Michelle, I applaude your eloquence in answering this uneducated individual. I also chose not to have the quad test as DH and I would not have done anything different, and I am so happy I didn't. Initially we were devastated but now we realise we have been truely blessed with our Wee Man. Our 4 year old is his biggest motivator and fan. I pity the anonymous poster because she will have to live with her choice forever.. and always wonder what her ignorance prevented her from experiencing. I hope I get to meet you guys one day IRL... Kayla is such an angel 0:)

A Special Family said...

Michelle, I am bawling my eyes out!
I am an academic, always have been - straight A's, degrees, masters moving onto phD. Do you know what? I couldn't care less if my child was a gardener, or a dr, or a painter, or a chef or a cleaner. Do you know what I care about? If my child is HAPPY! There are so so so many depressed professionals that barely live because of their mental health. We can't test for that though can we? I have a cousin with down syndrome and a friends brother. I believe they contribute more to society than most people.
I have never shared this with you, but at my Church there was a high power couple - both in the computer industry, big house 3500 square feet, private school etc. The tests showed all normal range, so didn't have am amnio as she was 32 and none of the other tests were raised. Their third child was born with down sydrome, a beautiful little girl. I didn't know this, I kept asking when they were going to bring the baby. One day she looked at me and said, you don't understand she has down syndrome. I said, but does that mean she can't come to Church? I was truly baffled. The woman said to me, I can't bare to bring her anywhere. To cut a long story short. They kept her for 5 months. The woman refused to nurse her, or hold her, her mom had to move in. Instead of going for Christian counselling or even regular counselling or joining the local chapter for families, she went to a lawyer and wanted their rights terminated. This was a CHRISTIAN woman. They successfully handed her over to the state when she was 5 months old. A few months later she was adopted. She told me that she doesn't think God meant for her to have this child (oh really, didn't you give birth to her??) she thinks He meant for her to be an aunt to her. Within a month of handing this beautiful baby over, she was pregnant and gave birth to another daughter. She had her Christened and made this speach about this is the child God wanted her to have a normal child. Several of us sat there in tears, we couldn't believe it. About 6 months later, they were in a real pickle and called me and asked me to watch the kids. I did it. Do you know what I heard the 9 year old say when he was saying his prayers?
the words haunt me to this day, and I am crying even remembering it

' Dear God. Please let my little sister X know that I love her and I didn't want to give her away. Please God let her live with us. I am worried about her. Please God if I get sick, don't let my mommy and daddy give me away, I don't want a new mom and dad if I get sick'
that is what he said, word for word. I feel sick even remembering it.

Roll on 5 years later. A good friend of mine is still friends with them. Do you know what? This little boy who was pushed to be top of the class in everything (they were the ultimate flash card parents, constant homework, learning, tutoring, perfection on the pitch, yelling at baseball and soccer games) is having big emotional health problems. The constant need for perfection is too much for him, or anyone for that matter.

There is no test that allows to you eliminate a child because they will have a mental health problem or meningitis (I know two children who are deaf and have movement in only one arm due to meningitis as toddlers/children) or a car accident or cancer. Would you want to eliminate or place for adoption a child who went through that??

There have been some great things I found when I moved to England
1. The most popular soap did a story line on down syndrome with a baby being born to a couple
2. My new Church has a family with a beautiful baby boy with down syndrome who is the light of the Church
3. They have stopped using the word disabled children to refer to children with down syndrome, they refer to them as special needs and use inclusion instead of exclusion!

My life is sooo much richer because of your blog. Oh yes, one more piece of info, my parents were told I had down syndrome, well I don't but I don't doubt I wouldn't of been loved to the moon and back if I did. That sure is the lesson I will teach my child! And, I have decided to adopt through the special needs route for that very reason. ALL kids deserve to be special!


RK said...

This is one of the best, if not THE best, summations that I have read. I wish I could print it and put it in the hands of everyone getting a prenatal diagnosis... you should definitely look into publishing it! I know of two women right now who are in this position in their pregnancies, and I hope it's ok to point them to your post. I really believe this could truly change a mind, Michelle. You were given all the right words in the right way! Thank you for taking the time to put it down for us to see.

Mama Mia said...

Excellently said, Michelle! I couldn't agree with you more.

There are many ignorant people out there. Hopefully, our families can enlighten them about the truth!

Laane said...

Great post!

What did Anon need? Reassurance that she did well not to stand up against her husband who had unreal expectations of children? Why didn't she take into account your feelings? Why did she need to react that way?

I have children that appeared normal during pregnancy, but now they are handicapped. Should I have put them in the bin the minute I discovered it?

About IQ.

I have two who have very very high IQ. One can't focus long enough to get things done. So he'll never ne that famous professor he will be when they find a cure in time. LOL! The other has his first job at a huge grocery store...filling the shelves. He's is very happy with it. People accept him the way he is. He doesn't feel the pressure of "you can do more" he feels at school. He's very dyslectic and has got ADHD. I'm OK with whatever job he'll get when he's grown up, as long he's happy and the job is decent.

With the last pregnancy I was forced to have prenatal tests, due to a blood disease.
I was above 40.
But we made it clear we only wanted to do the tests we needed to prevent problems at birth. No test of downsyndrome or anything else.

I've been in the position of sitting with my dead baby.. seeing the face that never would smile.
If I was able to accept that, I would be able to accept anything else.

I'm sorry that some people don't feel that they have enough love to give.
There's always enough. It's just what we want to do with it.


~Melissa~ said...

What a very well worded post Michelle. I admire you for being able to put your thoughts into words so well.

Once Upon a Dream... said...

Awesome post, Michelle. Kayla is blessed with parents that love her and who know her. God has blessed the three of you and will continue to do so.

I cannot imagine aborting a baby, no matter what may come. Any child is a gift from God, that is to be treasured no matter how many chromosones they have.


Anonymous said...

What a great post! I agree with everything you had to say!Kayla is a beautiful and loving little girl. I am really proud of you for speaking out.I think people need to read your blog and they would choose life for their child.I am proud of you for always speaking out!
love ya,

Lainey-Paney said...

Wow. This was very well written.

When I was pregnant with Gage, I didn't even want the AFP test. My husband & I struggled with that. He wanted the test, and I did not. I was already so pregnant, and so very in love with the baby, that it did not matter to me what the results were---I was not going to terminate the pregnancy no matter what. And he said something to me that just brought tears to my eyes because then I knew that he would not want to terminate either; he said that if we found out that the baby was going to be disabled in any way, it would give us more time to better prepare for a special needs child.

In the end, Gage was fine...healthy, no Down Syndrome.

But I know in my heart that even if he did have Down Syndrome, he would still be here & would love him just the same.

Sure, it would be different...but in many ways the same. Still a child. Still curious about the world & putting all of the pieces together from what he would see, hear, feel, & smell... Still a wonderful precious life that I would be so in love with.

And of course you have hopes & dreams for your child.
Working in the social services arena, I've seen quite a few people with Down Syndrome who DO LIVE ON THEIR OWN, and do function in society.

Your post was very well articulated, and I think your feelings were very well conveyed.

chelle said...

Very Powerful post. I really enjoyed reading through it.

BarbaraME said...

What a lovely post, Michelle - your MIL told me about it. Both my boys are deaf. When I was pregnant with them, did I plan for two deaf kids? No - of course not. As time has gone on, it's just part of who they both are. And in many ways, having them have each other makes it easier. I wouldn't trade either of them for anything!


mum2brady said...

Amazing post Michelle! I feel very blessed to have Brady in my life, and wouldn't trade the experience and adventure for anything! I don't think I would have been so nice responding to Anon's comment - you did a wonderful job :)

We love Kayla - she is just beautiful :) I'm grateful that I've gotten the chance to "know" you both in our adventures in T21 :)

LauraJ said...

Beautiful mama. Beautiful Kayla. Beautiful family. Beautiful post.
Thank you.

Mrs. Mac said...

My (police officer) hubby likes to tell people he's never arrested a person with Down syndrome ;)

Barb said...

It took a while but I found her comment. The part that really struck me was her husband's threat to divorce her. I can't imagine that.

Your answer to the comment is very clearly the way I think most of us would feel, Michelle. Imagine never knowing your child. Imagine never giving that child a chance to have a life.

Anonymous said...

I teach about domestic abuse and let me say a man who divorces his wife (or even threatens to) because they won't have an abortion is living in abuse, it may not be physical, but that is emotional abuse in it's worst form.

Robin said...

Bravo!!! Your words were very eloquent and perfectly stated. Bless you and your family - you are a great mom!

Sarah said...

Oh Michelle, whether you know it or not, I really believe God is speaking through you in this post. It is my prayer that just the right people read this and perhaps, as a result, choose life. Isn't it amazing that a person, a human being, a creation of the Most High, is disposable without consequence simply because they are in the womb! Yet as soon as they are born, we call it murder. I never will be able to wrap my mind around that concept.
Pslam 139:13-18 says,
"You made all the delicate, inner parts of my body
and knit me together in my mother’s womb.
14 Thank you for making me so wonderfully complex!
Your workmanship is marvelous—how well I know it.
15 You watched me as I was being formed in utter seclusion,
as I was woven together in the dark of the womb.
16 You saw me before I was born.
Every day of my life was recorded in your book.
Every moment was laid out
before a single day had passed.

17 How precious are your thoughts about me,[b] O God.
They cannot be numbered!
18 I can’t even count them;
they outnumber the grains of sand!"

Michelle said...

I admire you and Joe so much. I have worked with alot of special needs kids and I think if you take the time to get to know a child with Down's you will see that they all have such amazing hearts.

Take care Michelle

Renee's Ramblings said...


What a beautiful and wonderful post. I admit it...I cried through the whole thing. Thank you for sharing.

Mayhem And Miracles said...

I left my longest comment ever on your blog last night, but when I hit publish, it erased! Ugh! (BTW, I it was my computer; not your blog.) Anyway, it basically said "AMEN sister" with a bunch of personal examples from my own family. And that having been lucky enough to meet Kayla personally, I KNOW she has an important calling to this world to bring JOY through her character!

Anonymous said...

Wow Michelle. I love, love, love it! I know you were speaking for Kayla, but you said what all of us as parents of children with Down syndrome want to say. You said it so eloquently! I give you a standing ovation! :-) I thank you and so does Madison!


Amy said...

Amen sister! Michelle, I feel that God's plan is perfect. He chose you and Joe to be Kayla's parents because He knew what would be best for her. And I know I say this a lot, but Kayla brings such joy to me everyday when I see her pictures. And I honestly don't feel it's because she has an extra chromosone, it's because she's extra special because she's Kayla!

I so totally agree with everything you said Michelle. What would be so horrible if she lived with you, earned an honest living, took a little longer to learn a few life skills, etc? Nothing!

Kayla is a true gift and a blessing to you and Joe and to us bloggers that get to peek in your lives a little each day! Thank you!

Anonymous said...

I appreciate your heartfelt response to anon! I have two children, and I never had those tests done because I wanted my babies no matter who they were going to be. They are still too young to know what they will be, but I can't wait to see! I hope that anyone who is in the position to make that choice will have someone like you to talk to. So that if they have doubts they can see that you have been blessed with your beautiful little girl, and that is all that matters. The other stuff will work it's way out. What blows my mind is that this person would be worried about who is going to want you kid if you die. I mean if you heard of a little girl who lost her parents wouldn't you want to love her? I know I would. Where is Anon's compassion? Thank you Michelle.

Princess Morgan said...

Kudos Michelle! Beautifully written. I feel the same way. I really wish more parents had the opportunity to experience the blessings our unique children bring us. The truly are angels! We are a 'chosen' few. Big hugs to you & Kayla. Hope you are feeling well.

Julie said...

What beautiful words, Michelle. You are amazing! Kayla is blessed to have such a wise Mommy.

O Mama Mia said...

Wow! You handled this perfectly & gracefully. And it speaks volumes of your strength & passionate love for Kayla.
{{standing ovation}}

Mary said...

Great post, Michelle! Well done. I was unaware that 90% terminate! That stat blew me away. How sad. I look at Kayla and see she is made just as God intended...beautiful.

Sue said...

Oh my Michelle. You brought me to tears. That was a wonderful and honest response. I agree - regardless of DS, there are no guarantees to a healthy child, "intelligent" child. We all want that perfectly healthy baby with hig intelligence. But the bottom line is - as a parent, you will love and be proud of your child's accomplishments no matter what they are. What I want is to raise hardworking, independent children. And by independent, I mean as independent as they are capable of. Like you said, if Kayla has to live with you forever, so be it.

As parents, our goal should be to help our children learn and meet THEIR potential.

You're an amazing Mom and both your children are so luck to have you and Joe.

p.s. Your MIL sounds very sweet!

The Barkers said...

I have goose bumps and tears in my eyes. Thank you for being an example of a SELFLESS person. I believe it all comes down to ones selfishness when terminating a pregnancy.
You spoke so well and intellingently. Even without having that college education!:-) Haha
I'm so glad I have come to know you in this blogging world. I will be sharing your blog with someone who had a child this last year with Downs.

Leslie said...

Holy cow. I was not expecting this!

You summed this up very, very well.

I taught elementary school for about 8 years. I had close to 20 or so kids in special ed. during that time...some in 4th grade with the learning ability of a preschooler.

Not one single child had Down syndrome. One child wasn't even diagnosed with a learning disability until they were in kindergarten.

So what do these parents do when they realize their "normal" child isn't so normal after all?

I could go on and on and on...but you said it all so well.

I pity Anon. I pity her husband. I pity their other children who have a lifetime of trying to meet their expectations.

The first words out of Todd's mouth when I told him, "It's very possible Jack has Down syndrome..." were, "Then I'll coach Special Olympics." I always thought I was lucky...reading Anon's comment just confirmed it.

Thank you for posting this. Do you care if I send a link to it?

ABW said...

Great response to her. You are an amazing mom and family!

jennifergg said...

This is fantastic. I'm sending some link-love your way; everyone should read this!

Conny said...

OMG - I LOVE LOVE LOVE your post! I wished there were many more people like you out there. And I feel sorry for Anon, too.
Keep up your excellent advocacy work! You rock! The world needs you!

Mom to Rhett said...

Beautiful. It was so full of love for your daughter. It's great to know that there is someone else out there who does not see the need to "fix" something that is not broken.

Hugs to you. You are an inspiration!!

Susie Q said...

Oh dear Michelle. You are such an amazing woman...Kayla is a beautiful and wonderful child. I feel such sadness for *anon* I can not imagine even *wanting* to have a child with a man who would "divorce me if I had a DS child". How awful.
My nephew was recently diagnosed with Austism. He is a beautiful, loving and precious child. Our family thanks God for him. We can not imagine life without this child.

When one has/adopts a child, no guarantees are given that the child
will have a *normal* life. What IS normal anyway? We all see that differently.

Children and young adults are injured, become ill...life happens.
There are no promises...each child is special and deserves to be as loved and wanted as Kayla.

I will pray for Anon as she certainly needs peace of heart and mind. I will also praise God for your family and for mine. For our husbands who love their children no matter what...who love us enough to partner WITH us in this magical
endeavor called parenthood.

Warm hugs,

Michelle said...

Very, very well said, Michelle!

camille said...

Wow, what an amazing post. I have a child with Williams Syndrome and reading your words was truly inspirational. I definitely have my bad days, but after reading that I feel so uplifted. Thank you for sharing such powerful words.

Diana said...

I try to read your blog as often as possible (thanks to LeslieAnn). I must say this was soooo touching!!

It sounds to me like this woman has A LOT of guilt for terminating her own baby and directed it to you!! Several things come to mind when I read htis. It doesn't sound like her marriage was that strong to begin with. If he was going to leave her because of a baby that tells me alot about what kind of a man he is and how little love he has for his wife. Abortion is NOT the answer. It is a child of God and we have no right to decide their future. I got pregnant at 16. Everyone told me to have an abortion because this "mistake" was going to ruin my life. Well 15 years later I look at my "mistake" and rejoice that I didn't listen to those people!! I graduated high school, went on to college, became a teacher, and married a wonderful man who adopted this "mistake". I cannot imagine living without her. She is the most precios thing..a child of God. God used this "situation" and I am better for it. I have been able to witness and use my life's story to help other young mother's facing this very difficult time in their life.
Kudos to you Michelle for being calm yet adressing her statement. I think we really need to pray for this woman. Seems like she needs it!

Shelley said...

A brilliant post Michelle - I am glad that anon visited your blog and I hope she continues to do so.

It is totally unhelpful to condemn someone who is just putting forward their story - not some 'shockjock' but a genuine person engaged in a dialogue. We are all different and just the fact that she visited shows that - I hope that life gives her opportunities to see just what she is capable of - not necessarily in the DS enviro - but any of the many possible parenting challenges.

Divorce/abortion were not in any way an issue for us but P would have liked an amnio ('to know') once we found out about Twin 1's heart defect. I refused. He didn't push it. Not long after Hannah was born I remember him saying something like: "I was silly to be so worried, I should have known better. It is just different that is all. I should have known that that is nothing to be afraid of." Needless to say his love for her could be seen so clearly on his face in the nanosecond they pulled her from my tummy and he laid eyes on her! Enough said. Thanks for being such a lovely, compassionate and passionate advocate.

Me said...

Wow, wow and wow. That was a wonderful post. That was really moving!! :) And like alot of people have said, your response to anon was just so well written.


Ladyblog said...

Great Post! This reminds me a bit of our adoption. Our daughter has a blood disorder and we prayed that it wasn't severe. Then, we found out that it is severe. Now, we just feel so blessed to have her as our daughter and we are adopting another daughter with the same severity blood disorder. Children can really open our eyes! Blessings!

patti said...

WOW! I was blessed to read your post from my friend Leslie...what a platform you have and you do an excellent job of advocating a great life for your precious little girl as well as many others with an extra chromosome.

I also admire your honesty and bravery to speak from your heart. I've been blessed to read your blog today...I'll be back to read more.

Alice said...

I really agree with you - we are lucky that we've made the decisions we did and have such beautiful children. It would be such a shame to miss out on life for a dream of 'perfection'. Thank you for this post. I do hope that your anonymous commenter has read it too. Alice : )

theragan3 said...

I have stumbled on your blog and boy am I glad. Your post about your sweet girl was comfort to my spirit.
In May of 2005 I was told I was pregnant with twins and that one of them most likely had Downs Syndrome. It was like the bottom dropped out of my world... for a moment. The dr. doing the sonogram mentioned something about termination and I vehemently said no. It took my hubby and I a few minutes to take it all in but our immediate response, together, was OK. That is what we have bee given, it will be ok. We firmly believe that there was no mistake because God doesn't make mistakes. Our boy was normal in His eyes and in ours. We did have the amnio - but not for reasons most have it. We just wanted to know so we could begin to prepare for his needs. He also had the AV defect that is common to Downs kids. We read books, talked to parents of Downs children and knew the road ahead and welcomed it with open arms.

Our sweet Moses lived one month - and after having open heart surgery - went home to be with his Creator, the One who had made him exactly perfectly. Our fave Bible verses for him came from Psalm 139 that talks about being knit together in our mothers womb - that we are created in HIS image, with love. We chose his name, Moses, because of a meaning we found - created for special purposes. That was exactly what he was.

I wanted to thank you for the way you responded to this one who obviously doesn't understand that God's ways are higher than ours and that He doesn't make mistakes. He doesn't give us more than we can handle - without His strength. I feel sorry for this one who had ot make that decision to not be blessed by the "perfect" child that God was giving her.
May He comfort her spirit.

By the way, your daughter is gorgeous and makes me wonder what my son would be like!
*if you want to check out Moses' website, the link is on my blog

Overwhelmed! said...

Oh Michelle, you are such an amazing mother! Your love for Kayla just shines through in this post. Bravo for your courageous and passionate words. I couldn't agree with you more!

Alycia said...

Dear Michelle, What a beautiful post and I am so thankful I had some time this evening to come visit your blog and catch up on your posts. God is truly using you to reach the hearts of many people and I pray that others choose life because of what you shared here. Kayla is absolutely precious and a testimony to God's character in so many ways! Blessings

Anonymous said...

What a beautiful soul you have exposed to us all. Thank you!
Braska's Grammy Jan

Kim said...

Michelle, I've visited your blog many times but feel compelled to leave a comment letting you know that this post really touched my heart. Your daughter is so beautiful and she IS a gift from God. The next time someone foolishly tells you otherwise, ask them to read Psalm 139:1-18. Each of us has been created as a unique person. God doesn't make mistakes and to think otherwise diminishes the value of His creation. I agree with many others who have commented that "anon" must have some deep-seated guilt. I will pray for her and her husband because they need God in their lives. Thank you for your openness and for raising the awareness of Ds. I've read and heard so many stories about Ds children and the blessings they are. I could go on and on but I want you to know that I enjoy your blog and love seeing pictures of your beautiful "Big Bleuberry Eyed Angel". Hugs and Blessings ~ Kim

California mom said...

Wow Michelle!!! You are an amazing person. This post says everything so well. I just don't understand some people's ignorance about special needs kids. I worked with many people with ds and they are truly amazing individuals. It hurts to know that someone would leave hurtful comments on a blog to make themselves feel better about making a selfish choice. You and your husband have been blessed and I'm sure Kayla will grow up to be whatever she is meant to be.

Wesley Jeanne said...

Michelle, This is an excellent post and you make very very wonderful points.
We never know what we are "equipped" to do and we never know what will happen. What if that person's so-called "normal" child had a terrible accident and suffered brain damage or became physically disabled? Would they disown the child? Would they abandon the child? Why is that nay different? We never know what hand we will be dealt in life, we can only do our best to offer up our love.
Keep up the good work.

melody is slurping life said...

I just smiled at your beautiful daughter's face all the way down the page as I read this post. I'm a mom who chose to adopt and parent 3 children with special needs after having one biological child. And I would not have missed it for the world. They are my world.

90%...they have missed so much in not knowing their children.

Kerry said...

What a beautiful post. I am a mother to a two-year old son who has Williams Syndrome and I couldn't agree more with your words. I didn't know I was having a child with a genetic syndrome while I was pregnant, but I can't imagine my life without him, our family would not be complete. I hope you don't mind that I am referencing this entry from my blog, as I think my WS mommies online would love to read it. Thanks ~

Amy said...

Ditto. Is it really such a bad thing to live in the moment. Accept life on life's terms, and discover that the love for a child and happiness does not depend on your kiddo having all her genes and chormosones.
I am the mother of a Williams syndrome child and am so very happy and content, daresay even feel blessed on some days?

Nancy said...

Personally, I just can't judge a woman for the choice she makes when she discovers there is something wrong with her baby because I never had that choice to make (I didn't know my baby had a syndrome until after he was born). She will have to live with her decision forever, and I imagine there is a high price to pay emotionally when one terminates a pregnancy in any situation.

HOWEVER, I'm very glad I didn't know about our son. I always told my friends and family that if there was something wrong with our son, I wouldn't be able to deal with it, but I have. Like you said, you don't know unless you try. I have learned I don't have much choice except to be strong and fight for him so he has an opportunity to live a happy life. I am a better person because of my baby and stronger than I ever knew I could be. He brings out the very best in me. No matter what he does in his life-bagging groceries included-I will be an incredibly proud mother.

Your daughter is GORGEOUS. Thank you for this post. I think it will help many moms out there.

Katie said...

Hello Michelle,
That was a beautifully written post and your daughter is gorgeous!!
My middle son is suspected Williams Syndrome and i must say that since having children my views have changed a great deal. I had a few tests done when pregnant with my first son (for downs) as my mother sadly miscarried a downs syndrome baby at 18 weeks. At the time i always thought i would choose to abort if their were any problems. After my son was born perfectly healthy i realised that nothing could ever make me feel that way. When my second son was born this feeling was even stronger and as he grew and started displaying developmental delays i knew that the only thing that mattered was his happiness.
Yes, there are hard days and its not all roses but the amount of joy children give you, special needs or not, makes every hard moment so very worthwhile.
Take care
xxoo Katie

Whitney said...

Great Post. I just found out August 2nd that my child has Williams syndrome. Over the past month I have felt many things. A whirl wind of emotion. One of those thoughts was would I have aborted if I had known? Their is no prenatal test for WS. My baby had to have open heart surgery at 4 days old and also had a cath done last Friday when he was 8 wks old. After watching him go through this as tough as it is for him, me, and my husband I know I wouldn't have aborted. I don't believe my baby deserves to go through pain any more than any other parent but he does deserve the right to live.

kyouell said...

I'm here from Super Duper Jack (which I found by way of Pinwheels). I have only read the two "Hope and Normalcy" posts so far, but wanted to stop reading to let you know how much I enjoyed -- and agreed with -- your points.

My son (The Biscuit) was diagnosed with Ds at 3 days old. We love him immensely, and as I've told many people, I only ever wished for my baby to be the happiest he could be. This diagnosis doesn't change that. I still want him to be the happiest Biscuit he can be!

I think that if I had received the ultimatum that your anonymous poster did I would have chosen my child. I wouldn't want to stay with someone who didn't love their own children unconditionally.

I'm so glad that I was of "advanced maternal age" with both of my pregnancies because it made it easier to tell the medical people that I didn't want amnio due to the increased risk of miscarriage at my age. Well, I guess it didn't make it easier to tell them, it really made it easier for them to accept that I had a left-brained, logical reason for refusing the testing. I'm so glad that I wasn't pressured into knowing.

Although... I saw it in his face in his sonogram. I saw it even though no one else did. Interesting, eh?

Enjoying the blog!

Anonymous said...

i read this post and cried. i had an abortion at 20 because i couldn't tell my parents about it and didn't know what else to do. my boyfriend was a student at harvard and i too have a decent intellectual capacity. most likely our child would have been healthy and smart and beautiful. here i am now at 42 and childless. i still mourn for that child i never had. but being single and childless at this age and knowing the risks of having a child now made me shy away from trying even though i always wanted to be a mother.

i have to say, though, michelle, after reading your blog and with some growth and maturity, i have a different outlook. i always knew if i got pregnant again i would carry the child to term, regardless. that hasn't happened. but now i realize that trying to have a child now is an acceptable risk. sure, the chances are there that i will have a child with some challenges, but you helped me realize that that is ok.

thank you for an extremely well written post.

Sully said...

Beautiful post!! I have two biological sons and both have incredibly high IQs and the problems one of them have because of it is just crazy. From not talking until he was much older, late crawling, walking and his social skills were terrible.

I can't imagine deciding the fate of a life based on IQ or possible difficulties a as a parent that I might face.

Trust me my youngest has really put me through the loops and I wouldn't trade him for the world. I have learned so much from him.

jenhiatt said...

Amazing post Michelle!

Anonymous said...

After reading your post,and having followed Kayla's progress on face book, I can't help but feel lots of compassion for you and your family.
I really believe, that you have made fantastic discisions during your pregancy, and that you will enjoy your daughter thru many years of life.Those who have aborted the most precious,loving,children, will never know the joy,and satisfaction of bringing up a family. Kayla is a beautiful and loving child, keep the faith, and you will be happier. Don't be offended by what others think or do, you and only you decide your future happiness. Also be leary of comments made by doctors. They don't have all the answers, and probably never will.
God Bless yoou and your family, and give the kids a kiss for me.

Anonymous said...

Thank you so much for your post. I hung on every word. You have put in to writing the emotions that I have felt.

Love my amazing little boy who is 4! Every day I see God's plan unfolding in his life as his joy infects everyone that we meet.

Thank you God for sending me an ANGEL.

ahoy.jenni said...

Wow....it sounds like the anon commentator has great guilt. I could feel the pain in her comments. You have replied very well, I couldn't have said it better. And your daughter looks just gorgeous and a barrel of fun. Lucky you and lucky her! Best wishes...Jenni

Anonymous said...

I was given a prenatal diagnosis of T21 and we chose to terminate the pregnancy. It was the hardest decision I have EVER had to make. We made the decision for many reasons. I regret that decision more than anything in my life. I did not give my child a chance. I cannot reverse the decision. I have been off work for months as a result of the guilt and grief I feel about the decision we made. It hurts me on a daily basis and will most likely haunt me my entire life. Unfortunately, the time you are given to make an informed decision (for obvious reasons) is very short but the time you have to regret or grieve is a lifetime. Don't be too hard on Anon for saying what she said. She possibly has been through this and now feels like I do. I was not well advised. I was scared. I missed out. My heart is broken and part of me died too. I beg my unborn baby for forgiveness daily. I am not proud of what I have done but it is done. And I am broken.