Tuesday, August 15, 2017

I Am Tired Of The Down Syndrome Termination Discussion

I am tired of the Down syndrome termination discussion. Not because I don't want to fight for Down syndrome, but because I honestly don't understand why this is still a prevalent issue in 2017. And yet...this discussion is all over my social media news feeds. This week. August 2017.

Why is Iceland eradicating all of Down syndrome? Why is Denmark and several other countries not far behind? Why are people at large devaluing Down syndrome, and most of all-- WHY is Down syndrome disappearing?

This makes no sense to me.
It feels as though a doctor is handing the world a diagnosis, saying, "You are about to have a really gorgeous rainbow full of color enter into your lives. Bursts of bright yellows, creamy purples, silky blues, vibrant reds-- your live is about to be overrun with beauty beyond your wildest dreams in an amazingly unique way."

And the world is saying, "Eh, no thanks. A rainbow sounds kind of bulky and would take up too much space in our sky. And plus we've never had a rainbow before, so we wouldn't know what to expect. Pass."

Perhaps it's my own fault. I'm so busy admiring my own rainbow that I forget that there are other perspectives. Other ideas of what my life should be like without having ever experienced it.

But pushing the "me" out of this picture entirely. Addison. Addison is so busy living an awesome, fabulous, chocolate-drenched life, that she would never consider their perspective valid. And she has Down syndrome.
I'm not knocking the prenatal testing. Goodness knows I took it myself so that I could be prepared to take the best care of my daughter I possibly could. And I was thankful to go into birth with as much knowledge as possible, and in the right hospital to be able to handle what was coming.

But why are we letting these tests decide whether a baby lives or dies?

Do you know how many ways a child's life can be threatened or altered every single day after birth? And yet as parents, our job is to love and fight alongside that child no matter what kind of hailstorm falls on us. No matter what. So why is it a "thing" to decide...before even meeting the child...that these tests coming back differently than you expected determines whether you hit a kill switch or not?

What is happening? Why is it a source of pride for countries to share these statistics? These philosophies?

WHY is the world saying that it would be a better place if individuals like MY DAUGHTER had never been born?

Speak for yourself. My world has been immensely better with Down syndrome in it. All the good in the world has come with her diagnosis. Honestly, I'm amazed at the new perspectives, beauty, and gratitude for life itself because I've been gifted my daughter.

Rainbows do that.
My three other children are already learning and growing in ways they wouldn't without a sister with Down syndrome in their lives.

The opportunities for grace, both given and received....love...acceptance from those around us, the community, and our church-- all of these things have been mind-blowing to be a part of.

Addison has made our world a better place. Not in spite of Down syndrome. Because of Down syndrome.

So why again are countries bragging about plucking their rainbows out of the sky? Do they not want the world to be a better place? A more beautiful, prism-filled place of acceptance?

You know who would never judge someone else based on any sort of physical, mental, or emotional difference?

Someone with Down syndrome.
If you ever wanted to be accepted completely for exactly who YOU are, I suggesting finding a friend with Down syndrome and realize that acceptance goes both ways.

Okay, I'm getting off my soap box now.

Just kidding. I live up here.

With my beautiful daughter, Addison, who has challenged everything I thought I knew and replaced that with a new kind of love and acceptance I didn't even know was possible eight years ago.

I am grateful for her. I am grateful for Down syndrome.

Which leaves me once again scratching my head with...WHY is this still an issue? Why? I don't get it.

Dear God please protect our babies with Down syndrome and help the world to see them for the gift they truly are.



31 comments:

  1. When I read of Iceland, I immediately thought of you and you precious Addison.

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  2. I'm not on social media much, so I don't know what the controversy is right now. I only know that if testing during my pregnancy had revealed DS and I had to make the choice as to whether or not to continue the pregnancy, I guess I'd have a child with DS right now. My husband and I talked about it at the time in a vague sort of way (you have the luxury of doing that when your tests come back normal), and even though neither of us really came out and said it, I think we stood in solidarity that we would have our child and love our child, no matter how she arrived to us.

    God bless your rainbow. ♥

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    1. Thank you for this perspective! I love this-- "we would have our child and love our child, no matter how she arrived to us." This just really sums up parenting for me.

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  3. AMEN SISTER!!! Great post and its crazy how grown up she looks in these pics. She was an adorable baby and is growing in an even more beautiful little girl.

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    1. Thank you! I am amazed how grown up she's becoming too! Love this girl!

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  4. Yes! My favorite comment is, "I don't know if I could do it." And I remember being there before and thinking the same thing. I feel like a fraud now when people say it to me because I'm not an amazing mom doing superhuman things. She's just an amazing daughter being a radiant human being. She brings so much joy and happiness. If you don't think you can live with intense joy and freely given love and vast amounts of pure sass, then I don't know if you could do it either. :)

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    1. I agree with this 100%! I thought for sure I couldn't do it, and yet somehow....not because I'm amazing or superhuman...but because SHE is amazing. I love the way you worded this!

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  5. I love this post so much. I have learned so much about Down's Syndrome from just reading your posts the last few years and I have been truly blessed that you have allowed your Rainbow Addison into my life and sharing her antics as well as the antics of your other kids here and on instagram. I think that part of the reason the world would like to get rid of this is not because of what is wrong with the children with Down's it is what is wrong with the people who want to get rid of them. They don't fit into any mold and that scares people. I can totally remembering teaching my K- 2 students music and how some of the teachers just didn't have the patience to deal with the unknown episodes. But that is part of life and I think it is the fear of the unknown that scares us all, but to get rid of these bright rainbows of sunshine is just beyond me. When I had students who had special needs they were always the most loving and taught me so many things about life. Once again thank you for sharing your rainbow with us all.

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    1. Thank you for following and for telling me that my often-times botched efforts at sharing life with Addison have made a difference. I really, really LOVE that it has because life with her is so amazing and it's often difficult to articulate all of the many different facets. Yes, there are unknown, scary things to work through at times, but we are all stronger for working and loving through them. Thank you for loving my girl from afar! And for letting her change the way you see Down syndrome. Seriously so grateful for this.

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  6. Such a good post and so true.

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  7. Thank you!! ❤️💙💛😄 We all have to keep spreading the word... we are all unique and we are all so much more alike than different. How rich the world is because of each uniqueness!

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    1. YES! Each uniqueness DOES make the world rich. Well said. I love that description.

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  8. I have never commented on any of your posts before although I look forward every day to your rainbow snapshots on Instagram. They provide perspective and joy. Why these issues still have any sway in a culture dominated by demands of acceptance is a difficult concept to grasp. Addison and individuals like her have provided such a depth to my life that I cannot even begin to explain.

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    1. Thank you so much, Melissa. I join you in your perplexity over this issue. Not sure what is going on with the world! Thank you for loving my girl and for so graciously sharing this with me.

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  9. I have been out of the news loop lately (thankfully) due to now working a full time job but I couldn't let this post go by without commenting because I understand.

    There has been a lot of talk in the autism groups as well about "curing" our autistic children and it hits me. It hurts me. On one hand, I can understand not wanting our children to struggle but on the other hand, "curing" of anything would take away who are children are. The children we love. They wouldn't be who they are - struggles or not. I understand my child is different but I love my different child. I know my different child and I don't want him to be anyone or anything else but him.

    So with that, I say hugs to you and to Miss Addison. I love reading your posts and watching her grow up. Seeing her success and seeing her be her. Because I love her from afar just for who she is!

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    1. Thank you for your perspective on this, Leila. So many different ways people are trying to normalize our kids...or reject them if they aren't. But really? Normal? Who is? I'm not, for sure. Normal sounds boring. (-;

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  10. Yes, get it girl. Please God, protect these sweet babies who want to live!!! And please show their parents that rainbows are beautiful if you just give them a chance to shine.

    Your girl is beautiful and has absolutely changed my view of DS. Thank you for sharing her with us.

    Much love. -Laura

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    1. Thank you so much for this, Laura!

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  11. Yes yes yes!!! We love our Rainbow! Thank you for stating it all so well!

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    1. Thank you! I'm glad this isn't just me!

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  12. Down Syndrome is a special gift to special people. God knows who needs a rainbow and will be able to treasure a rainbow. It is so sad that so many pass up God's gift. It's a picture of salvation. So many reject God's gift and miss out on the most wonderful gift of all - unconditional love forever. Addison is absolutely beautiful!

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  13. In Irish Gaelic a person with Down syndrome is called "Duine le Dia" which literally means a child of God. It is obvious to see why! Addison is beautiful. God bless you and your family.

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  14. In Irish Gaelic a person with Down syndrome is called "duine le Dia" which literally mean "Child of God". It is easy to see why!! Addison is beautiful. God bless you and your family.

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  15. Countries bragging about disgusting statistics ... 😰

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  16. So beautifully written. Thank you.

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  17. I don't have a child with down syndrome, we wanted to adopt a baby with down syndrome but were turned down for adoption because of my health problems (that in itself has a huge backstory). I can't get my head around thinking that a person with down syndrome is somehow less worthy of life than anyone else. Every child is a blessing & brings something to this world in their own special way.

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  18. I think we need to stop bashing Iceland. I read a post today from a woman in Iceland who was highly frustrated by that CBS report. She is expecting a child with Down syndrome this year. That 100 percent figure probably came from one year when all the women who had the recommended screenings aborted. But according to this woman, many do not have the screenings. There are babies with Down syndrome born every year in Iceland. They are not eradicating all Down syndrome (even the report did not say this--they showed people with DS).

    Remember too, that Iceland is has a population of about 350,000. The abortion rate, however high, represents fewer babies than you think. (Not that I am in condoning any abortion--I'm pointing out that 100 percent could be 1 or 5, not 1000).

    CBS did not actually define the statistic. And the social media hype over the story is prejudicing people against the country unnecessarily.
    You need to remember that news agencies tell the story they want to tell. Typically there's enough truth to make it appear true, but often there are details left out that would change a viewer's perspective.

    I am a journalist as well as the mother of a teen daughter with Down syndrome. I am deeply concerned that babies with DS are an endangered species. But more babies with DS are aborted in France and Denmark than in Iceland. I have to wonder why CBS went there.

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  19. My 4 year old daughter has Down syndrome. She is a blessing to our family and to all who have the privilege of getting to know her. I did not opt for prenatal testing because I felt the medical staff were pushing for it to allow time for termination should a problem be found. We were not willing to consider termination so testing didn't make sense. I have since questioned whether knowing prenatally would have allowed us to be prepared to welcome the beautiful baby girl God planned for us instead of grieving the one we dreamed up. I have since come to the conclusion that God knows best and for us, finding out after her birth was His plan. Test or no test the issue here is how the information is presented. With modern medicine and research based educational resources to maximize potential, this is the BEST time in history to be born with Down syndrome. Why are medical professionals presenting doom and gloom prognosises and pressuring grieving, confused parents to end the life of a child whose potential is no more or less predictable than one with 46 chromosomes? It is an abhorrent practise that should be stopped. How about giving families hope by presenting all the amazing accomplishments of people with Down syndrome instead? We're only looking at the tip of the iceburg when it comes to potential. Here's an idea ....how about sinking some of that time, energy and money into research related to improving life for those living amazing technicoloured lives with Down syndrome instead? Now that would make the world a better place.

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  20. My daughter is now 24. She is 4 foot 4 and 89 lbs. What is a bottle of dynamite. She loves to dance and is very girly girl. She loves makeup and she loves boys. We knew before she was born because of the alpha fetoprotein blood test that she would probably have Down syndrome. We already knew that we were not do anything to end the pregnancy. It was my first time being pregnant and I really didn't know what all those blood test were 4. In one way I'm glad that we knew because we also found out that she would probably have some hydrocephalus. By knowing we determined that she would need to be delivered by C-section. It also showed that neither one of her kidneys would function and that she would not live after she was born. Needless to say this was very difficult for my husband and I but we believed that the Lord was in control. One thing that people do not consider is that medicine and test don't always tell the complete truth. I know a lot of people that were told that their child would have Down syndrome or some other Gene disorder and when their child was born they were perfectly normal whatever normal is. Our daughter lived she did have a VP shunt. She has only one kidney and she does have Down syndrome. I don't think any parent would wish this for their child but I don't know any parent that when their child is born with Down Syndrome doesn't love them with all their heart and their child brings so much joy to their lives and the lives of all the people that they come in contact with.

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