Wednesday, June 27, 2012

The Truth About Down Syndrome

Normally, we like to keep things light-hearted and fun here on CCE, but I was reading through various blogs last night after my girls went to bed and I ran across a post that spoke right to my heart and it inspired me to address this topic.  You can find the post here on Life's Little Surprises.  Shannon is a mother to a beautiful little girl who has Down syndrome and she wrote about the moment when you tell someone that your child has Down syndrome and you are met with pity and sadness, as though you've just announced that your child has a terminal illness. 

A few years ago, I made an appointment with a new hair stylist and we were making typical salon small talk when she asked about my family.  I told her that I have an older sister who has Down syndrome and she said "Oh - I'm sorry!"

I'm sorry?

I didn't announce that my sister just passed away.  I said that she has Down syndrome!  That comment hurt me and haunted me for days (it is obviously still with me) and I never returned to that salon.  That wasn't the first nor only time in my life that I was met with an attitude of pity or sympathy when I informed someone that I have a sister with Down syndrome, but it was perhaps the most blatant. 

And the thing is that this woman wasn't trying to offend me.  Her comment was spoken out of ignorance.  I've since realized that one of the most important callings that I have received in my life is to inform people that life with Down syndrome is a beautiful, purposeful, and abundant life worth living. 

I struggle with how to articulate this message.  In March, I wrote a guest blog post on A Perfect Lily and I said:

... I firmly believe that God creates people with disabilities to offer the rest of us a prism to view life as He intended us to view it; stripped of all materialism and superficiality.  Those of us who are lucky enough to get to look through this prism are forever changed...I hope (and truly believe) that anyone who encounters Leanne or Josie is relieved of ignorant misconceptions about Down syndrome and that those misconceptions are replaced by an appreciation for the value that Leanne and Josie bring to this world.

You can find the rest of the post here.


 My sister influenced my life in such a positive way that I decided to adopt a baby with Down syndrome.  My sister influenced my husband's life in such a positive way that he wanted to adopt a baby with Down syndrome. 
So in response to that stylist and everyone else who is inclined to bestow pity upon me, I say,

I'm sorry that you haven't had the opportunity to experience the incredible contributions that individuals with Down syndrome make to this world. 

I will spend the rest of my life trying to communicate this message.  If everyone was fortunate enough to experience the beauty that Leanne and Josie bring to our lives, it would undoubtedly make this world would be a better place.

22 comments:

  1. love, love LOVE this post. Did I mention I love it??! BEAUTIFUL pictures too !!

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  2. I totally agree! I hope when people meet our little girls with Down Syndrome that their way of thinking about it are forever changed!

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  3. I love this post too! I'd like to tell you that you are not alone in this mission. I have also encountered people who, meaning no harm at all, have expressed sympathy when they have learned that my son has Down syndrome. There was the well meaning elderly woman in the grocery store who, upon noticing my son's beautiful almond shaped eyes, proceeded to pat him on the head & whisper, "Oh bless his poor little heart". At the time, my son was an infant, & I didn't know whether to laugh or cry, so I did both. Then there was the coworker who, upon hearing the news, offered to carry the object I was holding because my life must be "so difficult". (I'm not kidding). The great news is that as people have gotten to know my son personally, their attitudes have changed. I have had multiple friends tell me that they no longer fear the possibility of having a child who has special needs because they think that my son "Joshua is awesome". Hoping that together we can spread the word that living the chromosomally enhanced life is, in fact, the good life. :)

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  4. I love this. Leanne has had such an impact on MY life and I don't have the pleasure of knowing her or you in real life. You two, along with Josie, have shown me what a beautiful, caring, and fulfilling life ALL my girls will have. Whether they have 46 or 47 chromosomes. I too have had friends come to me and tell me they were no longer concerned about medical tests that might show their child might be "different" because of my precious daughter. Keep up the wonderful job of sharing all we have to look forward to.

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  5. I'm with Patti...Love this post. I had a gal at our bible study tell me how sorry she was when she heard about Alayna's ds diagnosis. I stopped her and said we aren't sorry and explained the blessing she is to us.
    Education is key and I am so thankful so many of us shed a beautiful light onto ds! Your family is awesome!

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  6. Ugh, reading through tears is really difficult but this post is awesome. Just awesome.

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  7. Beautiful post!

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  8. So beautifully written!! Educating people is an important mission!! I have felt for years that I will have a baby (at this point most likely through adoption) with down syndrome. Unfortunately I have not been blessed with her yet, but I am waiting for God to bring her to me!!

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  9. Beautifully written - wonderful message for everyone.

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  10. Love your post!
    From Kristen in WI

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  11. I'm new to your blog (and Patti's), since the birth of our sweet Moriah this past Mother's Day. Thank you for sharing your beautifully written words of love. Just six weeks into our journey, I'm completely convinced you're right. :)

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  12. Simply Beautiful! How difficult it is to find the words, but you always manage to explain it perfectly! I like to 'educate' simply by making sure to have playdates with my friends and their children in hopes that by fostering those relationships I create more educators!

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  13. I've encountered the I'm Sorry...and it is a tricky walk, sometimes I ignore, or say, "Don't be. He's wonderful." or make a crack about him starting a band one day called Up Syndrome to educate people that kids with Trisomy 21 rock, but I also know that sometimes, the way I bring up his down syndrome, might elicit that response. By that I mean that I use his condition as a descriptor, which is stupid, because that is not all that Paul is, and I do not use my other children's conditions --needs glasses, has ADD, struggles with shyness, with impulsivity...as their sum total descriptions. The other nine are simply their names and ages. That unintentionally, I convey by mentioning it as part of intoducing my children, that DS is a bad thing, because I sometimes lament that his cross is visible to the world. Love your blog. Subscribed. You have a great message and mission, thanks for teaching this mom of ten today something better.

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  14. My son has CP and we are familiar with these reactions. We adopted him, and the question I most hate is when people ask if we knew there was something wrong with him when we agreed to adopt him. So many negative connotations in that statement. He is quite verbal now, and when asked why he can't walk explains that "my brain doesn't talk to my legs very well." A child once said, "that must make you sad." His response, "I'm not sad, I'm happy!"

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  15. I love this post! While in University I volunteered with an organization that paired college students up with older adults who had down syndrome. It was the best volunteer experience I have ever had and it has fueled my fire to adopt a child with down syndrome. I've always said people with downs syndrome know how to live an amazing life. You are right, they don't know about materialism or superficiality, but they do know true love, true laughter, true joy and have the biggest hearts out there. They live with no cares, they don't worry about what others think, they just simply know how to live a true life and that is such a blessing. I know my life was impacted in a very positive way through my experiences and I hope when my husband and I do adopt we can be an advocate as much as you are.

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  16. I too have had the same comments when I tell people about my wonderful granddaughter...I can't help but feel sorry for those people though...at the beginning I had a hard time when people responded to me that way...but soon realized that I am so lucky to have been blessed with this fabulous little girl in my life and "I am sorry" for those who are not so fortunate..for they are truly missing out. I loved everything about this post.
    Lynette

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  17. I could wet myself from the cuteness of Travis and his little ladies. SO. DARN. SWEET.

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  18. Ah, I love this post. I'm still taken by surprise at the people that express sympathy. I've said it before, but I absolutely love getting to read your perspectives both as the sibling and parent to ladies with Ds. Obviously I'm experiencing one of those myself, but I love that your insights may help me understand my kids' relationship a little bit.

    Have you written before about when you became aware that your sister had Ds? If you even remember? My younger (typically developing) daughter is 3 now and I don't believe she knows her brother is any different from anyone else and I wonder when she'll become aware of it.

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  19. Thank you for writing this. I have so enjoyed your blog postings and can't wait to "hear" the next thing Leanne is going to say :) When I am with people like your sister I feel so free to be the person I really am. That is a gift, to be able to make others feel that. Your mother must be very proud of both of you girls, I know I would be.
    Lisa

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  20. clearly that salon employee never met Leanne or she wouldn't have said that. Heck, just reading your blog, I wish I could have Leanne as a sister!

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