An unexpected revelation on my kid’s extra chromosome.

It came across my FB stream via my friend Michelle.

I’ve always known that language shapes perception. That is why I fight so hard against the use of the r-word.

But this, this never even made my radar. Maybe it’s because I don’t focus on the Down syndrome as much as I do about the whole keeping a kid alive thing.

A quote by Rose Mordi, Nigeria at the UN conference on World Down Syndrome Day:

Down syndrome is a naturally occurring chromosome arrangement that has always been part of the human condition.

…..naturally occurring. Not an abnormality. Not a disorder. Not ‘What’s wrong with him?” Not a 90% abortion rate.

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I have a naturally occurring chromosome arrangement that has always been part of the human condition.   My life has just as much value as any other, including yours.

Can you imagine a doctor walking in and saying, “Your baby has Down syndrome. Don’t worry though. Children have been born with Down syndrome since the beginning of time. Down syndrome is a naturally occurring chromosome arrangement that has always been part of the human condition. Your child will be blessed to be a member of an amazing population of people that make this world a better place to live in.”

Something as simple as the language we use could change the perception of how the world views my child and so many other children.

What a wonderful, wonderful world it would be.

 

About Tammy and Parker

Special Needs Blogger, and homeschooling Mom, heavily involved in advocacy for all kids with special needs in Utah.

Comments

  1. LOVE THIS.

    • Tammy and Parker says:

      Thank you krlr. I floored that quote….and kept wondering how I didn’t come up with it first…it really could be so easy couldn’t it?

  2. Rebecca Black says:

    Thank you SO MUCH for sharing this!!!

  3. OH! Just fantastic and YES, it flies in the face of “what’s wrong with him?”. Brilliant, Tammy. Thank you. X
    Alice recently posted..“that’s the best lemon cake I’ve ever tasted” (happy birthday Dave)My Profile

  4. Cathy Thompson says:

    Oh…this is fabulous!!! Thanks for sharing!

  5. I thought much the same when I first saw those words…. thank you so much for putting this perspective into words!

  6. Natalie says:

    Beautiful use of words! This entry will be shared by many and we should all spread it! Thank you so mych for putting it in such beautiful context! Maybe the NDSC may want to use this as their next campaign :)

  7. Wow!
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  8. That’s very interesting. My granddaughter was born 5 weeks early and has been in NBICU for 5 weeks. It only helps to speak truthfully. We are still processing her DS. She’s a beautiful baby and I absolutely know she was meant to come to our family. But we don’t know her yet. She’s still a newborn struggling that we have only briefly held. So I’m encouraged by your confidence and leaning on your ability to thrive. I pray we will give Eliza the wonderful family life you’ve expressed for your child. This statement makes me hope we can change perception. I have mixed up emotions as I worry about my daughter being able to handle a sick newborn and 2 year old. What would have happened to Eliza if she didn’t have the excellent care? I don’t know. These are things I can’t express openly. I just need to be confident and supportive of my daughter. Eliza was born on my moms birthday. I do know my mom was with me and Eliza that day. It had to be hard for her to be in a little body struggling for life. Poor sweet baby.

    • Tammy and Parker says:

      Nanette,

      I’d love to talk with you more in depth. My email addy is hods5mom@aol.com. I notice that you are local. I can share my phone number with you via email.

      It’s scary at first. Especially when your little granddaughter is still in the NBICU. You’ll find your way. There will be what feels like set backs…..that is entirely normal. But as time goes on you’ll discover that this newest member of your family is more like your other grandchildren than different. And you’ll find a joy you never even knew existed. That I promise.

      Let’s talk more, okay?

      xoxo

  9. Michelle Revor says:

    love this! I don’t know what we did to deserve our baby girl Cameron but I’m glad we did it, I would’ve never know how incomplete our lives were.

  10. Love, love, love!

  11. Beautiful, and SOOO encouraging in the face of starting to hear that my Noah may not be as “high functioning” (I hate those words) as originally thought. What level of functioning he is really doesn’t change anything, does it? He is exactly how God created him to be, isn’t he, and oh-so wonderful at that. It’s enough, he is enough and HE is enough.

    God bless you, Tammy, the Lord is using your writing in such a powerful way.

    Alyson

  12. Yes, it would truly be wonderful if doctors told new parents that their child has Down syndrome in this way! It would be absolutely lovely! Thank you for a beautiful post. <3

  13. This is beautiful. I love it.

  14. Julia says:

    Love this and what a beautiful child!

  15. During my first trimester screening, we received the news that our baby had a one in five chance of being born with Down’s syndrome. We decided to have further testing done to confirm the diagnosis (or rule it out). We did so, solely to prepare ourselves and our older son. We had no intention of terminating the pregnancy whatsoever. When I arrived for the CVS screening, the neonatologist asked me why I was having a CVS screen. I told him we were informed that our baby had a one in five chance of having Down’s syndrome. I’ll never forget his response. He said, “I’m sorry.” My reaction was visceral, I was instantly annoyed at this arrogant man. I responded, “I’m not. We will have this baby and love this baby no matter what. If God choose for my baby to have Down’s syndrome then so be it. I’m not sorry about my baby and I never will be.” We were not able to have the CVS screen that day but we were ok. Tragically, the very next day I suffered a miscarriage and lost my beautiful son. If we were allowed to choose in this life, I’d choose a million times over to have a baby with Down’s syndrome over having to live through losing a baby. That quote is so beautiful. I wish more doctors could understand that different is not bad.

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