Down syndrome · Uncategorized

Fearfully and Wonderfully Made.

Abby’s pretty much a rock star when we go out. People go out of their way to tell me how cute she is, to talk to her, to be close to her. I love this. Most people see her and think she’s beautiful- and not in spite of her Down syndrome. Abby is beautiful.

There have been a few times where people haven’t been so kind. I’ve written about it before. Most of the time, people don’t mean harm. They come from a generation that thought differently about people with Down syndrome, or they have their own preconceived notions about the ‘burden’ my daughter is on society and me.  Sometimes they pity me.

When you get into the clinical description of Trisomy 21 (Down syndrome) you hear words like, “mutation” and “abnormal.” These words aren’t meant to hurt, they are meant to describe. There are other words that usually aren’t meant to hurt, but are still too often used in society at large. I’ve heard a few people use the word “mongoloid” to describe my daughter, a few have used the word “retarded” (in the clinical setting, speaking of specific issues of growth and development, this doesn’t irk me the way it does when I hear people use it to describe HER or in using it in ANY OTHER WAY).

Words have meaning. Using a word like “mongoloid” or “retarded” says more to me about the person saying the words than about my daughter, but they still sting.

When I look at Abby, this quote from Psalm 139 comes to mind: “I am fearfully and wonderfully made.”  Abby has an extra chromosome. The expression of that extra chromosome can make a lot of things challenging in her life. But no life is without challenges. Abby is wonderfully made. For what she lacks in words, she makes up for in expression. She may be delayed in several areas, but her ability to love is not hampered.

Abby was made this way. She is not a mistake. She is not a mongoloid. She is my daughter. And I’m grateful for every bit of her- extra chromosome included.

gggggg

 

32 thoughts on “Fearfully and Wonderfully Made.

  1. “She may be delayed in several areas, but her ability to love is not hampered.” THIS. This is the thing which *leaps* out at me every time you write about your daughter. Every picture you post (even when she’s ebing ornery!)…the love which emanates from within her. Perhaps I am so drawn to her because she reminds me of my son (only without the extra chromosome).

    I suspect some of that ability to love is magnified by the nurturing she gets at home. That, too, shines through.

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    1. She is well loved at home…as you can see from the picture. Has got her dad wrapped around her little finger. Thank you for saying that. Made me WISPY.

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  2. That phrase always speaks to me. I am not a religious person or even a believer in God but this phrase is poetic. It is a quote in the front of one of the books I was given when Wesley was born and has stayed with me ever since.

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  3. Sometimes when we’ve been out, people comment on how cute our daughter is. She is now 7. The comments still come even after all this time. She has also been given things (just a couple of times) over the years by vendors of businesses. I’m sure it’s because of that extra special chromosome.

    I think it’s okay. So far.

    I have never heard the ‘R’ or Mongoloid word used ever. But I have talked to individuals who have absolutely no clue what it’s like to have a kid labelled with a disability. They have no hands-on experience to know that they are just the same as their own ‘normal’ kids. No distinction really.

    Thanks for your post.

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  4. I LOVE everything about this post. EVERYTHING! I’m going to go look up that scripture now. Abby is simply stunning. As are you.

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  5. SHe is one of the cutest little girls ever. Right up there with our Tily. They have a way of doing thinks you would loose it if your other kids did but with them they can somehow get away with. Just by looking up at you and knowing they are the cutest thing ever. We love Abby.

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  6. I am developmentally, though not cognitively, disabled. Alas, I sometimes fear that I am not so wonderfully made (but of course, if God said it, who should I be to argue?) I stumbled across this site completely by accident after mistyping the address of a site I visit far more frequently.

    While I have never met you nor your daughter, I suspect, from your description of her, that despite her “disability,” there is nothing that disables her from doing what’s really important: loving others, doing unto them as she would have them do unto her (and, in so doing, loving God), et cetera.

    I enjoyed the post. Perhaps I should return, and not by accident next time!

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    1. Ken, you made me cry. You said it best, “There is nothing that disables her from doing what’s really important: loving others”
      Thank you!

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  7. Loved reading this. It’s true. She is beautiful. I admit, I lurk to check out her cute face!
    Thank you for the generational perspective. Funny, that is the group that has made the most hurtful remarks since Madeline died. I had an Aunt say, “Well, honey, she was going to have so many challenges.” Another person said, “It is probably for the best, who would have taken care of her.” Talk about wanting to punch someone in the throat. You are right. It is their generation, their ignorance to.
    There was also a woman at church who use to tell me how I took such good care of her. Sweet but odd, like I wouldn’t, why?
    Thank you!

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  8. One time at the park, I found myself struggling to explain my son’s behavior to someone. I finally choked out something like, “He has some developmental delays.” The woman looked at me for about three seconds and then she shrugged. “Oh!” She said, “Well, don’t we all?”

    I wanted to hug her. Hard.

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  9. I love this post as when my second son was born this was the verse I had at his birth, two years later he was diagnosed with Autism and since then I have been learning how true it is. Fearfully and wonderfully made.

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