Tuesday, October 2, 2012

{31 for 21} Confession.

When I heard Ellie would have Down syndrome, I worried about foolish things along with the real things.

Some real worries were her open heart surgery, her duodenal atresia repair, and the NICU.  Those are "has been" worries; we've made it through those worries.

I worried about Ellie speaking, but she's starting to talk, so that worry is less now. I worried about her walking.  I wanted Ellie, more than anything, to walk at 16 months.  She didn't.  And she still is a crawler.  But that's not as much of a worry as I thought, although it's frustrating at times.  She can get into trouble with the best of 'em, so I suppose I shouldn't stress too much.  Her physical therapist pointed out that although she isn't walking yet, she is getting into just as much trouble as any other kid her age, which is good for Ellie's exploration of her world.

I worried about Ellie having friends.  I'm less worried about elementary school, but I am worried about middle school and high school.  I don't worry about Ellie's social life as an adult, but those seven years of secondary school still concern me.  I think those will be the critical years for Ellie to have friends with disabilities as well as friends without disabilities.  I want her to be included, but I also want her to have a best friend who gets it.

Recently, I went running with a group of mamas in the neighborhood.  To my knowledge, I'm the only parent of a child with special needs in the group.  As we chatted, I realized that we all worry about middle school and high school.  My worries are real, but not unique.  And Ellie isn't yet two.  I can relax.

Rockin' the dorky shoes.

When I got Ellie's diagnosis, I worried most about foolish things.

I worried about Ellie being pretty.  I worried about what people would think or say.  I worried that she wouldn't be fun.  I worried that she wouldn't be able to communicate.

I worried that Ellie wouldn't share our interests.  I worried that she'd be weird, or different, or that we wouldn't connect.

I worried that she'd wear dorky clothes.  (Sometimes she does.  I dress her.  My fault.)

But never once did I worry about whether or not Ellie would be loved.  Never once did I ponder how her extra chromosome would impact her faith.

I worried so much about foolish things.

I heard a sermon recently about how we are created in the image of God, not so much in our reason, but in our ability to love and to worship.  As I sat listening, I realized that description is much more apt than our reason.

We are called to be people of love.  I can hold into that hope for Ellie.

And lucky me, she happens to be fun.  And pretty, even if she wears dorky clothes sometimes.  I'm going to continue to try not to worry about the next eighteen years.  I'll be holding onto my sweet girl and knowing that she is created in the image of love.
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  1. I hear you about worry. It helps to break it down, doesn't it? Day by day, each day will take care of its own.

    And I can't imagine your little cutie in dorky clothes :).

  2. Yep. I tend to think that kids develop unevenly- like they either do motor (walk etc) or language, rarely at the same time (too much juice goes to one and away from the other), my comforting theory :)

  3. We worry so much in the beginning about the differences and then slowly begin to realize that EVERYONE is different. Different is okay, there really is no such thing as normal. Normal is a middle school fantasy or world view that stays with us for a long time. It's hard to let go of that fantasy. Ellie is doing great. She has all she needs...Love.

  4. I have followed your blog for a while now. I love the pictures and stories of your precious gift. I had the good fortune of growing up in a community with quite a few down syndrome people. I am blessed to have one as a best friend. We didn't meet until High School but I knew from the first time we met she was a beautiful gift from god. I have always admired her untainted view of life.

    My youngest had a downs syndrome boy in her class when they went to a science camp in 7th grade. My husband was a chaperone. His father confided that day that he was completely amazed by the other kids. He thought the other kids would just tolerate him but instead they truly were his friends and cared about him.

    As a mother of children who are now grown, that are not special needs. I can tell you we all find silly things to stress over. I look back now and laugh but it doesn't keep me from still worrying. They are always our chldren but god has it under control. Have a blessed day. Rita


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