Sunday, February 19, 2017

What's It Like To Live With Someone With Down Syndrome?

Like most bloggers I'm sure, I've occasionally asked myself why I blog. Why am I telling you my story? I mean, we're really not that different, we've all experienced pain, we've all felt lonely at times and deep down we all want to be liked. So what sets me apart?

Well, of all my friends, of all the people at my church (1500 each Sunday) my family is the only one who has a child with Down Syndrome. I know people who have kids with Down Syndrome, but in my circle of friends that I see each week and hang out with, I'm the only one. So that's why I write. To share a glimpse into our lives, to open the door and invite others in to see what it's like to live with someone who has special needs.

We've raised 3 daughters, two typical developing and one with Down Syndrome. Over the years I've found myself noticing the different ways they interact with friends, the way they grow and learn. I used to think it would be gigantic things that would separate them, but 30 some years later I can tell you that it's the little things.

For example, the other day I was washing the dishes and wanted to clean the cutting board so I asked Beth (she was watching me work) to go into the laundry room and get the bleach and an old scrubber. She brought out the scrubber and then went back in but never came out. I could hear her making noise in there and I thought she was getting it but I hollered in to her, "It's the smaller bottle next to the laundry soap."

Still nothing.

Now, you're probably thinking, 'Maybe she doesn't know what bleach is,' but she's been with me so many times when I've bought it at the grocery store, I've explained to her what it does and I've even shown her how to use it. So I figured of course she'd find it in the laundry room, but she didn't.

In the mean time I'm standing there with the water running, trying not to just go in and get it myself.  It'd be so much faster...

Instead I told her to just bring out a bottle and I'll tell her if it's the right one. She held one up and yep, that was the bleach! "Good job Beth, thanks." I could tell she was proud of herself as she leaned against the counter to finish watching me work. 

Now, if that had been Sharaya or Diana, they would have continued to tell me what happened at work or whatever as they disappeared into the laundry room and our conversation would have continued on as they put the bleach on the counter.

But with Beth, so often our lives stop as everything becomes about reaching the objective, of her processing what's been asked of her and then trying to complete the task. The example I gave may seem like such a small thing, why even make a big deal about it? But for parents who have a child with special needs it's like this every day. Each thing can become a huge event, a monumental task that takes additional time and energy to complete. 

Even something as small as getting the bleach.


Billie Jo said...

Thank you for sharing your heart and your soul with us, Cindy.
I am so thankful to be able to share your days with you and your dear daughter. : )

Rebecca Jo said...

I always say that God gives such patient hearts to special needs parents. I have a friend with a special needs daughter & it just amazes me the love & patience she has for her girl... I'm sure its like that for all parents but even a tad dose more with those amazing special gifts God gives you.

Junior said...

Beautiful family, so glad I finally had a moment to sit down and look through your blog. Loved reading the stories about your daughter.
Blessings and thanks so much for stopping by Junior's blog.

Katie Clooney said...

First of all, Cindy, I positively adore that pic of your 3 beautiful girls in their little pink coats!!! Positively precious. You do such a wonderful job helping your reader get to know Beth - through her actions and through your heart. I was raised that people with Down Syndrome are God's angels. Enjoy your week.

Jody Lynn said...

I love reading your posts. Beth is a riot, and I always appreciate her fashion, your family gives me an insight of how very normal we all are. it also helps me know that beth or anyone with special needs is very approachable just in a different way and I feel much more adept at handling that type of scenario.

That picture is proceless.

Thanks for sharing.