Friday, October 28, 2016

Down Syndrome: A Sister's View

At the beginning of the month, I asked Holly if she would write something about Down Syndrome I could share on Facebook, IG and the blog. She said, "I don't think so," I wouldn't know what to say," "I'm not good at writing," "I can't..."

Well, she sent this to me this morning...and I think it's great! Thank you, Holly! :)

Here is her perspective on life with Joshua:

Growing up, I guess I always knew he was different. I mean, just look at me and my siblings: Three are tall, blonde-haired, blue-eyed kids...the other one is "travel-sized," with brown hair and brown eyes. He stuck out like a sore thumb! What a nerd! (I kid!)

I don't really remember if or when my parents told me about Joshua having Down Syndrome. I'm sure they did, but I just don't remember.

Growing up with a family member who is "chromosomally enhanced," you have a different way of viewing the world...and it isn't the mouth-wide-open, staring, whispering-and-pointing way that the rest of the world sees it.

It probably helped that my parents didn't baby him, or treat him any different than the rest of us. Neither did me or my two younger brothers. We fought hard and loved hard (my poor parents!).

Actually, I'm sure that made a huge difference in how I view people with Down Syndrome, because Joshua's not a baby. He's just a person. He struggles with the same things we all struggle with, except he's handled it with a little more grace.

Maybe that's due to the extra chromosome.

Now, being the only girl, and having three brothers, I like to think I'm tougher than the average bear. Still, it's always nice to have someone in your corner. That's Joshua.

He's my biggest supporter. He is always encouraging...and he never fails to tell me how beautiful I look, even when I was 40 weeks pregnant, and OVER IT.

When my Mom asked if I wanted to write a post this month, I was hesitant. She's the writer of the family. She's the funny one. She is the one that everyone says should write a book. I think those genes skipped me.

Or maybe Joshua stole those, too?

Did you know he writes?

He has an endless supply of notebooks. They are FULL or stories. Granted, most of them would probably infringe on some copyright laws...

But I digress.

I had learned about Down Syndrome before, in school...but, obviously, a lot of my knowledge was based on my experiences with Joshua. I remember being in nursing school, and learning about things from a medical perspective. This was the first time I realized that the way much of the medical community thinks about Down A LOT different than what I think about Down Syndrome.

And a lot different than what my family thinks about Down Syndrome...and a lot different than how the community of Joshua's FRIENDS think about Down Syndrome.

It was heartbreaking.

The professor for that lecture was horrible. She spoke in a heartless tone about how sad and unfortunate Down Syndrome was. I'm pretty sure my eyes saw red that day, and I'm pretty sure I (along with many others) did not give that professor a good review (for many reasons, not just that lecture). All the politically correct terminology we are told we "should use" is being shoved down our throats these days, but we still think the "R" word is okay?

Come ON, people.

But that's a different rant for another day.

Working in the NICU, I've seen several babies who were born with Down Syndrome. I've heard the negative comments, and I've heard a few positive ones.

Obviously, I do not have a child who has Down Syndrome, but I have Joshua. I know that Down Syndrome is not a prison sentence. I "get" that the situation is hard (some are harder than others)...that it will be trying...and that it will push some to the brink.

My brothers and I have all been "trying" for my parents, just in different ways. That's just part of growing up. BUT, I can see the blessings that Joshua and his FRIENDS bring to their families, each other, and their communities.

The one thing I want people to know, is that Joshua is just a person. He and his FRIENDS may look a little different (I've seen weirder folks walking around the mall, so, no need to stare). They may communicate in a different way. They have to overcome different obstacles in their lives, but that's it.

They are just...different. Not less.

They have the same emotions. They have dreams. They have friends. They can learn. They can achieve.

And, most importantly, they have worth.

And if you have a problem with that, I'll fight you.

(Again, I kid)

(Kind of)

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