Friday, February 6, 2015

He died in 1893...

Sister is "reading" in the living room.

I can hear her in her studious teacher voice, "reading" her chapper books. (I love that she calls them chapper instead of chapter. It's just one of those endearing qualities about Sister.)

I'm in my bedroom down the hall and that's what I heard her say when I sat down to post tonight, "He died in 1893."

Sister reads, actually quite well.

She doesn't have the patience to read a book though.

She just makes up the story/text as she goes along.

It is amazing how intelligent she sounds—as if she is reading an autobiography in there.

She would be such an amazing author.

Her imagination is astounding.

She is wise beyond her years.


I am amazed at all she absorbs from her life, surroundings and schooling.

To listen to her "read" is like receiving a recourse on all that she has been exposed to that week.

She's still "reading" away in there as I type and I can't help but wonder what a genius she might be if her Fragile X Syndrome wasn't holding her back.

But, as I giggle a little bit, hearing her rattle on about this fictitious man who died in 1893 and the family he had and how people felt about him, I can't help but be grateful for that part.

The giggling part.

I love the fact that her personality brings such joy and intrigue.

Would it be the same if she didn't have a mental impairment?

I don't know.

It was so interesting a while back I was privy to a little selfie video that a young lady with Fragile X Syndrome had done. I want to give her credit here but it was a private video and I don't want to embarrass her, but it changed my outlook, my hope and my understanding. In this video she explained what it is like to have FXS and the challenges and struggles it has brought on. It was touching to hear her maturity and her frankness in the matter. The thing that stuck with me the strongest though, was when she said something along the lines (I do not have a direct quote) that even if there were a cure for FXS that she wouldn't take it, because she likes who she is.

Powerful stuff right there.

I have to remember Sister's "reading" days and her socially outgoing and happy days when it is a really hard day. I have to remember that she is perfectly herself.

So I'll enjoy her just how she is.

As long as she will love me just how I am.

I guess that's what all of us hope for isn't it?

And... my UP for today is just this post: I love hearing Sister "read."

Day 37 of 365 Days of Up

1 remarks:

Karen Mortensen said...

Very nice post. I often wonder how my son would be if he didn't have Fragile X.