This is a photo of Natalie at the park sometime in April (2014). We had been playing for a while and she was having fun.
We love taking her to this park because the sand is harder to walk in, so she gets some practice walking on uneven ground while also having some super fun family time. I was trying to capture a few photos of her walking (If you know me personally, this will not seem weird at all...) so I asked Mike to hang back a little while she walked over to the swing.
She realized he didn't follow her and walked back over to him and started pulling on his shirt and tapping his legs.
It was adorable.
When she knew she had his attention she walked back over to the swing and started tapping on it until Mike got there.
Natalie, as most people know, has a major communication barrier. She was diagnosed with Angelman syndrome this year. (click here to find out more about Angelman Syndrome) This was a major deal for our family! She was finding ways to tell us what she wanted, without needing words!
This morning I was looking at photos and thinking on each one, as mothers often do. While thinking on this one I realized that this was not a breakthrough for Natalie. In fact, I can remember several times where she was likely trying to communicate with me or Mike. Did I acknowledge her any of those times? Probably not...
The day this photo was taken was a breakthrough for ME.
And for Mike.
How long has Natalie tried to talk to us and been unable?
How many times had she wanted or needed something, but didn't get it because I couldn't slow down and pay attention?
How often did Natalie suffer quietly through things I wanted her to do because I didn't see that she wanted to be somewhere else, doing something else...
Natalie is so agreeable. Its a characteristic of her disability. Its called "happy disposition", which doesn't really sound like a bad thing.
Its so easy to get frustrated when it seems like She starts crying for NO REASON. I have to remind myself daily (multiple times a day, actually) that she is upset for a reason. Did I miss the sign? Was she trying to tell me something and I didn't see it? Its difficult to tell, but I am getting better at it.
Just yesterday I was talking with her teachers before taking her home from school, and she was ready to leave. She let me know this by giving me a kiss and hug to get my attention (smart girl knows how to make mom stop and listen!) and then walking to the door.
Its amazing. Every. Single. Time.
As wonderful as this breakthrough is for me, I am also heartbroken.
I have this image in my head of Natalie screaming at me that she is lonely and scared, only her lips aren't moving and I'm too busy to notice because I cant hear the words. I cant help but cry because I just love her so much and I know I have wasted so much time only listening with my ears and not my eyes.
I remember having anxiety as a kid.
I remember waking up many nights and crawling into bed with my younger sister because I had this awkward combination of adrenaline and fear that I couldn't explain.
I remember being made fun of because of it, but dealing with it because when I felt that way I didn't want to be alone and she was the only person who would let me in.
I remember my parents being irritated laying in bed with me while I shivered even though I wasn't cold; tears rolling down my face.
I remember being sent back to my room & being laughed at during thunderstorms even though the fear was crippling.
I never could explain exactly how or why I felt like I did. Im convinced that if I could have, people would understand.
My parents would have understood....
I remember everything. I don't want Natalie to feel those things and me ignore her because I can only hear with my ears, and not my eyes.
Natalie has an opinion. She has times of fear, frustration, sadness & even times of loneliness.
When she is upset I have to remind myself that her disability does not exempt her from human emotion.
Being unable to express emotion isn't the same as not having emotion.
This is just a bittersweet throwback Thursday for me, I guess.
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