Thursday, June 28, 2012
A relative we don't see often was asking me about Emily.
"How is her heart?"
I told him that for now her heart is awesome.
"How is her development?"
She's advanced in some things, and delayed in others, but she's doing great, and she responds really well to therapy...is what I said.
"What effect will her syndrome have on her IQ?"
Yes, he really asked that.
I told him that she might have some learning disabilities.
"How will her syndrome affect her emotional state?"
Again...I couldn't believe he even knew to ask this question.
I'm trying to be honest and open about Em and her chromosome deletion.
I don't ever want it to define her, but if someone asks I will tell them.
There is a greater chance that Em could develop bi-polar disorder or schizophrenia in her late teens or early adult life...that's what the research shows.
I hate that research, and I try really hard not to focus on it, but it's there and my uncle asked.
His response really surprised me.
"I can see that as a possibility; she's really emotionally detached from life."
I had no response.
What I wanted to say was 'you've seen her twice in her entire life, she doesn't know you, and you have no clue what you're talking about.'
I didn't say anything.
But I thought about it all day long.
Later in the day Em was watching Mickey Mouse Clubhouse...again.
At work it's the only show I have and we watch it while she's eating, to keep her entertained.
Em has the same response to every Mickey Mouse Clubhouse we watch except one.
One of the episodes has bees, and Emily has something against the bees.
The first time she watched it I thought she was going to have a heart attack.
Yesterday when she watched it I recorded it so that Jason could see what I mean when I tell him about how Emily reacts.
I laugh every time I watch it.
And Uncle? If you were Mickey Mouse, I can guarantee you would feel differently about Emily's emotional attachments!
Posted by Noelle at 11:38 AM