Wednesday, May 28, 2008


This is my niece Danielle. I love her to bits and pieces. She is the sweetest, most sensitive girl I know. She knows she has Fragile X, and is starting to deal with it. When I say deal with it, I mean hate it. She has some difficulty in school--not a lot, mostly math and staying organized. She has quite a bit of anxiety. She gets sick to her stomach and worries excessively. I have had to pick her up from school on a few occasions because she was sick, only to find out later that she was sick with worry about something. She has confided in me that she wishes there was no such thing as Fragile X. I gently pointed out that everyone has difficulties in life, even if they don't have Fragile X. She'll get to a point where it's ok, but I know well that it is a process. Heck, sometimes I wish there were no such thing as Fragile X, too!

Anyway, Danielle is very creative, and loves to draw and color. She has recently discovered Webkinz, and anytime she comes here or my parents' house she can be found on the computer. I don't mind, because that is a typical kid thing to do.

We visited their house the other night, and her friend was over. Her mother reminded her to include my boys in her playing, but as someone with fragile x boys knows, they don't always play in a typical manner. Drew wasn't all that interested in playing, and would rather wander around their property, flapping his hands at things. And while Blake was interested in playing with her, he is three years younger than her, and is more of a tag along than a playmate. So, she made a couple attempts to invite the boys to join them, but for the most part, played with her friend.

I babysat for her then next day, and she was not acting like herself. She said, "Kristie, my stomach hurts." This is the first indication that something is bothering her. I asked her what was wrong. And, as usual, she said, "Nothing. My stomach just hurts." I finally got it out of her that she was worried I was mad at her for not playing with my boys enough the night before. I told her I understood, and I wasn't mad. I suggested that maybe since she was here alone with Blake (no friends), that she spend some time playing with him. She readily agreed. And she said her stomach felt better.

Sometimes I ask her if I can keep her, but that makes her a little nervous, too.


fragilemom said...

I often wonder what Avery will be like in a few years. I try and try to think that some of her 'issues' are just normal kid stuff, and they may very well be. But the 'worry' side of me struggles with what it will be like for her. She has a HUGE fear of noises. She FREAKS OUT and begs me not to run the vacuum. Since we've been in the house 2 weeks, she still will not go to sleep in her room without dad on the floor (which is a step up from a week ago, when she wouldn't sleep in her room at all). The reason she won't is because she's TERRIFIED of the neighbor's dogs when they bark, and she's TERRIFIED if she hears an airplane go over (although not as terrified as she is of the dogs). Since Ian is SOOOOOOOO loud, she often freaks out at him, which always causes an interesting match between the two.

Also, as a mother of boys with FX, yes, I know the interesting play style. Ian is so not socially capable yet. He seems to be getting better, but still usually ends up upsetting any other kids he might play with. This causes me great anxiety about getting him around any kids to play with, but I don't want to exclude him either.

So, we just keep praying.... a lot.

Jen said...

I've never like to attribute Chelsey's "differences" to her FX status. That may be because we didn't find out about her status until she was 12, but I also think that people just have their differences. I do keep an eye open for any serious issues, but I don't sweat the small stuff.
A funny from when she was 2 (or younger)...She had an insane fear of "crud" while taking a bath or after the bath. If the smallest piece of anything was floating in her water, she would freak! After her bath, I would bring her to her room to get her dressed. If there was a piece of lint on the floor, she would contort her body while screaming so that she wouldn't touch the floor. It was funny. She's always been quiet, especially in elem. school, but her dad is also a quiet person (I've heard he was very shy in elem. school), and he doesn't have FX. We'll never know which of her qualities come from those expanded chromosomes, and which ones are from her other ones.

Anonymous said...

omg...this sounds EXACTLY like my baby girl. Too bad we aren't closer and they could hang out :(

Paula Fasciano said...

When I read about Danielle's symptoms....I thought, wow, I remember being like that as a kid...heck, I'm still like that now! At least I didn't know what it was called, it must be difficult for her.