Thursday, December 20, 2012

The Fragile X Walk down the Yellow Brick Road

I've accepted Fragile X's place in Zack and AJ's life for now.  While they are little kids.  While we work on potty training, and accepting a bigger variety of foods, and learning to be social and play nicely with others.  I have achieved that level of acceptance.  Fragile X is here and it's not going anywhere.

Evidently I'm not as accepting of Fragile X in their lives in the future.  Because when I hear about bigger kids and adults with Fragile X, and all the assistance they still need to live, and their vulnerability and innocence, and the way their parents still have to worry and fuss over them as if they were five years old - it chills my heart.

This past weekend's guest Fragile X Writer, Cindi Rogers, has two sons who are in their 20s and she still has to watch over them like they were toddlers.   She can't go out unless she has someone to watch them.   I have a friend here in Minnesota who has a son who is 17, and her situation is the same.   She can't come to functions unless she brings her son, or they get a sitter.   For a 17 year old.  And I have known this about Fragile X and cognitive disability for years now, but it still sucks the breath out of me and makes me sad.   I guess I'm not there, yet.

I guess acceptance of the Fragile X thing is a long, long, walk I'm on.  Kind of like a yellow brick road.  I see scary things in the future, but I must trudge on to the Emerald City.  I think maybe I've met the Scarecrow, but I'm not sure I have the Tin Man with me yet, and we definitely haven't run across the Cowardly Lion.

I hope I kill the wicked witch on the way.  I could use a broomstick.

Maybe it's like that - Like Dorothy, I won't be afraid of the Wizard when I get there, even though he's loud and fierce, because I'll have been through such a journey already that he can't scare me anymore.  Maybe I'm developing courage, smarts, and heart along this way while the kids are still kids.  Maybe this is all molding me into the person I'll need to be, to be able to stomp my feet at the Wizard and say "No!  I have come all this way and you WILL help me get home now!"

Cindi Rogers is there.  She's standing in front of the Wizard, and he doesn't intimidate her at all.  She's strong enough now to make demands and get her sons' needs met, and even to make sure they have happy, fulfilling lives.
And oh, those cute little folks working in the Oz salon, who primped and prepared her to meet the Wizard - they did an awesome job.  I hope I look as good as her when I meet him.
But I bet Cindi would tell me, like the Wizard told Dorothy, that I've always had the ability to get home.  I've always had the strength and courage and smarts to do what needs to be done, and I just didn't know it.  Cindi knows.

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