Fragile X-Traordinary: So thrilled

Tuesday, November 25, 2008

So thrilled

I came on here tonight and didn't realize that people were posting comments! I'm so happy you are all reading.....
About the eye contact... I agree with all of you. If he's a comfy distance away he'll stare right at you. At his well baby exam last week (6 months!) the regular pediatrician said he had a slight gaze aversion also. But I think he was looking for it because he had just read Dr. H's report. I'm not discounting the fact that he has FX, but I don't think he would've thought anything if he didn't know Pup had fragile x. What baby stares at your face for 10 minutes! He's doing well and that's what I'm grateful for this Thanksgiving. Considering I prepared myself for a floppy, poor feeding, etc. baby during my pregnancy so far I've been blessed. I hate Fragile X and what it's done to my life. I'm tired of analyzing everything he's doing. I just want to love him and I think that's what I'm going to do.

His ears have to be watched as he didn't do well on the right side on his hearing test. He may need tubes although he hasn't had any ear infections.

Anyway, I think Pup started saying baba tonight....I can't be sure but it sounded like it. Maybe if I believe it it'll be true.

AJ, at school today, said that on Thanksgiving he's going to eat PB and J sandwiches. I thought that was funny.

1 comment:

Anonymous said...: No ear infections rock!! I don't get why he would need tubes if he has never had one. Seems like it's a little excessive :(; November 26, 2008 at 6:17 AM

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Welcome to Holland

c1987 by Emily Perl Kingsley. All rights reserved

I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It’s like this…… When you’re going to have a baby, it’s like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It’s all very exciting. After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, “Welcome to Holland.” “Holland?!?” you say. “What do you mean Holland?? I signed up for Italy! I’m supposed to be in Italy. All my life I’ve dreamed of going to Italy.” But there’s been a change in the flight plan. They’ve landed in Holland and there you must stay. The important thing is that they haven’t taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It’s just a different place. So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met. It’s just a different place. It’s slower-paced than Italy, less flashy than Italy. But after you’ve been there for a while and you catch your breath, you look around…. and you begin to notice that Holland has windmills….and Holland has tulips. Holland even has Rembrandts. But everyone you know is busy coming and going from Italy… and they’re all bragging about what a wonderful time they had there. And for the rest of your life, you will say “Yes, that’s where I was supposed to go. That’s what I had planned.” And the pain of that will never, ever, ever, ever go away… because the loss of that dream is a very very significant loss. But… if you spend your life mourning the fact that you didn’t get to Italy, you may never be free to enjoy the very special, the very lovely things … about Holland.