I’m a bit at a loss for what to post today so I’ve decided to do a picture post.

This is Monkey, 3 years ago. It was taken a couple weeks before his 1st birthday. He was “reading” his one of his all-time favorite books, The Poky Little Puppy.

. . . → Read More: Stumped.

One of the most difficult aspects of Fragile X for Duhdee and I is managing our expectations when we are planning activities with Monkey. It may be that we’re excessively childish, as I sit here I’m listening to Duhdee scold one of our fish for disturbing a plant in the tank so that . . . → Read More: Managing Expectations.

This was written in 2006, about 3 weeks post diagnosis.

***

“A journey of a thousand miles begins with a single step.” – Confucius

Though, sometimes, it begins with a phone call.

Last week we received a call that freed us from weeks of worries but the call was premature. The receptionist at the . . . → Read More: Another distant memory…

FXSmom over at Fragile What!? had a great idea to share memories of her life with Fragile X so I’ve decided to join in as well. I’m going to cheat for my first post though. I wrote this in 2006 about two weeks into our journey. Reading it makes me angry all over again. This really set the stage for our first year as parents of a special needs child and perhaps makes clear why I noted on Monday that our first 6-12 months were really rough ones.

***

Under the best of circumstances hearing that your child has Fragile X is going to suck. It rips your heart right out of your body, without a doubt. Even in the weeks we were waiting for the test results we knew this. Anytime I would try on the diagnosis I would feel like I’d been punched in the stomach. Tears were inevitable. But how we learned that Monkey had Fragile X? Well, that was inexcusable.

Continue reading I’m joining the crowd.