Clouds, May 2010

Clouds, May 2010

Tuesday, June 7, 2011

need an UPP today

There was a water main break in town yesterday, and school dismissed early. Today, one of the elementary schools is closed. The older grades are going to be combined at another school, but the kindergarteners and preschoolers do not have session today. 

So H's day began out-of-routine but he handled it well. I explained that his afternoon schedule today would be the same. He seemed fine.

A little while later he wanted to watch this farm video that he has seen more times than I have looked in the mirror in my life. 

It's 7:30 in the morning, and since I don't need to bring him to school I am not in a hurry to get dressed. I really wanted to just chill for a little bit, and the thought of that damn farm video being on the screen was making my eye twitch. 

I distracted him by reminding him how proud I was that he sat on the toilet last night. I told him that makes me happy when he tries. And he smiled. He picked up a truck-- not the bus that he got last night-- but I could tell that's what he was thinking about. (The bus was still in his room because he insisted on bringing it to bed.) 

He asked me in his own way if I bought it for him, and I said yes, and then he said, "kind place?" (As in what kind of place.) And I said the store, and he said, "nice place?" And I said sure. And he said, "me work?" I said yes, maybe you can work there one day. And then he said, "my buddies. play golf." 

Dan has been playing golf regularly, and one time he said he was going with his work buddies. Typical of a child with FXS, Hayden likes to bring up familiar subjects. Repeatedly. I am not complaining...the fact that his expressive language is finally emerging has changed all of our lives for the better. 

But our little conversation made me think about what kind of opportunities he will have when he's older. And whether or not he'll have work buddies, and if they'll ask him to play golf. 

I'll snap out of it. It's just these little subtle things that get to me sometimes.


  1. Hi Hayden's Mom,
    Thanks for reading my blog. I am Cole's grandfather.

    Your son and Cole seemed to be similar. Your story and that of my son and daughter are exactly the same.

    I only have a few minutes, I am on my lunch break. Will revisit your blog later today.

    Life is a challenge and some are more challenged. Keep the faith and good things will come.

    Talk to you later.

    Cole's Pappy, Jim