This one isn’t about fragile X, it’s about respect.

I’m not even sure where to start with this one. I’m sitting at my desk, surrounded by glass and curious co-workers, crying. There are a lot of days when I am brought to tears by one thing or another but it’s rare for me to be so upset that I cry at work. This, . . . → Read More: This one isn’t about fragile X, it’s about respect.

IEPs and the fear of the unknown.

It seems to be human nature to fear what we don’t know…I know it’s certainly true for me!  I’ve said before1 that the hardest part of fragile X is the not knowing. No one can tell you what comes next, no one can tell you that you will live happily ever after and I . . . → Read More: IEPs and the fear of the unknown.

Oh my gosh!*

So the other day I posted about the scholarship fund and I was just told that you all are actually donating money for this! That blows my mind and makes me so, so, so thankful for all of you who have stepped up to help make this a reality for families who could not . . . → Read More: Oh my gosh!*

Excitement and disappointment.

In July, in Miami, there is this little shindig planned. I think you may have heard of it, it’s the International Fragile X Conference.

If you are new to the fragile X world, it is pretty much the place to be as a parent of a child with fragile X. It’s five intense days . . . → Read More: Excitement and disappointment.

Now, about those happy stories.

Who needs a few funny Monkey stories? I do, I do! Glad we all agree…

So, the fragile x sense of humor is strong in this child. I’ve said many, many times that he will do anything, anything, to get me to laugh. In fact, when he had the whole dentist visit in February, . . . → Read More: Now, about those happy stories.

Fragile X Syndrome, I’m scared

There are some days when I log in here to write and I see something in my search terms that just sucks the wind right out of my sails. For instance, today I fully intended to come and share some happy, funny little anecdotes about my little Monkey and what is the first thing . . . → Read More: Fragile X Syndrome, I’m scared