Last night was our monthly FXMNO (Fragile X Moms’ Night Out) event. When we started these a few years ago there was just a small handful of us that would get together whenever we could coordinate schedules. We quickly realized that there was something so healing about sitting down over a glass of wine . . . → Read More: To the lady at Papa Razzi in Framingham last night…
Bonnie over at The Fragile X Files shared an article from the Seattle Times, The mining of rare diseases, and her thoughts about it. I have so many thoughts right now that I am having trouble teasing them apart. I guess I can start here, with this from her blog post:
But we, the . . . → Read More: Fragile X and fragile hope.
Earlier this week, John Robison resigned his roles on the Science and Treatment Boards of Autism Speaks. You can read the full resignation letter here.
John has autism. One particular paragraph in the letter grabbed me, I’ve read it over and over. In stray moments since Wednesday I’ve stopped to think about it, and . . . → Read More: Time for a new story?
Over the weekend, Eric and I were in Connecticut for the 6th Annual Fragile X Conference sponsored by The Fragile X Society of Connecticut. While we were selling t-shirts, hugging new friends and old and learning a ton…this happened.
And this morning we watched bits of Charlie Brown, The Grinch and Frosty the . . . → Read More: And so it begins…
Every November 1st I say that I won’t do this again and every October my brain short circuits and my need to give Caleb all the same experiences as other kids kicks in. I start plotting…just a *little* something costume-ish without him being aware that it’s a costume…surely that will work! And every single . . . → Read More: There was no Halloween miracle.
It’s been more than a month since Grampy passed. The house feels so empty without him…and I can’t seem to write anything else while this is here in my draft folder. Caleb talks about him every single day.
About 10 1/2 years ago, Eric and I moved in together…into a two family . . . → Read More: Grampy Travers
I thought that by sharing my new school year resolutions, I would be more accountable and more likely to stick to them…let’s see…
Bedtime – Caleb has one and, now, so do I. I need to get at least 6-7 hours of sleep and I need to get up at 5:45/6:00. I need the . . . → Read More: Being accountable.
Yesterday, Caleb’s teacher shared some photos with us of Caleb enjoying science class at school. Eric brought his phone to me, started the slideshow and my initial smile turned to sobs…mascara running down my face…can’t catch my breath…ache in my chest…sobs. He was absolutely mystified with my reaction because the photos…here look…
The photos . . . → Read More: Two perspectives.
We have already had a busy morning of learning! What have we learned?
If you use too much cooking spray on the griddle when pretending to warm your pizza, it will make the crust soggy and gross. How much cooking spray is too much? Somewhere between ANY (Money’s opinion) and most of a can . . . → Read More: Early morning experiments.
I’m not going to say it out loud yet but…do you see what I see?
It’s back!! I think it’s too soon for it to be the Celexa but it’s been ages since we saw this last. I missed it . . . → Read More: Look into his eyes….