If you were me, if you had this most amazing child…this sweet, funny child…this handsome, clever child…what would you do to keep him whole? What would you do to save his voice, his sly sense of humor, his joyous personality? Would you sit quietly while pieces of him slipped away from you? Would you . . . → Read More: What would you do?
Yesterday, Caleb turned 9. He had a party at school to celebrate and he loved it. Yesterday, I was looking at pictures of my smiling happy boy with his friends. Yesterday, for the first time, I didn’t meet one of his birthdays with a feeling of dread. Yesterday, I was not scared that . . . → Read More: Today, we start again.
Dude. Are you aware that you are 9? NINE! I’m not going to whine about how fast the time is going because you keep showing me how awesome you are becoming with every passing day. I just can’t get enough. Every time I turn around you’re doing something new and amazing. Something that . . . → Read More: Happy birthday, dude!
Thanks to the support and wisdom of the fragile X family I’ve gained, I gathered up my inner Piglet in my arms and, in that quiet voice moms everywhere have perfected, told him to just suck it the f*ck up right now or so help me1, and took Caleb to the circus. I was prepared . . . → Read More: Inchstones.
Love is flowers (the same flowers I carried on my wedding day), my son writing Mom (even if he started with Mooo), my husband’s delusions (I suppose I could be the best wife ever but that really makes me wonder about the rest of you) and cinnamon buns (from Pillsbury, if you . . . → Read More: Love is…
Yesterday I mentioned this sleep app called “Sleep Cycle” that we are going to use to track Caleb’s sleep. At one point I said…
This one doesn’t look too bad
Ohohohoho! Did any of you laugh wildly when you read that and thought….”NOW YOU’VE DONE IT!”?? No?
I didn’t, I was too busy being . . . → Read More: I knew better.
Eric and I had an interesting IEP meeting yesterday. We are still having meetings every 4-6 (mostly 6) weeks, per his IEP, even though I’m not sure we need it now. Things have been going so smoothly with his team. We love his teacher, the aid, the specialists and the school. LOVE them! . . . → Read More: All is still not exactly perfect.
Three weeks ago1, I wrote about our chance to take fragile X awareness onto the field at Fenway Park. You can see story here (Today.) I am happy to report that all went well and Caleb went onto the field as hoped!
He needed a little extra love to get there…
But he . . . → Read More: Wrapping up some loosish ends…
I’ve had two more nights of weird and scary dreams, clearly they’re anxiety induced…in every single one someone is trying to hurt or kill me. Awesome. I told Eric that I blame the decision to run…clearly, running was a bad idea! Then my BFF had to go and point out that maybe they’re . . . → Read More: It’s still pretty ugly up in there.