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 Once upon a time there was a young girl living far, far away from home. She was lonely and unemployed, depending on another for food and shelter and companionship. That’s an awful lot of pressure to put on one single person, especially one who was often away from home on deployments. She was so . . . → Read More: Besties (or, A Photographic Examination of True Love)  We visited with the oncologist today and it seems that there’s more going on here than we had been told. Copper’s white blood count really impressed her, she hasn’t ever seen it get so high before. He is an overachiever there. His liver and kidney values are a little wonky but she thinks he . . . → Read More: An update on Copper. A few weeks ago we were asked to participate in a video social story for the fragile X clinic here in Boston. The clinic wanted something they can share with new patients to help them with their first clinic visit. It’s quite a good idea, isn’t it? We were not their first choice. While . . . → Read More: A Good Deed.  These days when people ask me how I’m doing, I tell them, “I’m fine.” That’s what we tell people who don’t really want to know and most people, they don’t want to know. They have enough going on in their own lives, they have their own hurts and worries…they don’t really want to be . . . → Read More: I’m not fine but I’ll be OK. If you have had the pleasure of meeting us you know this is, perhaps, an1 understatement. Eric is the one who keeps the house running smoothly and I’m the one who comes up with all these great “ideas” that send the household into chaos. Basically, I’ve got an awesome wife2. As if being spoiled . . . → Read More: My husband deserves a medal. I so desperately want to invite Monkey’s last IEP team leader to visit him at the new school. I want her to see what he is capable of. I want her to consider that perhaps they didn’t handle him1 in the best way possible. I want her to see that she still has things . . . → Read More: He does belong. If you don’t believe me, ask that kid. I never expected to be in a place where I would completely and utterly forget that we had an IEP meeting approaching. After all the battles, I had become accustomed to days or weeks of preparation and fretting before each meeting. We would consult with our advocate, we would research, we would pour over . . . → Read More: Oh, oops! We have an IEP meeting today?  I’ve written about our yearly adventure to find a Christmas tree each year1. It’s one of our favorite Christmas traditions, one of the few traditional Christmas activities we can enjoy just like everyone else. In many ways, Christmas is a season that seems particularly designed to hurt parents of kids with special needs. We . . . → Read More: The Great Christmas Tree Hunt of 2011. Soooo, I have yet another post about the conference…bored yet? It’s that or whine about how much it sucks that Monkey is sick. Again. It’s viral, says the doctor so we just have to wait it out *sigh* Poor kid. Hmmm, looks like I whined about that anyway…so here is your reward! On Saturday . . . → Read More: I’m just here to help. Yesterday I mentioned that sometimes I start to think that, when it comes to fragile x, “I’m all that, a bag of chips and a slice of pumpkin cheesecake.” Something happened at the conference on Saturday that left me feeling completely humbled though. Andy Selinger1 mentioned that there was a newly diagnosed family in . . . → Read More: Not all that, a bag of chips and a slice of pumpkin cheesecake. |
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