I arranged a Rett MNO on Saturday night at our favorite celebratory restaurant, Founding Farmers. I always fail to get a good photo at these events. Even though I consider these ladies practically my sisters, a wave of shyness creeps over me and I can’t bear to stop the conversation to get everyone to pose for a good photo. We had 10 moms, a good turnout (an an extra baby and husband, but we are neither ageist nor sexist). I used to do these every quarter, but it’s been over a year since we’ve gotten together. Our girls are doing well and no one was holding a new, new diagnosis, so even though we talked about seizure (medication and weekly ER visits via school), puberty, clinical trials, scoliosis and g-tube surgeries and various Rett charity gossip, the tone was light and we laughed a lot.
At one point during the evening, I realized that I was the only one who had not procured Edda a Tobii device. This is a computer eye-gaze system that Edda could use to make choices on a screen just by looking at what she wants. All the other girls seemed to be using one (maybe not so diligently at home, but at least school was pulling the huge device out of the computer bag once a day) and folks have found success recognizing sight words or choosing songs or playing games. Maybe I’ve become a little too lax in my parenting duties. I’ve had to let go of so many (OK, maybe all) of my original hopes and dreams for Edda that maybe I’ve slid too far in the the other direction, content to just stay where we are in my little cloud of denial. It’s not only Edda, but I’ve also done this with Vince. One of the reasons that Vince didn’t do his summer packet was because I looked on the web site and saw 5 different math packets – “Math 6” “Math 7” “IB Math” “Algebra” “Geometry”. I had no idea which class he was in. I guess I could cross out “Math 6” because he’s going into 7th grade and no one emailed me that he was failing math, but the other choices rendered me confused and, not only was I confused, but I had no idea the ranking of the math classes. If my younger self could look at my self now, she would be utterly aghast at my okayness of having one child who is illiterate and a second child who I can not accurately place his level of math competency. Maybe I should reassess my priorities.
To round out our Rett-centric Labor Day weekend, we gave our WIKE to Alice. Jeremy went on a garage cleaning frenzy this weekend and this WIKE is really hard for Edda to use now because it’s so low to the ground and Edda is a giant and hard to convince to bend at the waist and knees. Although the trip was to give the WIKE away, Jeremy really wanted to touch base with Kichul (his IT guru) to figure out why we are getting a weak wifi signal in our garage and at Edda’s bed.
Rett siblings:
I’m starting nursing school up again tomorrow. Because of a curriculum kerfuffle, I’m taking 12 credits this term and for all of you keeping track, that is a full time load which is something I tried very, very hard to avoid. But sometimes you can’t avoid kerfuffles. Whatever. I’m already letting go of a lot of expectations and settling comfortably into my little cloud of denial.