Sometimes I get the best smile from Edda. I’m not sure what I did to deserve this one, but it warms my heart!
One of the best things about having a smart phone when you travel is being able to pinpoint the best restaurants in town. We found ourselves in Farmington, NM (tiny town!) and found this lovely pizza joint, Three Rivers Pizza. Yum!
We traveled throughout the southwest with Jeremy’s mom, Katherine. As a result, we had to find motel rooms that could accommodate 3 adults and 2 children. Jeremy also wanted to find places to stay that had pools so that Edda could enjoy the pool every day. Jeremy and I went into the pool everyday with the kids, at the end of this trip, Jeremy declared that he was done with pools this summer (which I think he indeed is).
We are back from our trip to the Southwest. I want to give ourselves a huge pat on the back for our traveling excursions. It is not easy to travel with the limitations that Edda places on our speed and dexterity, but we did it. It’s pretty much true, everywhere we go, people look at us with curiosity and concern and we are never sure if Edda is going to enjoy the Rim Walk of the Grand Canyon (which we drove eleventy hours to get to) and we don’t know if Edda is going to have a poopy diaper in the most inconvenient of places (I think it really is during the airplane flight), but we do it! And for the most part, it was really lovely. And I’m so proud of ourselves, especially Edda, who is such a trooper and only insisted a few times that she would rather be home watching Hi-5. Here’s Edda squeezing through the little doors in Chaco Canyon!
In a few weeks, the kids are going to camp where lunch has to be both vegetarian and nut free. I’m trying to think of things that the kids will like to eat and are easy to make and fit the requirements of the camp. This week I’m experimenting with avocado rolls. Both Vince and Edda like to eat this – not too hard to make and if I make enough, it is filling. The first time I made the rolls, I did not let the rice cool enough, so I basically melted the seaweed wrap. The second attempt is what you see above. Not to bad!
So Vince and Edda are out of school. Five minutes after school let out, they both proclaimed their intense boredom – Vince by actually doing the classic, “I’m so bored” and Edda by following me around the kitchen trying to bite me. I have planned a whole summer of FUN for both of them and in return I get time during the day to work in order to pay for their expensive-out-of-the-house FUN! This is so different from my own childhood – as soon as I was old enough to be left alone, the only thing I did was watch VCR recorded prime time TV shows in the morning, followed by eating Stouffer’s french bread pizza, followed by Days of Our Lives and General Hospital. Ah, now that is how to spend a summer!
In a bizarre coincidence – both my husband and my go-to girlfriend are traveling this week, so the amount of talking that I’m doing on a daily basis has dropped to an all time low. My conversations these days are “I’m so bored!” followed by “Go read a book!” followed by “I don’t want to and I’m so bored!” Since I haven’t been talking very much, I tend to brood.
I’m struggling with the end of the school year and acknowledging the fact that Edda really didn’t make much progress. No discernible academic progress, no discernible progress in her physical capabilities. And really, I don’t think I will see any great progress in the future. It’s not that I think the school system is shirking its duties, I have nothing but respect for Edda’s teachers – years of teaching the most severely disabled kids both in inclusion and segregated classroom settings, they have seen the whole range of kiddos with all sorts of disabilities and it is hard work – coaxing progress from these kids with damaged brains and bodies is a thankless task, it takes so long and the gains are so small.
And I’m struggling to come to grips with the realization that the lack of progress is OK. Frankly, I trying to convince myself that the fact that we are not going backwards is a win in itself. Hey we are doing GREAT! It’s just so terrible for me to think that at age 8, perhaps Edda is in the prime of her life – and maybe the prime of her life was actually 20 pounds ago when we could actually carry her and maneuver her around hiking trails and such things and she could experience more things. I definitely feel like her growth (really, I know a blessing too!) has really limited the things we can show her and do with her. And although I think in general Edda is content and happy, as she gets older, I feel like she is getting less and less happy. We have these little family “jokes” that used to get her to laugh so easily – mainly chicken noises (which I have done in an elevator full of people) – but we try those old jokes and she doesn’t even crack a smile these days.
Nothing better on a hot day than a garden hose.
I thought that it would be fun to go to the Air and Space Museum on Tuesday night to see the Venus transit. A once-in-a-lifetime occurrence, and it was suppose to be a beautiful day and with school ending and the kids a little bit at a loss of what to do – I wanted to take them downtown to see this and maybe take them to some exciting little cheap eats ethnic restaurant. But, as you can see, it was a cloudy day and as it turned out, we ended up eating at the museum’s McDonald’s which Vince and Edda were thrilled by. The grown-ups less so about the burger and fries, but it was nice to get out of the house.
Love all these folks 🙂 my local Rett Syndrome family. They keep me sane and smiling. I need a wider lens on my camera!