Year: 2011

Jeremy reads to Vince at night.  Edda is in the same room and usually she is already asleep.  I pick out the books and even though I am in the bed with Edda, I am usually surfing the web or reading my own book – I don’t usually pay attention to the book that the boys are reading, I just like picking them out for them.  Right now the boys are reading Jacob Have I Loved – which is apparently really weird.  There is stuff in there about eternal damnation (Vince had to ask what exactly that was), a 14 year old girl having a crush on an older man and weird sibling/twin stuff going on.  Jeremy asked where I got the idea that we should book and I said that it was a Newbery Medal winner and that it takes place in MD on the Chesapeake Bay.  What could be better than that?  Anyways – it’s weird.

Poor Edda, she is suffering from chapped skin from mouthing her hand in the winter.  I try and combat it with a slathering of petroleum jelly at night to heal the skin.

I do love under scheduling the kids.  I love it because then we get to do more things as a family or more things with friends and I don’t feel like I’m driving the kids all over the place.  This weekend we had all Saturday free and went walking in the woods near the house.

This was to get us all out of the house – it is really easy for all of us to hunker down in front of respective electronic screens and tune out the rest of the world.  But this is more fun for all of us.

Especially for Maxi.  Someone (ahem) dropped her leash and Maxi took the opportunity to flee!   What a crazy dog.  Doesn’t she understand that we are the ones who feed her and give her a warm place to sleep at night.  Took us 20 minutes to catch her!

How long can we ride the bacon wave? Apparently for a long time. This year – in the Raingutter Regatta – Vince crowned his boat “THE B B” aka the bacon boat.

Thanksgiving was wonderful.  I missed my own family (my parents are in China, my brother decided to do other *more exciting* things), but the Martins are good cooks and good fun.  We ate a lot and talked a lot and went to see the Muppets after the turkey dinner!  I have to admit we had never taken Edda to see a full-length feature film in the theater.  I was worried that she would be too loud, but frankly the movie soundtrack was so loud to begin with that it really wasn’t a problem.  She really loved it and (although the movie was a little slow at times) we loved it that she loved it so much.

Here’s her favorite clip 🙂

Jeremy went camping this past weekend. He does not often take leave of us on the weekend, but this was something special. He brought Ruby (but not Maxi who cannot be trusted to come when called) and had a great time. Ruby had a wonderful time tromping through the leaves along the wooded trail, she ate all the discarded apple cores from the boys, got petted by a whole Boy Scout troop and slept at the foot of a sleeping bag.

Jeremy’s been worried about his Achilles heel and how painful it has been just walking around the neighborhood (the picture below shows him icing it after a neighborhood walk). He was worried that maybe he wouldn’t be able to hike in the woods, but for whatever reason, his heel didn’t bother him that day.

I never went through a horse phase when I was growing up. So when I took Edda to hippotherapy this past weekend, I thought I would say hello to some of the horses to see if I could conjure up some sort of affection for these enormous animals.

I think I still don’t like horses.  They are very large.  They look at me suspiciously.  They wonder why I didn’t bring them a carrot.  I don’t really like horses, but I do love horse accessories – all the leather saddles and the boots and this little guy holding a lantern!

Happy 70th Birthday to Mom. Yesterday (Sunday), a day before her birthday, we got up at our regular hours and took a walk along the beach just across our apartment. Afternoon, we went to the the market to buy roses and several ingredients for her birthday cake. In the evening, we made her birthday cake together. At night, we chatted a lot, while reflecting upon on our life, our encounters and endless memories – both bad and good.

Edda was a turkey in the school play last week.  I mentioned this to a good friend of mine and she said that she hoped that Edda wasn’t THE turkey in the play.  Frankly, it hadn’t really crossed my mind that Edda might be the centerpiece of a Thanksgiving feast because a few days before the play,  Edda’s teacher and I were discussing the odds of Edda even being awake for the play and perhaps if Edda was sound asleep at 10 am (which is her regular morning nap time) then maybe she would sit out the play.  Anyways, I was relieved to see the following photos from the school, Edda wide awake – off to the side (of course) –  being a turkey with a thousand other 2nd grade turkeys.  Now you might be wondering what sort of weird Thanksgiving day play offers up a hundred turkeys?  Maybe the turkeys are holding a rebellion for a national holiday centered around putting their own necks on the line?  No.  Apparently it was a debate on whether the national bird should be a turkey or a bald eagle.  (Bald eagles not seen in photo and probably on the other side of the stage). 

Well. Things don’t often go as planned and unfortunately, the drilling rigs were supposed to be done on Tuesday – but today is Friday and they are still here in the backyard.  I have a lovely photo of the work on Monday, nice leaf covered backyard with the sluice from bedrock/water mixture coming from the bore hole.  Since Monday, it had rained and various problems have cropped up – including city permitting issues as well as hitting the aquifer – which has basically turned the backyard into a huge wrestling mud pit.  I actually do not know the details and I’m trying not to worry about the whole thing because I think we are past the point of no return.  We are going to run those loops 250 ft into the ground, by golly, come hell or high water.  Oh, I guess the high water is already here.

On Thursday, we went to Edda’s school to meet with a psychologist/teacher/team to discuss how to “classify” Edda’s disability.  Edda is doing great at her school, this week she went to see the symphony at the Strathmore with all the 2nd graders and enjoyed it and she also was a turkey in the school play on Wed. Basically there were two classification categories to be picking from (as Edda is not blind or deaf or whatever other categories there are) – autism or intellectual disability.  We requested to have her classified under both categories to basically try and encompass more services for Edda going into the future.  I thought we could get it all done at that meeting, but apparently, she has to be assessed and the team has to write up reports and do all this extra stuff to figure out that she is really OK to be in both categories.   Seems like extra work to me, but what do I know.  Nothing (both about psychology and drilling 250 ft into the ground).

I do handle a lot of the school meetings and appointments for the kids, but for these kinds of meetings (which I have done alone before) I asked Jeremy to try and make room in his crazy busy schedule to come home and attend with me.  Even though I know all the teachers and staff want the best for Edda, it is always so hard to hear what Edda can’t do.  And she can’t do a lot.  And I know there is a lot she can do – most importantly love us and be loved by us – but in many ways what she cannot do always weighs heavily on my mind.  It’s always heart wrenching and, you know, I want to cry and really , I want Edda without Rett Syndrome and no amount of school intervention is going to make that come true.  Anyways, thank you to Jeremy for being there for me.

Finally, we returned the eye gaze machine to the rep – I’m glad that we got to trial it for a month.  It really allowed us to see if we would really use it on a day to day basis and the resounding answer is no.  It really is cumbersome to use, it takes up a lot of room on the dining room table and crashes all the time.  Edda did not enjoy using it, we did not enjoy using it, and the teachers did not enjoy using it.  I think it is – by far – the easiest way for Edda to access choices and maybe if it gets cheaper or smaller in the future (think iPad or Kindle small) then we’ll pick it up again – otherwise we are letting it go for now.