Month: October 2011

On Friday, I volunteered at Edda’s school for the Halloween parade/party.  Edda’s special ed class is slightly less (or more?  I can’t really figure that out right now) that 1:1 ratio and they really needed people to come in and help out as the special needs kids are dispersed within the typical classrooms and really need 1:1 attention.  I failed to get Edda’s “real” costume done in time, so I grabbed an old Snow White outfit to pack into her backpack in the morning.  Edda really has a 6th sense about parties – she seems to know when they are coming and instead of being overwhelmed, she often decides that it’s a good time for a nice, long nap.

I did manage to wake her up to walk the whole parade route (which was up an incredible number of stairs and across a grassy knoll and down a long, long ramp), but she was grumpy and really wanted to be sleeping soundly.  This parade always makes me feel a little grouchy.  I want Edda to like more “fun” things more, but you know – Edda has different priorities and marching around in a Halloween parade doesn’t seem like one of her top priorities.

Back in the classroom, there were several crafts we (I guess I should say I) mustered through, mainly with Edda sleeping soundly against my shoulder.  I really wanted this Halloween mug that I could decorate myself, but I didn’t want to be hogging the orange and black markers from a bunch of 2nd graders, so I made mine Christmas colors instead.

I took the kids to a new pumpkin patch last Friday – the kids had off school (apparently the teachers were headed to Ocean City for the annual Maryland Teacher’s Association meeting) and it was a beautiful day!  We went to Summer’s Farm in Fredrick, MD which is not a farm I’ve been to before, but I really wanted to do a corn maze and this seemed like the closest one with a good size maze. Vince had a play date and neither boy wanted to go to the corn maze, they all wanted to stay inside and play video games, but being the cruel, uncompromising mother that I am, I dragged us all out to the un-fun corn maze which was amazingly fun 5 minutes after we pulled into the parking lot.  Edda had a great time – laughed and was awake, which is ringing endorsement from her.  I forgot to pack her off-roading wheelchair, so it was a bit of a comedy routine with the boys running ahead and then me and Edda and Denise chasing them and then calling them back to help Edda get unstuck from the muddy patches.  As I said, a good time.

Vince wallowed in a huge pile of corn. 

And everyone picked a pumpkin and the rule was that they had to be able to carry it to the car because there was no way I was going to be hauling anyone’s pumpkin anywhere.  I think Vince ended up rolling his to the car.

Our desktop computer died last week and Jeremy went inside to operate on its guts. I started out this marriage handier than Jeremy, but now I suspect he might be handier than I. In the past two days, Jeremy has not only fixed the computer, but he has also fixed our heater by spending $11.94 on a fuse at Home Depot. I had spent about an hour trying to figure out what was wrong with the damn heater and I think it took Jeremy only 15 minutes to figure it out. I defend myself with the fact that I don’t understand anything about electricity. I am suspicious of anything I can’t see and feel. Also the juxtaposition of electricity and magnetism always throws me for a loop.

Jeremy might have spent an extra 5 bucks or so to buy a Deskstar hard drive over the absolutely cheapest model. I used to make these hard drives for IBM, before Hitachi bought them out – was a process engineer for the HSA, the head stack assembly, the part which swings back and forth across the disks to read the data. When I was making them, they retailed for more than $800 for much less storage, but this one was $45? maybe $50?
 

The backup restore got hung up a little – it told us that it would finish in 70 years or so!

I kind of want to do this:

 

I might have sent Vince to school on picture day with his hair sticking straight up.

Beautiful weather for the stroll on Sunday – I think our final haul was over $35,000, maybe $40,000. Not too shabby! Here we are strolling, in our crazy-ass t-shirts. This is our 4th stroll and we bought these shirts 3 years ago and Edda is no longer really fitting into hers very well.  Of course, we didn’t get a group photo – somehow we always manage to end the stroll without a picture of all the girls.  Sigh.

I met this beautiful 4-month old cavachon named Amy! I asked (all curious and nosy) if she was housebroken yet and the answer was a resounding NO!

Movie night at the elementary school.  Every year, the elementary school hosts a movie night – they have a huge inflatable screen in the gym and hundreds of kids show up and make their parents sit cross legged on the floor to watch a movie.  This year it was Rio (which amplified my desire to own a talking bird).

Jeremy and Edda stayed long enough to enjoy the pizza dinner and then they skedaddled back home which was not the original plan.  Edda was already falling asleep and Jeremy can’t sit on the floor and -also- we thought we had set up camp on the “edge” of the viewing area so that our lawn chair and wheelchair weren’t blocking anyone’s sight line.  But after a while it became clear that our chairs were basically in the middle of the gym.  Oh well.  Anyways, I kind of wish I was the one to leave because the noise from the kids was so loud, I could never hear the movie and they never dimmed the lights 100% and so I couldn’t sleep either.    Vince had a great time though as can be seen from the photo above.  The first thing I think about when I see that photo of the boys is “OMG!  THE LICE ARE JUMPING FROM HEAD TO HEAD!”

It has been Rett Syndrome awareness month and I’m pooped. We went to three events within a three-week period and I’m emotionally exhausted from all this fundraising and general aware-ness raising. I do the fundraising because I love Edda. However, I’m a cynic and general pessimist and I no longer believe that a cure is around the corner.   It is too difficult for me to keep on hoping that Edda might someday be miraculously be able to talk, feed herself, go to college, get married. These dreams for Edda are no longer part of my world. My dreams for Edda are simpler these days – is she loved by friends and family? is she exposed to new experiences? is she making the most of what she is able to do? how am I going to get her into those fashionable skinny jeans? The stroll-a-thon (which was the last of the three events) happened yesterday and I’m glad that the stroll slid into the hours of Sunday night dinner.  I’m glad I got to go from being surrounded by my Rett Syndrome family to my own family.  I’m so glad that Edda got to enjoy the new Ben and Jerry’s flavor, Schweddy Balls. 
 

It was a nice quiet evening (except when everyone started dancing!).  Now if only Jeremy had shaken his booty…

I love my Rett Syndrome family.  Although I could do without Edda’s disability, I do like that I have a name for it and that I’ve connected with families all around the world who share similar struggles.  Today we participated in Blue Sky Girl event – which was an awareness event to let people know about Rett Syndrome.  We bought balloons in blue and yellow – blue for the sky and yellow for the sun.

All around the world, in designated spots with staircases, we were all suppose to climb up the stairs to show what girls with Rett can do.  Here we are at the bottom of the stairs:

And here we all are at the top!

Vince lost a tooth last night. The tooth fairy forgot to come. We were all a little embarrassed at her tardiness.