Month: November 2012

Emma, a friend of Edda’s and mine, passed away from complications due to Rett Syndrome this past weekend. Just a few hours before Emma passed away, I was having dinner with her mom and a bunch of other “Rett” moms, scarfing down margaritas and sweet potato french fries and laughing/commiserating/complaining as all girl-fests are apt to turn into. This week, we are all heartbroken.

Overlapping with this intense sorrow over the end of a life, there is also great happiness as life begins anew for Bert – my newest friend on the planet Earth. It seems impossible that I hold both feelings in my hand this week.

I was lucky enough to take a walk mid-day yesterday with the doggies. I like to go tromping through the small patch of woods near our house. Nothing makes me feel a little better than being outside. Maxi likes it too.

The kids are having half days at school yesterday and today to fit in parent teacher conferences. I think this means that there will be no full weeks of school in the month of November – we lost two days to Hurricane Sandy, two days to the election, 2 half days for parent/teacher conferences and next week will be Thanksgiving.

Edda’s teacher this year is so upbeat, so energetic, so on top of everything – it makes me kind of want to cry with relief. And also after such a moody summer with Edda, it’s good to hear that she is awake and happy and participating in her own way. The teacher’s big challenge this year is to do the Alternative-MSA for Edda. MSA is the standard testing that all the kids in the county have to take to determine their skill levels in reading and writing – I think it is given every year from 3-8th grade (I know!  Overkill – even for the typical kids.)  She is to be tested on grade level material – modified especially for her. I can’t decide if it is a complete waste of time that the test is modified so much that it is meaningless or if it is a good thing for Edda and her classmates. With Edda’s enthusiastic teacher and her can-do attitude, I can only see the upside for Edda and her amigos.

Vince is doing just fine – writing is still a big weakness, not doing more than the bare minimum is also a weakness, but he’s interested in reading, in participating, and eager to be at school. All good things. And last night, he learned some first aid at the den meeting at cub scouts. They had some pictures of people with frostbite and somehow the photo ended up in front of him and at some point, he was so freaked out that he had to find me in the parents section to snuggle. I flipped the photo over.

Love holds us all together – everyday! xoxo

It’s the beginning of the long Veteran’s Day weekend – Vince is out with his scout troop and I’m about to step into the shower with Edda. Edda hasn’t had a shower in a few days and her hair is getting a little greasy. I never understand when fashion magazines tout the advantages of unwashed hair. I wish I could bathe Edda every day – I could have our sitters help us out, but the accessible bathroom is the master bath and I work our bedroom so it is a little awkward to have the sitter in our own private space and also while I am working. I would do it in the evening, but then Edda gets grumpy and it just seems easier to just ease her into bed without tormenting her with a shower. Anyways, it just means that she’s a little bit under bathed. Not too terrible I suppose.

Edda went to a regular 3rd grade classroom for the Halloween party. Her teacher asked if I could come in during to party to help out and dutifully I go every year to help out even though it makes me sad and then a little sadder.

Usually Edda falls asleep:

Then I go rogue with the crafts, (this was suppose to be a scary ghost):

Even though I go and I know it makes me all unhappy, I had a wonderful time with Edda’s teachers and aides, we’ve been there for years and know everyone there pretty well and it is with open hearts that we laugh and cry together.

So many things in life – I both love and hate. For example – running, laundry, my job and ice cream. I also both love and hate Halloween. I love that it’s in the fall and it involves being crafty. I love that there are no gifts to be bought and that the whole neighborhood comes out to meet each other. I hate that it so starkly highlights how Edda really is missing out on so many things.

Last year, Edda and Vince were bacon and eggs and I didn’t really think I could top that this year, especially since Vince really, really wanted to be a bar of chocolate (which I thought was pretty lame). Edda I knew I wanted her to be Waldo from “Where’s Waldo?” and I ordered items from eBay over the past month for her. I kept procrastinating and delaying my starting efforts on Vince’s costume until the last possible moment. I think it all turned out very well – Vince and Edda both got a lot of great comments on their costumes.