Author: Doris

Vince is learning to cook – the sous chef of Jeremy.  Spinach no less.  Vince will actually eat the spinach.  Often Vince cooks and then refuses to eat the food that he cooks. 

A few weeks ago, Vince accidentally broke a window in the house by throwing something he wasn’t suppose to throw around the house.  I had just come back from the glass place and told him that it was going to be more than $200 to repair the damage.  He acknowledged my comment, but then instead of apologizing or offering to pay for some of the damage from his allowance, he immediately asked if he could buy a new deck of Magic cards.  I told him that one of the life skills that one needs to learn is that you have to have your mom in a good mood before you ask for something.  So in order to get me in a “good mood” he started flitting about, feeding Edda, clearing plates and laying the charm on thick. 

I have never had a dog with hair instead of fur. With Boba’s parent’s blessing, I went ahead and groomed Boba myself. I thought I’d save them fifty bucks or so. Now I understand why most dogs go to the groomer. Boba now looks a little like a large rat and I got our deck covered in little poodle curls.

 Before:

During:
 

After:

Emy was in town for a John Cage festival and we attended a concert last night at the Freer Gallery. Margaret Leng Tan played a piece that involved singing into the open part of the grand piano. Apparently Ms. Tan is also known for being a virtuoso at the toy piano – which I find very interesting.

So my poison ivy is spreading and I’m turning into one big itch-ball. I think I even have some spots in my arm pit. The spot between my fingers is particularly annoying. I think I will be less cavalier next time going into the pit of our backyard to do a little “cleaning up”.

We spent today putting in Jeremy’s birthday garbage disposal. It took us only like 6 hours and 2 trips to Home Depot, but we managed.

Jeremy turned 44 today. Happy birthday sweetie. I hope you like your new garbage disposal!

We have enough people and dogs in the house to give each person their own Snow White and the Seven Dwarfs nickname. I would like to be Grumpy. Isn’t that a good nickname for me? Grumpy Doris.

When I get grumpy, Jeremy (who is Doc), hauls us all out for a walk around the block.

It usually is pretty successful in getting me less grumpy – although not enough to change my name from Grumpy.  OK, maybe I could go from Grumpy to Sleepy.

I have been doing some gardening in the back yard and have gotten a little bit of poison ivy. This also makes me grumpy.

But Maxi could also be grumpy because it appears that Boba, the blink cockapoo, is alpha in the house. Maxi spends a bunch of time looking longingly at the doggie bone that Boba has in his mouth.  Maxi thinks, “Hey, that used to be my bone.  And now it’s not.  I’m not sure I like this new situation.”

I often think that our family has our own version of the first law of thermodynamics. The first law talks about the how the amount of energy in a closed system cannot be created or destroyed – basically if something gets more energy, than something else in the system must be losing energy.

For example, I have run three miles almost every day this summer. In exchange for this awesome triumphant achievement, Jeremy has lost all ability to walk up and down stairs. If Jeremy is really thrilled about something, it is inevitable that I will be down in the dumps.  

In exchange for me giving Vince the awesome-est home haircut ever (not too shabby huh?),

we have sucked out all the good haircut karma out of the house and given Edda the worst haircut ever:

In a good mood, I can call it very French. In a bad mood, it is a little, as my little brother says, like a Romulan.

The haircut is fine – it’ll grow out, hair always does. But now that her hair is totally out of her eyes, I can see that when she is crying for hours, her eyes seem fixed and dilated and she seems more far away than she used to be. Now I can’t remember if her eyes have always been dilated and I’m just imagining these things. When we traveled that last week of August and Edda cried every night in other people’s houses, many of our hosts (who we have not seen in over a year) mentioned that either Edda seemed the same to them, or even better and more interactive which is totally not how I feel at all these days and I wonder if I myself am going crazy.  We still haven’t been able to get a fix on her unhappiness which is making everyone stressed out (although as I write this, we are on the 2nd night in a row where I don’t hear any crying, maybe we’ve come out of this 3-month-long episode, keeping my fingers crossed).

We’ve finally got an appointment with her neurologist in mid-October – he recently switched jobs so he’s not taking appointments for 6 weeks while he settles into his new role at Children’s Hospital. I don’t want to see him, I don’t know if this is Edda’s brain just going crazy or what – I’m not sure he will know what to do, I think neurology is often just a shot in the dark with crazy-strong meds.

I have let go of so many “normal” things for Edda and I think that I am at peace with much of it, but the one thing I have held on to is that I knew that she was not suffering and generally a happy, carefree girl.  Isn’t that what we all want for our children?  I knew that this was not always the case with Rett girls, so I was grateful that we had a happy Edda, so the last three months, I feel like that last little remnant that I hold on to to keep my sanity is slipping away.

I’m quicker to be jealous of friends who can just drop kids off at pools, friends houses, etc and not worry about changing facilities, accessibility or uncontrollable crying.  I know I’m lucky in many ways, and usually I can focus on the many things that I do have.