Author: Doris

To Singapore! Tally Ho!

Vince went on a field trip today. His first one! This is what he has to say about it:

We went to the Discovery Center on a small bus and we go to the army camp to see different kinds of armies and buildings. Won’t you see the Discovery Center with me? You like me and I like you. And something new is happening tomorrow. And I like to go upside-down. Won’t you come and see me upside-down.

So the neurologist told us that Edda’s brain exhibits the classic EEG of Rett Syndrome. Basically her brain is awash in misfiring neurons and crossed electrical pathways. Edda has not shown the clinical signs of seizures so we are not medicating for now. She suspects that the seizures will start when Edda is 5 or 6.

It was kind of a bummer visit with this neurologist. I was not surprised with the news, I was just surprised with her bed side manner. We had been to this neurologist before and I was impressed with her style and her eagerness to help. Perhaps she was just having a bad day (a fight with her husband, an upset stomach, sick kid) , or maybe she just felt bad delivering this news because there was basically nothing for her to do about it.

I was most upset about her phrase “buying time”. That all we can do is just prolong the time that Edda has before her brain turns into mush. Hey, Edda is learning stuff every day and she’s learning to climb up stairs and she’s learning to make choices in what she eats and does. Her brain is making these connections through the massive electrical storm going on inside her head. It’s a tough thing, but she’s doing it her own way.

Anyways, life is terminal. We are all buying time until our brains turn to mush.

Wednesdays are hectic for me. There are two afternoon therapy appointments, so I have a lot of planning to do, a lot of eating on the go and a lot of praying for naps to happen right on schedule.

It puts me on edge. I’m hauling kids around and I’m cranky. I snipe at Vince when he dawdles getting in and out of the car. Edda has been in a two-week long screaming-her-head-off-for-no-apparent-reason phase. It’s really hard to keep yourself together with a two year old screaming into your ear.

Anyways, a therapist was at our house and I took Vince to the local McDonald’s so we could split some fries. (yummy!) Vince was running all over the place. I finally sat him down in front of his fries and I was enjoying my first relaxing moment of the day. It lasted about 2 seconds.

There were 3 girls (maybe 13 years old) sitting across from us and they were having a grand ol’ time. They were pelting French fries at each other. Now I’m no party pooper. A few thrown fries are OK. But then it kept going on and on and on. Fries were flying everywhere. It was getting into a baby’s pram, it was threatening schoolbooks, it was making a huge pile on the floor. The McDonald’s was crowded. No one was making them stop, everyone was annoyed.

I finally yelled at them to stop. The kids stopped promptly and then picked up their bags and left. I would have never done it in the US. I’m sure US teenagers would have flipped me the bird and yelled some obscenity.

I used to think that I would never yell at my kids in a public place. Today I’ve sunk to a new low. I’ve yelled at other people’s kids in public place. Sheeze. Never say never.

I started taking antidepressants a few months ago when it was clear that my regular and unmedicated brain chemistry was resulting in many immobilizing boughts of irrational and obsessive thoughts. I know I have a tendency to be a depressive person and this whole thing with Edda was starting to slide me down into a dark hole. Needless to say, my abilities to steer my half of the Martin-Lee ship were diminishing quickly.

Now that I’ve been on them for a while, I feel very even keeled on most days – capable of making prudent decisions for my family and even enjoying myself in the process. Woo hoo! Thank goodness someone invented SSRIs! Yeah for science!

Anyways, I go to a psychatrist in Singapore to get my prescription and I saw him for the first time a few months ago and I didn’t have either kid with me and I mumbled something about Edda being developmentally delayed, but I don’t think he really heard me. I didn’t have Edda’s Rett diagnosis at the time. Anyhow, he sized me up as a directionless housewife whose husband travels a lot and the kids/cleaning/cooking are being taken care of by household help and gave me a few months of pills.

When my pills were starting to run out, I went to see him again. Here’s how the conversation went:

Psychiatrist: So you are looking good!

Me: Thanks! I feel good too.

P: So are you interested in doing some volunteer work? I can put you in touch with some organizations?

M: (thinking, huh? but always optimistic that I can squeeze some volunteer work into my schedule) Umm. Sure, are there any you recommend?

(insert 5 minute talk about volunteering in Singapore)

P: So are you sleeping well?

M: Well, I would be sleeping better if I didn’t have any kids.

P: (looking at his records) Your kids are 4 and 2, they should be sleeping well by now.

M: Oh, my daughter has Rett Syndrome, so she doesn’t sleep that well.

P: (blink, blink) Oh, that’s very rare.

M: Well, not in my house.

P: With the hands (he flaps his hands) and the autism?

M: Yes…

P: I’m a child psycologist and I’ve only seen one other case, you know it’s a life long affliction?

M: (!!) Yes, I know! Why do you think I need antidepressants?!?

P: How many pills do you need?

He told me to forget about the volunteering.

Grandpa brought back Vince’s gift to Grandmom. I like it.

Tomorrow Edda goes back to school! Hooray for me!

We had Mathilda and Julia over today. Four hours of insane playdate. Vince and Mathilda had a great time.

Edda did well also, following the kids around, being close to them and being interested. She also was a bit agitated. There were screaming sessions, but I think no one was too freaked out or anything.

What’s the scoop on Landis from your personal sources?