Author: Doris

Clinicals start next week.  Met my clinical instructor today.  I’ll be on a “step-down” floor which is between an ICU and a med-surg floor.  The nurse to patient ratio is 1:4.  My instructor said that the hardest part is to get comfortable with touching a patient.  When I’m a patient, I always expect doctors and nurses to touch me and invade my personal space and I think nothing of it.  Last term, when we had actors be our patients, I realized that it’s a weird feeling to be invited into the personal space of a stranger.  I suppose I’ll get used to it.

Vince has been grounded for the past two days.  Labor Day night, he left the house on foot intending to see if any of his pals were home.  I reminded him to bring his cell phone with him and I gave him two instructions: 1. Text us to let us know where you are.  2. Come home at 6 for dinner.  Neither of these things happened which resulted me texting the whole neighborhood mom network and I still couldn’t find him.  Jeremy was about to get into the car to scan the neighborhood when he came home almost an hour late.

So he’s grounded for a few days.  It involves only one punishment, no screen time.  Without a little glowing screen, Vince is scrambling around trying to find something to do.  He talks to us more.  He marinates chicken and cooks us dinner.  He reads a book.  It’s nice.

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Jeremy is doing an experiment.  He’s fasting for three consecutive days to throw his metabolic pathways into new, uncharted territory.  Jeremy’s been fasting once or twice a week (not in a row) for over a year now, it’s how he lost more than 40 pounds.  He did gain a few pounds over the summer and he’s always been interested in a longer fast, so this is the week to try it out.  I guess I shouldn’t be too freaked out about it, it’s not any more crazy than the 7 day juice cleanse that so many people like to do.  Today is Wed?  So he hasn’t eaten anything since Monday night.  He reports that the 2nd day isn’t so bad – he hardly notices.

I arranged a Rett MNO on Saturday night at our favorite celebratory restaurant, Founding Farmers.  I always fail to get a good photo at these events.  Even though I consider these ladies practically my sisters, a wave of shyness creeps over me and I can’t bear to stop the conversation to get everyone to pose for a good photo.  We had 10 moms, a good turnout (an an extra baby and husband, but we are neither ageist nor sexist).  I used to do these every quarter, but it’s been over a year since we’ve gotten together.  Our girls are doing well and no one was holding a new, new diagnosis, so even though we talked about seizure (medication and weekly ER visits via school), puberty, clinical trials, scoliosis and g-tube surgeries and various Rett charity gossip, the tone was light and we laughed a lot.

At one point during the evening, I realized that I was the only one who had not procured Edda a Tobii device.  This is a computer eye-gaze system that Edda could use to make choices on a screen just by looking at what she wants.  All the other girls seemed to be using one (maybe not so diligently at home, but at least school was pulling the huge device out of the computer bag once a day) and folks have found success recognizing sight words or choosing songs or playing games.  Maybe I’ve become a little too lax in my parenting duties.  I’ve had to let go of so many (OK, maybe all) of my original hopes and dreams for Edda that maybe I’ve slid too far in the the other direction, content to just stay where we are in my little cloud of denial.  It’s not only Edda, but I’ve also done this with Vince.  One of the reasons that Vince didn’t do his summer packet was because I looked on the web site and saw 5 different math packets – “Math 6” “Math 7” “IB Math” “Algebra” “Geometry”.  I had no idea which class he was in.  I guess I could cross out “Math 6” because he’s going into 7th grade and no one emailed me that he was failing math, but the other choices rendered me confused and, not only was I confused, but I had no idea the ranking of the math classes.  If my younger self could look at my self now, she would be utterly aghast at my okayness of having one child who is illiterate and a second child who I can not accurately place his level of math competency.  Maybe I should reassess my priorities.

To round out our Rett-centric Labor Day weekend, we gave our WIKE to Alice.  Jeremy went on a garage cleaning frenzy this weekend and this WIKE is really hard for Edda to use now because it’s so low to the ground and Edda is a giant and hard to convince to bend at the waist and knees.  Although the trip was to give the WIKE away, Jeremy really wanted to touch base with Kichul (his IT guru) to figure out why we are getting a weak wifi signal in our garage and at Edda’s bed.

Rett siblings:

I’m starting nursing school up again tomorrow.  Because of a curriculum kerfuffle, I’m taking 12 credits this term and for all of you keeping track, that is a full time load which is something I tried very, very hard to avoid.  But sometimes you can’t avoid kerfuffles. Whatever.  I’m already letting go of a lot of expectations and settling comfortably into my little cloud of denial.

Our Volvo, which we bought when Vince was less than a year old, has been dying a slow, expensive death.  Two years ago, the check engine light went on and refused to turn off no matter how much money I gave my mechanic.  Because the check engine light was on, the car could never pass emissions (nor could Nat use it to take her driving test).  But I kept getting extensions on the emissions testing and hoped that one day the check engine light would magically turn off on its own.

Then my mechanic mentioned that if I spent more than $450 on repairs to get the car to pass emissions, then I could get an emissions “waiver”.  After hearing this information, I went with my repair receipts in hand and got my waiver and kept driving the car with the check engine light on – never really “passing” emissions testing.  No matter that Jeremy spends his professional life trying to tighten emissions regulation and get cleaner cars and fuels on the roads so we can all breath cleaner air and stop that small thing – global warming.

Then about two months ago, the muffler/catalytic converter failed and the car sounded like a Harley motorcycle.  It would have been $1500 to repair with my mechanic cautioning that it might be another $500 on top of that once he got it all apart and could see the guts.  It was so loud, our neighbors thought we had converted the car to diesel.  Now I could smell that the car was spewing exhaust – a “high emitter” in the parlance of car regulation.

OK, now it was truly embarrassing I was driving this broken, exhaust spewing car around.  Finally, we traded the car in this weekend for a Honda Civic hybrid.  It’s very quiet and does not smell like exhaust and the check engine light has not yet turned on.  We drove a Civic before we had kids and it feels so much the same, we can imagine like we are kids again.  Edda is having a tough time napping in it as she slides over.

Ruth, one of my most faithful and long-time blog readers, visited us a few weeks ago.  I write the blog for our parents and to keep up my photography interest, but I do pick up a few other readers here and there.  I feel badly that I didn’t post her picture on the blog, my only excuse being that it was a rushed and hurried and somewhat somber visit.  So I am trying to make amends by showing pictures of the squid ink spaghetti she brought all the way from LA for us.  We ate it for our anniversary dinner – thank you, it was delicious (Vince and a pal of his even tried it and liked it!) and I’m sure the 16th anniversary is the “pasta” anniversary, right?

Or else it’s the “beer” anniversary.

Jeremy fell (again) on a trail bike ride this past Sunday.  Again, the wounds seemed superficial – a bruised spot below the rib, a scrape on the inner right ankle where his foot slipped from the pedal and hit the exposed skin.  He did calisthenics on Monday without problem.  On Tuesday, he decided to bike to work.  It’s about a 20 mile ride and he left at 6:30 am.  The ride was uneventful and not painful; he was having fun and going fast.  Then I got a text from him at 11am saying that the bike ride was not such a good idea.  His ankle was swollen and it hurt to even walk.  The Tuesday ride to work must have aggravated something that he had more deeply injured on Sunday. He’s been downing ibuprofen and icing it.  Poor guy, he’s a bundle of injuries right now.

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Today is our 16th wedding anniversary.  It’s been a long time.  So much happens in 16 years, lots of good stuff.  Lots of bad stuff.  Mostly just regular stuff.  I got married when I was 25 and, of course, I just didn’t really know what I was getting myself into.  The trick to the whole thing is to think that you are the lucky one in the relationship.  That (thank god!) you found someone to put up with your shit with humor and laughter and will gently call you out on the crap that you do and also support you when you need the help even when you think you don’t need help.  Jeremy told me this morning that he thinks he’s the lucky one, but trust me on this: I’m the lucky one.

This is what we are dancing to here in the Lee/Martin household.  The first day of school was yesterday and it wasn’t all about that bass, it was all about the shoes.  Middle school is about the shoes – forget algebra and no-vegetable lunches, everyone just wants basketball shoes.  While we were in Portland, we did make it to the Nike outlet where Vince and got a pair of basketball shoes.  Donald told us the most incredible Nike store is the employee store where all the merchandise is the latest/greatest with a sweet 50% discount to go along with it, but we didn’t get to go to the mecca of basketball shoes because that ship has sailed.

Going to school was fine and exciting (violin strapped to the back, now that’s cool).

Coming home was another story.  Vince was surprised and overwhelmed with the amount of work and also upset that the summer math and reading packets were actually due on the first day of school.   Hmmm…it’s always a tough wake up call for Vince – the actual working and studying part of school.  But today was much better, homework done early and cheerfully and he’s looking forward to working in the school store in the mornings.

Edda was so excited Sunday night when we talked about school the next day.  She smiled when I told her that Ms. Carmen was going to pick her up in the morning and that Ms. Maureen would be thrilled to see her after a long summer away.

Nat put her hair in a beautiful first-day-of-school braid.

Edda had a few visitors last week right after we got home from vacation.  Eliana (au pair #2) came to visit with her mother.  I got to tell Eliana’s mom, in person (although not in Spanish), how much we loved having Eliana take care of the kids.  Eliana got to show her mom her room (thank you Nat for letting them into your room). They were headed to the beach right after their visit.  Since Eliana visited us so frequently after she moved back home and now lives in the US, she is the au pair that has really gotten to see the kids grow up.  She started working for us when Edda started kindergarten and Edda’s starting 5th grade tomorrow – her last year of elementary school.

Izzy also came by the same day to visit Edda.  Izzy was Edda’s JCC inclusion counselor #3 and she managed to squeeze in a visit with us right before she headed back to Indiana U.  Edda relaxed and fell asleep in her arms.  So sweet.