20th anniversary today!  We had to look at the wedding invitation to remember if we made people get there at 10am, or at the more reasonable 11am.  (Thank goodness we made it 11am)  It was about 103 degrees at our non-air-conditioned wedding in Pasadena (though Caltech had found enough money to install AC in Dabney Garden now) and Jeremy’s hair was plastered to his forehead in almost all the photos and therefore, it was fitting that it was incredibly hot today as well. We were suppose to go away somewhere for a few days, but we couldn’t manage that, so instead we snagged a 5pm slot at Pineapple and Pearls at the bar.  P&P is a new-generation restaurant where you pay in full including tax & tip (like a ticket to a performance) before you ever set foot in building.  So I paid 1/2 at the time I made the reservation and I got charged the 2nd half this morning.  And it was very much like a performance – a little silly and incredibly indulgent  (I could only bring myself to spring for the bar seating and not the actual table seating), but perfectly enjoyable.  I ordered the wine pairing with it, and I had 5 different drinks each of which I couldn’t finish, but I had a very excited young gentleman tell me every single detail of every single thing in the drink I was drinking.  Forgetting about the meal, how did I get so lucky with Jeremy?  I’m not sure. It’s still a lot of fun even in our middle-aged-ness, early to bed-ness, fiber-pill-ordering-ness, etc. etc.  Fingers crossed for another fun 20.  or 30.  How much do you think I could reasonably hope for?  I actually secretly desire a whole ‘nuther reincarnated life with Jeremy as a different species.  Squirrel?  Hippo?  Armadillo?  I guess I should look up to see if those animals actually hang out with each other or if they just mate and head their separate ways.  I would for sure be bummed if I’d have to take care of all my baby squirrels by myself without Jeremy’s help.

I’m squinty eyed in this photo.

We said hello to a dog.

We tried out these new battery powered scooters that are popping up around town.

They are surprisingly hard to locate, we went to at least 3 different metro stop locations to find one that was charged and working.

I’m having scheduling issues.  Like – am I going to be at the hospital on Sunday this weekend?  Or Labor day? Or even Wed?  I have no idea.  The Sept schedule isn’t released even now – the 28th of August.  I’m hoping this isn’t how it really is for the foreseeable future.  I’m really hoping that this is because I’m still following someone around and she is very laissez faire regarding her schedule and she doesn’t tell me what she wrote down in July for September  (she’s asks me when we are meeting again next – I’m like Thurs!  I’m seeing you Thurs!  and then she’s like – really? I wondered why I asked to do that…)  This is presenting problems as our 20th wedding anniversary is tomorrow, Jeremy is turning 50 next week, various people have birthday parties in NYC or even just in DC and I can’t make arrangements or say yes or send regrets for anything.  We were suppose to go away for a few days for our anniversary – our caregivers are all encouraging us to go somewhere and do something, but I can’t figure out when I have three days off in a row in either Sept or October.  Jeremy is slightly grumpy that I haven’t pulled something together for his birthday – is it OK to arrange for a party when I can’t attend?  That seems silly, right? 

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I auditioned this dog “Moose” to be a member of the household.  I do like Moose, but I think he’s destined for another family.  Poor guy, he’s getting neutered this week.

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Another reason, besides the birthday party snafu/gridlock/impasse/standstill, that Jeremy is grumpy is because his bike broke earlier this week and he’s been unable to bicycle anywhere.  I’ve been spending time commiserating with him and taking photos of small round parts he can send to the manufacturer for advice / replacement parts.

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I like this particular pair of spotted/dotted socks for Edda.  At the end of the day it seems like she has some weird dermatological ailment.

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Vince joined the rock climbing gym today (it’s right across the street from his high school).  I’m hoping this means I’ll have a climbing partner.

Edda had a good time watching Vince try on some climbing shoes.

My days of the week are all messed up.  I worked at the hospital this weekend – it’s nice to work weekends because it really is quieter on the unit and I had a chance to figure some stuff out.  I can see more clearly now the structure of the day, it doesn’t seem just a jumble of crap (literally & figuratively) interrupted by random phone calls (well, it still really is a jumble) but before when I just saw chaos, I can see a regular scaffolding of the day from which you can anchor your feet and all things radiate from the anchoring of the day.  I can see how my preceptor structures her day and I can see how I want to do things differently.  I like semi-controlled chaos, it’ll be fine.  I gave someone a their daily HIV drug cocktail – they were in for a completely different reason – but when I held those pills in my hand, I thought of all those science hours spent researching – a true miracle! 

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Vince and Edda in Edda’s new hospital bed.  Edda is like, crap! I have no more room.

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Even though it’s nice on the unit on the weekend, it’s hard to miss weekend activities with the family.  Ning’s baby shower was this weekend and we encouraged them to use the upstairs and Jeremy and Vince played all the baby shower games like blow up a balloon so that you are the same size as Ning is right now.  Of course, Ning is a tiny person and I think both Vince and Jeremy have bigger girths even without the balloon but they played along.

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I made a shrimp, noodle, pea, garlic & butter dinner tonight.  We tried to twirl the noodles to make it all fancy. 

Vince who once told me (when I suggested that he might think about going to a liberal arts college) that he hates reading books needs to read a book this summer for his English class.  The suggested list from school included: Unbroken, The Omnivore’s Dilemma, Stiff, Salt, Nickeled and Dimed, but it also said if you didn’t like any of the books, you could choose any book from the NYT non-fiction best seller list.  Vince chose Unbroken, a selection to which I groaned and said it was boring and long (though I did finish it) and that, for a person who doesn’t like to read books, it was a hard one to start off with.  I told him he should read Into Thin Air, a quick, exciting easy to read book.  He resisted.  He said he liked WWII stories.  I told Vickey (my partner in my two-person-book-club) that he chose Unbroken and she groaned (Vickey is not only a polymer person, but she was also thinking about becoming an English major and likes reading and grammar) and I shoved the phone next to Vince’s ear so Vince could hear that Vickey agreed with me that it was long and boring and she said you have the whole running story, but then you have two more stories, the stranded raft story and then the POW story. So long!  Vince said – I’m invested in Unbroken, I’ve already read 8 pages!  I shoved Into Thin Air into his hands and said, try 8 pages of this.  He said, I don’t even care about mountain climbing.  I was still unsatisfied. What book can I give Vince?  This morning I realized I needed to buy him Kitchen Confidential.  I drove to the B&N, so I’d get it even faster than Amazon prime (we are counting down the days until school starts, I didn’t think we could afford even a day without this book) and paid full price and handed it to him and I think this one will take.  I told him it was about restaurants and had curse words in it.  I think he’ll be happy with it.

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Vince made dinner last night.  He followed a recipe from a youtube channel that, when he showed it to me, was mildly offensive if incorporating a fake accent is offensive these days.  Fake accent aside, it was delicious.

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Vince has been wearing his hair like this (he calls it full palm tree):

He’s trying to get a job at the local ice cream parlor, so I insisted he couldn’t go to ask about the job with his hair in full palm.  I had to make it neater (you are working with food!) by brushing it back and making it smooth and even.  Jeremy was like – you are being ridiculous, inflicting on Vince a middle-aged vision of what a man-bun should be.  I said, of course I am.  You can’t get a job with a messy man-bun. 

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Vickey and I finished The Sixth Extinction.  It’s so helpful to have a reading partner because I’m always racing to catch up with her.  She hasn’t managed to lap me yet, but I see it coming in the near future.   After the Sixth Extinction, we were suppose to read Watership Down, but she found out that Bel Canto is going to be released as a movie in the fall with Julianne Moore as the lead and said that she’d try to squeeze in the book while I’m terribly busy, but I loved, loved this book and so I’m trying to catch up and refresh my memory. 

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I’m at the hospital this weekend.  I’m trying to not be scared.  I spend some extra effort managing my energy during my days away from the hospital to slide into the hospital work days refreshed and not stressed.  I’m doing it by really honoring the part-time ness of my primary job and not working extra hours on those days and also taking a few hours off here and there (or even a full day off) to recharge.  I’ve saved up my vacation time like a diligent ant and I’m using them judiciously.

Last night, we had dinner together – just the 4 of us.  I can’t remember the last time this happened.  With Vince away most of the summer and working the fair and me working late too, we haven’t had the “much depends on dinner” dinners.  Even if we do end up with the 4 of us, most of the time there is one of Edda’s caregivers with us, so if it’s us 4, it means it’s usually 5.

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These last couple of weeks of summer (especially this year) is hard for us because Edda usually has nothing scheduled and lots of people are going back to work/school and it’s hard to schedule childcare for Edda.  Vince is also home without strict scheduling and his friends are off around the world on family vacations, so he’s hanging out burning incense he ordered from Urban Outfitters.  (I had to ask him to stop, it smells terrible.  Jeremy said at least it wasn’t patchouli.)

What a fantastic weekend!  Especially since I felt like I snatched it out of the jaws of a weekend work day.  We left the house at about 11:30 and made it to the hotel in Brooklyn at 4:15 and to the party at 5 pm.  Lael and Vikram had already gotten married in a small family ceremony in Michigan around July 4th and this was the reception.  It was held at North Brooklyn Farms and it was threatening to rain a lot and a bit windy, but it only rained when were were all underneath the tent eating dinner and the wind did pick up a small tent covering the caterer’s grill, but it all seemed to settle down during the festivities.  Lael was Jeremy’s coworker at UCS a few years ago before she moved to NYC, and we met up with Rachel another former UCS person.  We had a long discussion about this old Domino sugar factory in the background and whether is was haunted and if we believed in ghosts.

The beautiful bride:

There was glorious square dancing!  We danced so much, it was a lot of fun.  Jeremy was a good sport.  The last big dance, Jeremy and I both found people we didn’t know and danced with them.  This morning, at the out-of-towners brunch, Lael mentioned that she noticed that we had asked other people to dance.  I didn’t think she would have noticed.  I said that I thought that was one of the things to do at weddings – to dance with people you don’t know, but are kind of pre-vetted by your friends.  I might have had 4 drinks, very unusual for me, but they were very modestly poured and I felt light and less self-conscious at the party, but I didn’t wake up with a terrible hangover or anything.

The first dance:

We made a quick stop in Philly on the way home to see Vidya.  The trach is completely out, he’s eating proper food and he’s got his totally motorized wheelchair in place.  I’m so, so impressed with the progress he’s made.  Very happy to see him too.  Now, another two days straight at the hospital.  Wish me luck, I’m going to need it.

OMG, we are headed to Brooklyn this weekend for a wedding and I have never, ever felt so happy to be going on vacation.  We are leaving the kids behind and I’m going to have 36 hours of my own time with my husband.  I had to finagle a Sunday off during hospital orientation which was awkward for me, but whatever, I hate hate asking for special accommodations, but it is what it is.  I’m completely overwhelmed at the hospital each shift, I feel like throwing up as I pull out of the driveway, but I’m trying to be patient with myself and not internalize the complete feeling of incompetence that occupies about 40 hours of my week.  It’s not really all the things I have to learn – like yesterday, I learned to program the PCA pump to dispense dilaudid intravenously and how to hang blood – all of these tasks on their own are fine and completely easy to master, it’s just the sheer volume of tasks that need to be done – I know myself and I have never, ever doubted my ability to learn quickly or my capacity for the tremendous amount of work I am capable of doing, especially in a finite amount of time (like 12 hours), but I can see now, even working at 100% capacity and efficiency, that it just isn’t enough time.  Like for the dilaudid, you have to check vitals every hour for the first four hours.  To hang blood, you have to sit with the patient for the first 15 min to check for any adverse reaction and then take vitals however often and it’s time sensitive, you have only a certain number of hours from leaving the blood bank to infuse the whole unit.  And then both of these tasks you have to have another nurse come into the room and read back all the labels and expiration dates and enter their passwords and crosscheck. So you can imagine if you have 5 or 6 patients, two of which have PCA pumps and one person needs two units of blood on top of all the medications and one person needs to be cleared for surgery and another person needs insulin coverage on their meals and there is just a tremendous amount of documentation that needs to happen, I’m not sure exactly how it’s possible.  Each discharge takes 15-20 minutes, each admission really takes 30 minutes to do it properly and yesterday, we did two of each. I could barely just keep track of who was in which room, let alone what they were in the hospital for.  Also, even if I can control what I do, sometimes you have patients that are completely beside themselves and take up an extra 30 minutes – they need reassurance, calming down, or they just need to yell at someone and apparently that someone is you but in the process, they’ve pull or kinked their IVs which you need access to do the thing you need to do, then you have to call IV therapy to come in with their ultrasound machine to find a good vein.  I think in about 3 weeks, I get to do this all on my own without my preceptor, ack.  It’s going to be like being pushed into a freezing cold pool when you are standing around in street clothes and flip flops drinking a beer.  It’s gonna be terrifying.  Jeremy, as I leave for work, says – you aren’t nervous, you are excited!  lol. 

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Since I’m working every other weekend and we lose that time together and those weekends Jeremy  has Edda in tow for much of the time, he’s trying to figure out his own schedule around mine.  He accrues vacation time more quickly than I do and we don’t go on vacation a lot, so he’s experimenting taking half days or full days off during the week.  So yesterday on Friday, he worked from home half day and was on vacation for half the day and because he cut out the two hour daily commute, he did many of the things I usually do on a normal pre-nursing job weekday; work, get in a mid-day workout, go to the dry cleaners, go get windshield wiper fluid for the car and volunteer for the kids.  Jeremy, with whom I’m going to celebrate 20 years of marriage in a few weeks, still surprises me sometimes.  This is our sixth year of parking cars at the county fair for Vince’s boy scout troop.  The grown ups mostly wave flags while standing in a single spot.  For many, many years, I’ve done a little dance move at my favorite spot and I entertain myself and often I get a smile or two from the drivers who drive by.  Every year, some other parents mention that they see me dancing out there and that they are looking forward to seeing that again in the coming year.  I want to emphasis that it is just a little dance move and not a full fledged dance and that it is only dancing when compared with all the other middle aged parents I’m hanging out with.  I don’t know what happened this year exactly, but Jeremy (I guess inspired by the kiki challenge / drake?) took it up a notch and created basically a whole dance routine and did it continuously at his shift where not only did he get smiles, but he got reactions like – “you go!” and “for Aretha!”  And he’s wearing funky socks while doing it.  And he’s basically got no rhythm.  No, I take that back, he has the beat, he just can’t dance as goes the saying about white men. Who is this guy?

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Thank you Eliana who came this week to watch after Edda and who’ll be coming on the weekends during the school year!  Hooray!  Our childcare is set for the coming fall. 

I went to see Crazy Rich Asians today because it was the only time this opening weekend I could fit it in and I’m doing my part to support mainstream movies with an Asian cast.  I did not enjoy the book (though I finished it) and I set my expectations low for the movie, but I was happily surprised.  I loved the movie!  You should go see it!  I swooned over seeing Singapore and thought it a bit bittersweet that I believe I will never again set foot in Singapore in my lifetime.  It was such a tough time for the family when we lived there for two years because we went thinking we’d travel all over Asia, especially India, but instead, we got Edda’s Rett diagnosis there and traveled to the Children’s Hospital a lot.

I was at the hospital all day Sat, all day Sunday and then because we had to do our 35ish combined parent hours at the fair and we don’t have much time this week, both Jeremy and I signed up to work from 8:30 am to 10 pm on Monday.  Because Monday was short on parent volunteers, we ended up working a lot.  30 min in the sun, then 30 min to rest and then again and again omg. – usually, with enough parent staffing, they can manage a 30 min shift with an hour break. I was on my feet for three days straight and boy, by the time I was doing my last fair shift at 9:30pm, I was wiped out.  I felt like I should have been able to sleep soundly on Monday night, but weird things are happening to my sleep.  First, my inconsiderate dog, Maxi, woke us up at 3 am for no good reason except to want to go outside and eat some grass.  And even if I wasn’t interrupted by Maxi, I feel like these days, even though my watch logs a steady 7 or 7.5 hours of sleep, my sleep is lighter somehow?  I don’t get enough deep, satisfying, refreshing sleep anymore.  Frustrating.  Everyday, Jeremy and I both get up at 5:45 and the first thing that we say to each other is – did you sleep well? and often the answer is no. 

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Kuala sent a bunch of camp photos of Edda I wanted to share with you.  Camp JCC is such a wonderful opportunity for Edda, it’ll be sad when she ages out.  It was a very nice summer for these two.

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We got a sleep safe bed delivered today for Edda.  It’s a twin size bed that looks like furniture, but it has a motorized hospital bed mechanism under it that’ll lift up the head or lift up the feet and most importantly for us, it has safety rails that go around all the sides.  We’ve been applying to insurance for it for a long time, I think this might have been our third go-around.  I think I try each time we are up for a new wheelchair.  Obviously, we’ve been denied twice before and I was not optimistic that we’d get it this time, but a few months ago, for whatever reason, it went through and here it is.  Insurance is a mysterious beast.  According to the invoice, this is a $16,404 bed.  That is almost the cost of a Honda Civic. Oh, a Honda Civic is more like $18,000.  But you could by a Honda Fit for the same $16,000.

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Vince is at the fair all week.  We got to experience a whole day with him on Monday.  Edda was at home and went to her after-care camp in the afternoon (Celebrate Ability), Eliana has moved in for the week to look after her.

Jeremy and I managed to coordinate our breaks to coincide at the same time and we went into the fair for a quick dinner date.  We might have even held hands, lol.  I got my annual corn dog.  Jeremy got his beloved turkey leg.  We split a grilled cheese sandwich from The Big Cheese and topped it off with a shared chocolate dipped soft serve cone.  I got to see my favorite rabbit exhibit, we saw the winning quilts and pies, and got to see some kids show some kids (goats) for judging. 

Jeremy, bless his heart, went again tonight to bump our points up to finish off our obligate hours.  He brought the kids some watermelon.

Remember I said that I loved nursing and that I know it’s what I’m suppose to be doing now?  I take that back tonight.  lol.  A long day.  With some yelling involved.  And poop.  There is always poop.

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