The stairlift has been squeaking terribly for the past few weeks (months?) and we are trying to fix it. While I was taking it apart, I noticed that the battery connections were corroded. So that needs to be cleaned and new batteries need to be ordered. I leaned on Jeremy and his lubrication knowledge – he spends an inordinate amount of time thinking of different types of lubrication because of his bike chains/maintenance. I just wanted to kind of cover the whole thing in WD-40, but Jeremy was like -nonono! WD-40 dissolves all the existing lubricants, it’ll be no good in the long run.
So I thought one of these wheels was stuck and not rolling, so Jeremy found a particular lube that he uses for his bike and dripped it onto to stuck wheel and we let it sit overnight and then this morning, it rolled! no squeaking. You can see on the base of the chairlift when it was manufactured – we’ve had this stairlift for almost ten years. This was easier than my solution which was to take the whole chair off the rail. It’s easy to find dishwasher repair videos, it’s much harder to find stair lift repair manuals and none show a person removing a chair from the rail. And if I screwed up, I’d be carrying Edda up and down the stairs for a while until I got a repairperson to come.
Thu, organizer extraordinaire, reserved a whole theatre for her vaxxed friends to see Shang-Chi and the Legends of the Ten Rings. We went (Ning minded Edda for the evening), Seth, Christine, Jane and George also went. You can see me and Jeremy in the upper right corner with our hands waving. Of course, I hadn’t been to a movie in – forever. I’ve been loving seeing all these movies/shows with Asians in the lead roles, in just the last month I’ve watched Never Have I Ever (Netflix), The Chair (Netflix) and now this movie. Much of the movie is in Chinese. I have a weird feeling that for this “narration” kind of language where the wording is a bit more formal and the enunciation clear and the speech is steady (think NPR or This American Life), that I might understand more Spanish than Chinese since Spanish is so close to English. Chinese is still much, much better for casual, spontaneous conversational talking. I still can’t spill out the simplest things in Spanish.
We are still looking for someone to help with Edda in the evenings. Yesterday we had a promising lead, but, as was inevitable sometime during the search, she told me she wasn’t vaccinated. This was someone who works in the public school system during the day. I was disappointed, but not surprised, but I didn’t take the opportunity to encourage her to get the vaccine which I had promised myself I would try to do each time when faced with an unvaccinated person. I’m still struggling myself with being productive, I still do mostly want to lie in bed and watch TV. I feel like 2 years ago, I could cross things off my list quickly and to-do lists were motivating. Now, I find them onerous, but had been making strides by cutting back my obligations. But things can throw me off, like the unvaxxed childcare conversation happened at 2:30 pm, which I wasn’t expecting and then I knew I had to leave the house at 4:30 to get Edda from aftercare and I couldn’t muster myself to work well after the phone call. I think in the past, I would have been able to do that easily, but not yesterday. And I decided, finally, that I needed a password manager, so I started that a few days ago. There are just too many passwords that need to be kept track of and that need to be shared with Jeremy and Vince. So I’m paying for a password manager and added like two simple, non-critical things to it to try to learn how to use it, Southwest and WordPress, and the I got to the first financial website and they want me to *call* them to change the password. But I think Jeremy needs to call because I think, technically, it’s his account. And then I just want to go to bed and watch TV. Hahaha.
Yesterday was Jeremy’s birthday. He turned 53. I asked him if he wanted a small birthday party – pizza and ice cream and he declined. He’s spent the last few months preparing and training for this one hour mountain climb race and he’s still trying to drop weight and doesn’t want extra food in the house. He’s now thinner than I’ve ever known him and the last time he was at this weight, he was in high school.
You know Jenny Simpson? She’s a three time olympian, bronze medalist in the 1500 in the Rio Games. She’s making her long distance debut at my (haha! my) road race on Sunday. The run on Sunday is hosting the USATF Men’s and Women’s Ten Mile Championships – so just so you know, I’m running in the National Ten Mile Championships this weekend. I think Jenny is going to try to run it in about 52 minutes. 5:12 per mile pace. One of my goals is to run faster than twice as slow as Jenny Simpson. Hahahaha. Jeremy is a better athlete than me because I think he’s trying to only be 15-20% 50% (edit from Jeremy (40 min for a pro cyclist, 1 hour for Jeremy)) slower than the winning time of the uphill mountain climb. Jeremy also notes though that I’m sandbagging (likely to meet my goal) and he’s setting an aggressive goal (all the stars need to align).
The furniture did make it to Philly. The unloading was more expertly done than the loading. The German chest:
The NYC murphy bed which needs to be anchored to the wall/floor and will be done another time.
The Taiwanese table with glass top. I’m happy the furniture is back with the original owners and I think Bob and Katherine are happy to have the furniture back. We’ve been, in Rockville, unfurling the house back into our “empty nest” configuration – with Vince gone and all this extra furniture gone. Our house is still full and needs more decluttering, but I think I got over 1,000 pounds out of the house this weekend.
Jeremy took ground transit for the first time in over 18 months. First the train to DC.
And then the Metro with his new comfy behind the head KN95 masks.
I was at the hospital yesterday. Somehow, the night charge nurse, managed to keep full nurse staffing on kind of an empty floor (both of our techs called out – that was the reason) and so I had three patients for like 80% of the day. When she handed me the assignment, she’s like – it’s Christmas today. A dream. I got all of my online training done for the new software implementing in October during my shift. That is going to be a mess. I found out that a couple of nurses are doing local COVID contracts – 8 week contract for three shifts a week for $3900 per week. That’s $1,300 a shift. That is a lot of $ and I’m curious to hear how the experience is. You know when you work on a covid unit, most everyone is a travel nurse and so no one there really is friends with each other – you go to work and no one says hello to you and you gotta take care of folks who decided to not get vaccinated. I think the $3900 is reasonable and pretty much what it takes to get someone to work on that unit. Everyone is in/out to make their money and go home.
Money is just flying out of the house. September is the season for that. Totally expected for me, a little unexpected for Vince. He’s moving into an apartment and needs to buy all the things – pots, sheets, shower curtains, cleaning supplies, food, etc – and I had told him we’d cover those starting expenses, but that he will soon need to budget. He called me slightly upset from the parking lot of the Davis Target and said, I feel so bad, I spent so much money! I didn’t know it would add up to hundreds of dollars. (Haven’t we all said that at the Target checkout line?) I said, it’s a lot of money, but it’s always a lot of money to move into your own place. And now you know, when you move yourself, how much $ it is to just start out. He said – I spent like a more than a week’s worth of my work at Camp JCC. I need to learn to budget.
We moved the murphy bed and the german chest and the taiwanese table to Philly to my in-laws house. For the moving out, we hired some movers and there were hiccups, but it all eventually got into the U-haul. Jeremy drove up to Philly last night and spent the night there.
Look at this photo: All I can see is how grey my hair is and what the hell is going on with my mullet? I’m still sporting pandemic hair. I haven’t gotten my hair cut by a professional in years now.
Yesterday, the leftovers of Ida made it to Maryland and MCPS closed down two hours early. But even before that, Edda’s school had no power and no AC and was sent home earlier. So I had her as my officemate for most of the day.
Edda’s seizures held steady (meaning none) all summer on 1000 BID Keppra and 600 mg am and 900 mg pm of Trileptal. So once summer camp was over, we wanted to wean her off of Keppra and we did it 250 mg BID per week, so that would have taken us 4 weeks, but we made it only three until her seizures came back (2 in two days about 2 days after the dose lowering change) at a dose of 250 BID Keppra. So all of us sighed and ramped back up to 500 mg BID Keppra. So we are holding steady at that dose. Though it’s hard to really tell, I thought as we were lowering the dose that Edda was laughing and enjoying herself more. But I have a feeling we are right on the edge of seizure control. She’s doing lots of weird eyebrow things which are a precursor seizure activity. But we’ll hold at 500 mg and see how it goes. We celebrated (ha!) by buying a hospital grade pill crusher. We had been mortar and pestle-ing the pills in something meant to crush herbs I think and leaving little circle indentations in our dining room table every time we crush the pills, but now we are resigned to forever crushing pills, so I bought the medical grade one.
Vince moved into a very nice apartment yesterday (brand new, own bedroom, dishwasher (?!)) and met his roommate’s family. We got to FaceTime with him and meet his roommate. He spent time emptying his storage unit and settling into his room. Today is grocery shopping.
I picked Edda up early from after care and we left the house at 4 pm to take Vince to Dulles for his 7 pm flight to Sacramento. We picked a cheap, late flight because Vince, as per usual, flipped his schedule upside down last week – though he did cheerfully make every dinner with us, which was what was agreed to when I knew he’d flip his schedule.
We brought Charlotte the dog with us because her mom lives close to Dulles and is back from vacation so we were going to do the dog exchange at the cell lot there. Charlotte seems to love cars, so was very excited to be going on a trip.
He considered this look “emo” – though to me, it looks very college kid. The doc martens, the blue hair. He said he thought he packed 180 pounds of luggage – no fees, it all got on the plane. We dropped him off at the curb, anticipating a flight to Chicago, a tight layover, a flight to Sac, an Uber ride to campus with late check in at the Hyatt on campus.
He humored me with a selfie.
We drove to the cell lot to reunite Charlotte with Vickey and wait for Vince to check in and clear security. With both missions complete, we drove back to Maryland. On the way home, Jeremy complimented me and said – you and Vince didn’t fight all summer! I know it wasn’t easy for you. I replied – actually, it was easier than I thought it would be, I was proud of him for working all summer at a job that was a lot of work and he cared a lot about it. The fighting is mostly my fault. Vince is a good kid with a good head on his shoulders and many talents. Though he does almost everything differently than I would do them. He likes things fluid, last minute, and is generally not afraid of failing and trying again. I’m the opposite – more rigid, prepared and want to get things right the first time. And, because I’m me, I think the way that I do things is the best way. So the fighting results from trying to urge him to do the things he’s doing my way instead of his way. But Jeremy reminds me, you have to see him as one of your patients or your best friend’s kid – if you wouldn’t say it to them, you shouldn’t say it to Vince. This is a hard thing for me. It’s not that I don’t tell my patients to change their lives, I do. The alcoholic who comes in for the 4th time in 6 months to detox and he tells me that he really wants to quit for his girls and I tell him he can do it, just keep trying even if you fail, just keep going. Or the patient who gets plastic surgery in a hotel room and ends up with an infection, I try to suggest that maybe that wasn’t a wise decision and, while there the nothing wrong with plastic surgery, maybe saving $ a paying at a reputable place would have been a better approach. And as for my friend’s kids, these days I just relish in their accomplishments and their thoughtfulness / kindness and can see them work through complicated stuff with grace that goes beyond their years. Which is all the same things I see in Vince. He made all his connections and made it to the hotel. May the force be with him. May the force be with all of us.
Yesterday was Edda’s first day back at school. We eagerly awaited the bus at 7:15 am. It was 15 minutes late – but no worries. We had Charlotte the dog on the lookout for it.
I met the driver and the bus aide and we had a wheelchair lift malfunction which took 20 min to resolve, but we did it! You see the little kid on the next lawn? That kids loves school buses and makes special morning trips to see Edda’s bus. So sweet! Last year in a stroller, this year, walking.
I think there are supposed to be five kids on the bus, but the other kids aren’t taking the bus (at least not now) so Edda has this all to herself. An enormous bus and two employees. I think Edda naps during the ride. OK, and I’m wearing my favorite pandemic sweatshirt which was a gift from a friend and I love it even though it really is a crazy thing.
And there she goes. We are grateful for her team at school. We are grateful for her after school team as well. This is Edda’s first senior year. She gets to go to school until she’s 21. I try to not think too hard about what her senior year would have been like without Rett because it’s a fantasy. I have a college classmate who worked in the Obama white house who recently posted on FB that she made one million miles on an airline and the flight crew personally thanked her for her loyalty and I wonder, could that have been me? Would I wanted that to have been me? That is a fantasy too. Sometimes I feel the two are tied, Edda’s diagnosis and my ambitions – I sometimes think that Edda’s disability allowed me to live the life I was meant to live and I’m a much, much better person. But, that’s crazy too because I would have given up all the self-awareness I gained in less than a heartbeat for Edda to not have Rett Syndrome. I would gladly reverted back to my more self-centered and less compassionate person for Edda to be applying for colleges now, haha, I wouldn’t even know what I was missing. One million airline miles and the ear of the president. I don’t know if I could have done that. Jeremy calculated it to be 150 cross-country round trip flights. If I did one trip every week, it would have taken me three years. I don’t think I would have had that in me. Now I just want to eat, read, sleep, place random games on my phone, watch the kids grow up, walk with my friends, take care of my family. I hardly ever want to travel anywhere. Which I guess is good because, you know, we are still in a pandemic even though the NYT is putting it below the fold now.
hi loves, we celebrated my parents’ 51st and our 23rd wedding anniversary on Saturday. Jeremy and I had wanted to get married on my parents’ anniversary – August 22nd, but there was a scheduling conflict, so we picked the week after on the 29th. To this day, I get confused on whether our anniversary is the 28th or the 29th, so I always take my parents anniversary on the 22nd and add 7 to it – that’s how I remember it. 29th!!
My parents, who in non-pandemic times, would love love love to go to a fancy restaurant, are are unwilling to eat publicly indoors, agreed to a surf and turf dinner at our house. Jeremy got the best steaks at Whole Foods, I got a cake from a nice Bakery. We made a cheese plate (everyone loves blue, we should just forgo the other kinds)>
We got fresh Maryland crabs from our local seafood place a mile from my house. I’ve always wondered about that place, but have never gone. It’s most famous for shipping crab all over the country, but they do have crabs to buy locally which was unclear from the website. We called on Friday and they said call on Saturday morning to place the order and then on Saturday morning we called and they said to call later at 3pm because that’s when the crabs will be delivered. So we called at 3 pm and got some crabs. That was more complicated than I thought it should be, but maybe it made it more exciting?
My mother loves the crabs. I remember as a kid, crabs were a special, but semi-frequent thing. I would stand on a stool in front of the sink and kind of tease the crabs with chopsticks and then we would steam them and serve them on a newspaper covered table and hammer them to bits and pieces.
Vince got to steam them and we got to pour Old Bay into the pot (Old Bay was not a childhood steamed crab memory – only when I grew up did I understand Old Bay was a Maryland thing with crabs. The life of an immigrant kid with no internet access.)
And who has newspapers to cover the table? No one. Dad got some old paper they use to wrap dishes in to move them.
This is a good photo of my parents, but I had to be silly and do rabbit ears. Jeremy looks good in this photo too. Forgive me.