Ash Wed.

I’m trying to shake myself out of a funk. I have so much work to do, there is so much scheduled for our little family. The world is falling apart; we can’t decide on a Democratic nominee. I want to stay in bed and nap and eat cookies which is no good. My pants are unfortunately too tight – my fat is migrating from other parts right to my midsection.

Let’s go for an update:

Kitachi, our weeknight caregiver has been out since last Thursday, the first bit because she took time off to go to Mardi Gras (which she told me she was pretty sure she wasn’t going to sleep for five days, lol) and then the last two days for being sick. Jeremy and I’ve been running Edda pickups and night time routine. I’m afraid K will need the rest of the week to recover and anyways, Friday is a half day where Edda generally doesn’t have after care, so I’ll have her Friday afternoon.

Jeremy went to work on Monday, but came home in time to pick up Edda from aftercare and went to work on Tuesday, but came home early on Tuesday because he felt sick and worked from home today. This is Jeremy on Tuesday morning. We all start our mornings this way? Anyway’s he’s fine, feeling tired but working hard. A big week for him, his big ride hailing report came out Tuesday, you can read it here.

Vince is wrapping up scouts. His last meeting is next week! Then he’ll be 18 and age out of scouts. No more Tuesday night meetings. We’ll need to get him something for his birthday. He did get into U of Toronto yesterday – not into the Engineering program (which had an incredibly complex application with recorded video Q&A and a bunch of essays, this was not attempted), but into the Arts and Sciences program (which I think had no essays). Jeremy and I thought that he should visit and were trying to plan out a quick two day trip in the midst of a lot of craziness in the next two months, but Vince came home tonight and we asked how interested he was and he kinda shrugged and said that he’d pick an US engineering school over Toronto. We just said that Toronto was probably (on a global scale) the most prestigious school he applied to. It didn’t seem to sway him. I mentioned that maybe he could become Canadian. That seems like a big plus right now.

I’m worried. And I’m also one of Taylor Swift’s biggest fans. Our discussions about the coronavirus have taken a bit of a more serious turn. I think I’ll still going to go to work when the virus gets to our little hospital. Jeremy looked at me all earnestly a few days ago and said something like – I’m sure you aren’t going to shirk your responsibilities at the hospital – which was helpful to me. I probably will be fine if I get it, I have no underlying health issues. I just want to self-quarantine myself somewhere and not bring it home. Vince said – that’s so sad! I don’t mind being exposed to it. Come home everyday. Jeremy said – I’m sure there will be guidelines for health care workers from the CDC. We’ll figure it out.

Emy went back to Bard today. She left her birthday roses behind which are blooming beautifully. Sometimes the roses just wither and die and don’t open, but not these! It really was wonderful being able to celebrate her 40th together.

Maxi, Haverford, dimsum, party!

I don’t know what is up with Maxi, but the last two nights she’s been cuddling up next to me in bed. She is such a skittish dog that I don’t think she’s ever cozied up to me for more than a few minutes during her life. It’s weird (for her), but I’ll take it. I want a snuggler.

Jeremy went to Haverford for the weekend where he just happened to meet up with this guy who is a pediatric neurologist. Jeremy’s like – I hate talking to pediatric neurologists. Turns out this guy specializes in Rett, so he said he’d be happy to render a 2nd opinion on Edda’s seizures if we need it.

Vince came home from his last scout campout at noon today and we went out for dim sum.

Jeremy came home from Philly mid-afternoon and we hosted a birthday party for Emy.

Happy 40th! It was a hilarious party tonight. So funny.

40 & daffodils.

Emy turned 40 on Thursday and I took the opportunity to buy big number balloons. (She’s staying at the house for a week or so). Jeremy flew home on Thursday, arriving just in time for us to order takeout Chinese food and have an ice cream pie from Carmen’s. Vince drove to National airport on his own to pick up Jeremy in the late afternoon. He was, at first, going to take side streets because he hasn’t been on freeways the whole time he’s had his license (save the two or three times with me or Jeremy helping him merge on and off), but he took a big breath and did it.

My daffodils are blooming and immediately freezing.

We did make a neurology appointment for Edda in the next few weeks, but no one has seen seizures since that day where she had two. I’m cautiously hopeful. She seems both happy and at times unhappy. I think her feet hurt her. They are rigid and deformed from the very repetitive motion she uses for walking. But maybe she’s just unhappy because she’s a teenager and she is pissed at everything.

College update: A few more acceptances have rolled in: Penn State, Cal Poly Pomona both into chemical engineering. Toronto send a cryptic email saying that they passed on him on the first round, but that there are subsequent rounds and they’ll let him know in 4-5 weeks. Is this a waitlist thing? Vince thinks the first rounds is just for the shoo-ins and it’s not a waitlist thing. We’ll see. Both Jeremy and I have been like – you know, you don’t have to major in ChemE – and he’s like – why are you trying to talk me out of majoring in ChemE and I said – it’s hard. It’s not an easy major. He looked at me like I’m crazy. But, I want to set the record straight. I’m not crazy.

I went back to Rockville.

Hello, I’m back in Rockville. I flew home on Monday afternoon and Edda, thankfully, had no more seizures while I was gone and seemed to be back to her old self. Jeremy flew from Austin to SF on Monday where he’s networking for a few more days before he heads back to Rockville. I had to sneeze a couple of times on my very full flight from Austin and I coughed after I ate a dry cracker, but I stifled the sneezes with much nasal effort because I didn’t want to be the Chinese person spewing spittle willy nilly. I came home to Edda perfectly fine, Emy staying for a while visiting a sick friend, Vince slightly off kilter from meningitis vaccines he’d gotten earlier that day and Kitachi having stubbed her toe on a chair and icing it.

I want to recap quickly the rest of the vacation for future reference. Friday was Valentine’s day. The boys cooked dinner. On Sat, Jeremy went for an am bike ride, I went for a run. I took a rented Uber electric bike (fantastic! I’ll get one someday…) from the Stricker’s house to downtown Austin and hung around BookPeople and walked to various little stores and finally walked to the Austin Public library at about noon to have lunch with everyone. We walked around the fabulous new library, you can rent a laptop for four hours, for free! And there is a dedicated space for teens where, when we wandered in to check out the space, the librarian gently told us that we had to skidaddle unless we were expressly looking for a YA book.

Then we went home and I napped. I think Josh came by and moved furniture and boxes around. Then the four of us went out again – to ABGB for pizza, then walked to Bouldin Acres to play cornhole (Martins against Strickers), then walked to Golden Goose for a margarita and shuffleboard (girls against boys) and then finally to Tiny Pies for tiny pies – cherry, chocolate mousse and key lime.

Then we walked home – I don’t think I’ve been so happy in a long time. Good friends, good food, some nice weather and a whole evening with nothing to do. You know, never drinking makes drinking 1/2 an apple cider beer and a margarita on the rocks really enjoyable. Scott said they were a bad influence. haha.

Sunday morning we went to Bull Creek park which was Ruby’s favorite watering hole. We spent many, many weekend mornings here with Ruby and her friends – swimming and jumping (the dogs) and chatting (the humans). I remember Hoover – the dog who got large stones from the bottom of the water. I remember gestating Vince while at the park (that’s where we took the only photo of me pregnant with Vince). I was hoping to pet some dogs, but there were none there that morning. It has changed, there is a new bridge and the water pattern doesn’t seem quite the same. But it was nice to see it. I also spent a lot of time on this trip running around town lake on the hike and bike trail which reminded me of my first pregnancy pre-Vince. Ah, that little child. That babe (tucked in my tummy) and I walked around town lake most mornings. I’m so sorry you didn’t have a chance to see it! I missed both the human little one and the doggie little one on this Austin trip.

Sunday lunch we went to Smithville to eat BBQ. You see our sandwiches? That’s half a sandwich each. Jeremy ordered a sandwich and said we were going to share, so the lady gave us an extra bun and split it for us. It was still too much meat. Absolutely delicious, but a lot.

Sheila had a writing group and we took a walk through the trees which were burned in 2015.

Thank you Strickers for hosting! <3

Valentine’s Day

Jeremy left for Houston on Monday and I went through the rest of the week with the kids. On Tuesday, Edda had a best buddies basketball game. I had totally forgotten about it, but we made it there on time! It was organized to be a fundraiser for the best buddies programs. I thought they would have pizza for sale because the ad said there would be food concessions, but there were only chips and oreos. Not a proper dinner. I made ravioli when I got home.

I was really quite touched by this basketball activity. About 4-5 special needs kids were there (Edda being the most physically limited basketball wise), but there were about 50-75 typical kids there and many, many (well, when I say many – I mean about 10) of the high school kids came up to me, Edda and Kitachi and introduced themselves and gently encouraged Edda to play basketball (mostly futile). I met a mom of Edda’s classmate who I’ve been meaning to meet since the beginning of the school year. We had a long discussion about trusts, social security, day programs, etc. I don’t like these conversations mainly because they make me anxious because I think I’ll f it up. All our legal things have to be redone. A lot of money things have to be redone. We have to become guardians of Edda. I have to meet with lawyers and visit the social security office many times.

On Wed, the day before I would fly to Austin to meet up with Jeremy, Edda suffered two distinct and bad seizures. One at school at about noon – the teacher called – and one at 6pm at dinner in front of me, Kitachi, Alice & Sofi (our neighbor and her daughter). Edda hasn’t had a seizure in about a decade so to see two six hours apart on the day before I was set to leave town on a jet plane was distressing. The one that I saw lasted about a minute while she was sitting in her chair at dinner with eyes twitching, head jerking, jaw clenched and then finally coming out of it with drool and a full sense of tiredness. We carefully moved her to the sofa after dinner and it did take her the rest of the evening to “recover” as she was still twitchy. I had contingency plans if Edda had gotten sick with a cold or flu or something (Ning was going to take off work and stay home with Edda), but I didn’t have a seizure plan. So I told Vince if the school had to call 911 to send her to the hospital with a seizure, that he would have to just get up from class and go to the hospital and meet up with my parents. My parents can be the “adults” but they can not move Edda at all, so that’s where Vince needs to be there to help. And Kitachi has worked with many kids with seizure disorders and she saw Edda’s seizure and was comfortable caring for her over the long weekend. So that’s how I left the family, with Edda having newly onset seizures and also a slight fever that her teacher texted me about on Thursday morning (but the fever did not persist it was just a fluke.)

Jeremy picked me up in a rental pickup (hilarious) and we made it to Scott and Sheila’s where we saw Josh who helped Jeremy with mending his bike.

In the morning, I went with Sheila to the Y for a yoga class and the desk person asked if I had ever been to an Austin Y before and I said that probably 20 years ago and she found me! I’m still in the Y’s computer system after all these years. I’m still a local (ok, not really). It seems rare for us to spend a full Valentine’s day together, but that’s what we did. We went to all our old favorite places like the Central Market.

We went with Sheila to the macrobiotic place Casa de Luz which is serving the exact same thing it always serves.

The Austin marathon is happening this weekend and if I had planned better, maybe I would have coordinated enough to train up to running at least the half marathon, but alas I did not. But it didn’t stop me from asking Jeremy – you think I can run a half marathon right now? How slowly do you think I’d need to run it at to not stop at all. What about a full marathon? Anyways, I ran 5 miles on the town lake trail in the afternoon and decided that 5 miles is enough enough. No need to like quintuple that distance. We went to the expo at Palmer auditorium and tried some new energy bars and walked back to the Stricker’s.

And the boys made Valentine’s Day dinner for the two of us. The boys are super cute in the kitchen.

It was a very nice dinner with the Strickers. Edda is doing well. I had two glasses of champagne – very unusual. Lots of fun.


Yesterday, I arrived to the hospital floor at 6:30 am and the night charge was surprised to see me. He said – you aren’t on the list! I said – I’m not on the schedule? I swear I was suppose to work today. But I’m happy to go home. He laughed said – no, no, no, I’m keeping you, I tried to get a float nurse today but they didn’t give me one. It meant that on Sunday, we were fully staffed for a full floor which rarely happens. Usually we are mostly fully staffed. hahaha.

I took one more N95 mask and put it in my locker. Now I have hoarded two. I think that’ll do. I had a few people cough within 3 feet of me (ok really more like 1 foot away) including one night nurse who gave me report. She kept siddleing away from me while giving me her patients, but I couldn’t hear that well so I kept moving towards her and she said – I’m trying to not get you sick! I said – you coming back tonight? she said – yes. I said – you have to call out because you are too sick to come back to work. And she said – you think? And I looked at her as if she was a crazy person and said – Yes. You need to call out now so that they’ll have more time to find a float to take your place.

It wasn’t a bad shift. Fully staffed, it’s pretty manageable. But I was dragging. I’m still needy for no good reason. Honestly, it’s hard to give to needy people when you are needy yourself. It takes a lot of energy to throw kindness to people. I tried to manage it by eating too many cookies. I brought my personally purchased girl scout cookies to “share” and left them in the break room but I ate a lot of them myself. And I had a bad handoff to a night nurse.

I feel like I’m working too much again. I’m basically at the lowest number of shifts I can do to be a PRN staff. I’m working more at my desk work. I have almost no space for seeing friends and/or truely recreational things (I’ve been meaning to watch more movies, but I can never carve out 3 hours to do this thing – though I did see Parasite!). I hang out a lot at home which is fun for me, but not very exciting. I’m cooking more dinners for the family. I can’t quite tell how much time will open up once Vince is in college. I don’t spend a lot of time doing things with Vince especially since he’s been driving, but I feel sometimes that I arrange my time so I can just be around when he’s around. I get rewarded for this. He’ll pop into my room with a funny story or little concern most every day for a few minutes, but it doesn’t happen on a schedule. Will I want to be at home less once he’s gone? I’m not sure. I’m thinking about going to graduate school for nursing. Jeremy is excited about it, Vickey is excited about it, my parents are excited about it. I’m in theory excited about it, but honestly, I’d have to keep my full time job, my part time nursing job and then pile on top of it going to school (which probably would mostly be online which makes it less appealing to me, but very efficient).

I’m still entertaining myself with the Duolingo app. It’s quite good at teaching me basic Spanish. I’m impressed with the app. And I’m learning all the time from my patients. Chew. Open your mouth. Blood. Blood sugar? More? Poop is the same in both languages. My Spanish is going to be terrible, but I’m hoping to be OK with that.

I dropped Jeremy off mid-day to National Airport. He’s in Houston at the beginning of the week. And then we are going to meet up in Austin for Valentine’s Day weekend (without the kids!) and then he’s headed to California for the middle of next week and I’ll head home. I’m looking forward to this vacation. I’m hoping to find a Texas dog to bring home. He’ll be gone from the house for two weeks. He promised that in exchange for the ride to the airport, we’d have a lunch date pre-security checkpoint, which ended up being subpar at the Dunkin’ Donuts.

He’s staying at a hotel which has a lazy river in the shape of Texas. There you go. Poor thing, he didn’t pack his swim suit.


I am needy today. I walked around the house asking for hugs. A few reasons for this – I’m at the hospital tomorrow and Jeremy’s going to be traveling starting Monday. I asked Jeremy if the coronavirus comes to my little community hospital am I still going to go to work? He said that if it’s at your hospital, you might as well go because we are all going to be in the midst of a terrible outbreak here. Then I thought, I need a plan if we have an outbreak here. OK, here’s my plan: I’m going to move my parents to my house and then self-quarantine myself at my parents’ house. I’ll need to run high speed internet to their house and move my regular job there and just hang out there and work both at their home and at the hospital until everything blows over. Or until I get sick. Sounds great, right? I’m not really that paranoid, it’s just that everything in the world news is depressing and I’m needy. Now that I have this plan, I’m sure it won’t happen.

We went to lunch with my parents to celebrate refinancing the house to take out cash to pay for Vince’s college. We are ready!

I spent a lot of time today training a new caregiver for Edda. Going through how to give Edda a shower and get her ready for an outing. The three of us went out to lunch at the Habit Burger – one of our favorites but new to our new caregiver. It was a fun outing.

ADA & callbacks.

Edda, Catherine, Danny and Ms. Miller

Catherine is a junior at Wootton who has been leading the Best Buddies program. She hosts activities throughout the year to help the special needs kids at Wootton become more involved with the school at large. When I went to Wootton, there was a special needs program, but I knew almost none of the kids in it. Catherine encouraged Edda to go to homecoming and Edda is signed up to play basketball next week (will she like basketball? I think she’ll take after her father and not enjoy anything that involves a ball). I got a text from Edda’s teacher early in the week that said that Catherine was going to testify in front of the county council to ask that MCPS schools be fully ADA accessible and would Edda be able to make the testimony. So after some logistical rescheduling, we went and Catherine was fantastic. She got the biggest applause of the night. As we were walking home, Jeremy quipped that she did better than a lot of the other advocacy professionals that went before and after her. Edda was pleased to go, she laughed the whole time we were in the rain walking/rolling from the parking lot to the building and into the meeting room. You can see her testimony at th 27:00 minute mark. So impressed. Kids these days!

Vince went to callbacks yesterday afternoon for the spring play. It was two hours of reading parts with other partners trying out combinations and recombinations of people and situations. He came home exhausted but semi-optimistic. Obviously, there are the drama kids who have been trying out and performing for years, and the cast is very small. He says that he more than held his own for someone who started three days ago. He did not get a part, so a bit disappointed last night.

Guardianship, gel spacers and callbacks.

We went to a financial planning/guardianship meeting this evening. There are about 4-5 meetings a year that are put together to help us with Edda’s transition into adulthood and though we don’t have to do much right now, Edda’s coordinator at her high school suggested that we go to these meetings whenever we can just to get used to the idea for a few years. Last year, I went to a lot of these meetings and I did crossword puzzles or scrolled through instagram. This year, Jeremy went with me and I listened to about half of the presentations. After Vince turns 18 and goes to college, the next big thing will be all the legal and financial things that have to be put in place for Edda.

My father was suppose to have the targeting set up for his radiation treatment for his prostate cancer set up today. So I texted and checked in on him and it turned out he had cancelled the appointment. It’s because when he opted for the radiation treatment, they usually put a gel spacer into the body to kind of separate the rectum from the prostate to minimize the exposure of the radiation to the rectum. My father had declined to have the spacer because he didn’t want to have the gel spacer (which eventually dissolves) implanted. They said that was fine, he’d just have to take a laxative (for 3 days prior) or something before the targeting was performed. Anyways, he had second thoughts about this and has been in contact with my cousin Carrie, who was like 12 at our wedding, but now is a full fledged urologist with UCLA and she said (at midnight last night) – well, the spacer is standard of care at UCLA – it helps minimize the chance of rectal cancer from the radiation. So he’s having the spacer put in. I was like – they did offer the spacer first right? He said, yeah, they did offer it first. I’m like – I’m glad Carrie is helping you out. He said that he wanted to call me and tell me the update but was worried that I’d be busy working. I’m like I am working, but I just have a pile of paper, it’s not like I’m Carrie in the middle of surgery and can’t take your call until midnight. Call me anytime.

Vince is trying out for the spring play – Lend me a Tenor. He was all nervous today and came home after the audition all exhausted. He had to audition in front of everyone else who was auditioning, so about 25 people. Vince said – you look at someone acting and you say – oh! that’s so easy, anyone can act. And then you try to act and you realize that it’s really hard. It’s a small cast, 4 male parts. They are going to double cast and tonight he found out he made callbacks for two roles – Max and Tito. Callbacks are tomorrow and cast list will be announced Friday.

Shift, new hire, hair.

I was at the hospital yesterday. A fine shift as shifts go – 4 patients which is the proper amount of patients to have – and all hemodynamically stable which is also the proper state of patients for my level of care. Still tired today though. There did not seem to be a shortage of masks at work which was a relief as I needed to use masks throughout the day.

Jeremy spent the past two days orienting a new hire. He’s busy.

Vince’s hair. All that glorious hair. Grades for the fall semester are in – only one more semester of high school before it’s all done.