Weekend update.

We toured a very nice aftercare camp for Edda on Friday. Arguably, it may be better than Edda’s old camp. The hours are longer (they have Saturday hours too!) and they have swim! So we are a “go!” for camp. It’s a tiny bit further from the house, so I need to straighten out the bussing from school, but I think I can manage that.

I was at the hospital yesterday and found out that our hospital is hemorrhaging (haha, punny.) money. They restructured cost centers (there are three cost centers, I gather and they reduced it to two and kicked out the person running one of them – there is an ice cream social to thank them for their hard work next Tuesday) and they are also looking to lay off about 30 management positions and no bedside nursing positions. I was most interested in reading the memo about how to stretch bedside nursing capacity. Basically, they are seeing that nursing will be short for the next generation (?) and so what can you do? We are still running our floor with 1/6 of the beds empty and have been for many months because we can’t staff them. So, in an ideal, fully staffed floor, I should have only 4 patients. I usually have 5. On occasion I have 6. They are trying to figure out, I think, how a nurse can cover 8 patients. So I read the memo. One idea is a virtual nurse (?). I was a little shocked about this. I’m not quite sure how this person would help me. Could they do all the paperwork and I would not have to chart? The thing about a virtual nurse is that, they are helpful when the patient is completely oriented and competent. But when the patient is slightly confused, or really confused, or hard of hearing, or english is their second language, etc – which is a lot of the the time, it’s hard to see how this would help me out. Here is a company that does it:

The other idea, which I like better, is to team the nurse up with another person 1:1 like a CNA or a LPN. I would prefer someone who can pass medications, so that would be an LPN. So two people would have 8 patients. The thing about this is that you can be teamed up with a person that completely annoys you or a person that is completely wonderful. As a side note, often, the first half of the shift, I’m completely annoyed – “Can I have some creamer? What’s up with Kosher meals, will they make them low-fiber? This water is room temperature, I take my medications only with ice water.” Argh, these are enough to drive me crazy, but then I settle and I’m ok with it. And then I don’t want to ask my server at a restaurant for anything.

Elka graduated from training school on Saturday. She did very well. But at home three hours later, she peed on the floor. I was disappointed. We are all terribly, terribly flawed. Ruby had this terrible leash aggression and would pull all the time whenever she saw another dog. Maxi had anxiety and wouldn’t let you snuggle with her and she had regular panic attacks. Elka is very loving – probably the most loving of all the dogs, but is the most unwilling to do what you say and still likes to pee in the house.

Party and sleep.

Sofie spent the night on Wed night. We had a little dinner party – Sofie and her friend Elen and Elen’s mom. Plus us and Eliana. Seven people and we had a great time (though I always feel like covid is lurking around the corner). Jeremy made turkey tetrazzini and talked to Elen’s mom about local planning/zoning. The dogs played. We like having these little parties and it’s loads of fun, but it always messes with our sleep schedule.

Jeremy thinks it’s an unreasonable goal to sleep slightly more than 8 hours every night. If we want to sleep 8 hours every night, it basically means no night activities ever, lol.

NP school.

I got into nurse practitioner school at Maryland at the campus 2 miles away from the house which starts in a few weeks! I’m so pleased that I got offered a late spot, but I’m going to turn down the offer. It would be a 5 year program which is 3/5ths time. The full time is 3 years. I think I would enjoy NP school, but I don’t really want to be an NP. All those people who want SSRIs, adderall, opioids (I mean, I get it. At times, I’ve wanted these things and I’ve wanted them quickly.) People who do want vaccines, or really don’t want vaccines. Antibiotics for viral infections. Ivermectin or who knows what. Or, honestly, the worst thing is missing something very important thinking that it isn’t important or never figuring it out despite trying very hard. I’ve been on the edges of this at the hospital and I can’t believe I ever wanted to be a doctor. I have other ideas. Anyways, it’s also true that I can’t really find the 10-15 hours a week to do this. Honestly, to do a good job at NP school it would be easily over 20 hours a week. I’d have to let go of doing my very very best which I hate doing. I’d also have to quit my bedside nursing job, which I don’t really want to do just right now.

Covid and sleep.

Isabella (Edda’s camp counselor) and Eliana (Edda’s weekend caregiver) both tested positive for Covid last week. They do not see each other, they know of each other, but have never met – so they caught it from different people. We generally do not mask in the house anymore, though we have done it in the past. Isabella was working on here on Friday night, having dinner with us and preparing to give Edda a shower and tuck her into bed when I heard a few sniffles and coughs coming from her direction. She said she was at the doctor’s on Thursday (the day before) for a well check up (for which she was 100% well) for college and they offered a PCR (?) test and that was negative and she took a rapid on Friday am (with the slight cough) and that was negative and she went to work (with Edda, all day!) – but I quickly sent her home on Friday night and tucked Edda into bed myself. The text came in on Sunday that she was positive. So we are testing Edda each day before we send her to camp. Edda has not yet gotten covid (Vince has not yet either, which I can not believe). Edda has had many lengthy and known exposures, so I’m not sure quite what is going on. We will just have to wait.

Last week was very active and stressful and in response, I’m trying to pull back and make it a quiet week to recover. Slow the socializing, cull obligations, reduce the running and sleep more. Both Jeremy and I enjoy using our Garmin watches to track our sleep – esp our body batteries. It’s not that easy to get yourself to 100 every morning. In order to do that, it really needs to be lights out at 9pm, which means we need to be getting ready for bed at about 8:30 – which is craziness. But we try.

Dog park and a lot of running.

We are taking care of Pip during the summer while Kiki and Bob are traveling to New Mexico. I took him to the dog park for the first time today. They’ve been resurfacing the mulch with astroturf which I’m undecided on, so it’s been closed the last week. I can only exercise the dogs so much – it takes a lot to wear out Elka – and they have completely different walking personalities, so optimally they should each get separate walks which sometimes happens and sometimes does not and they were bouncing off the walls today. It took a little while for the vaccination records to be cleared up at the front gate, but we made it into the park and Pip was happy. Living his best life.

I’m still training for this marathon. You know what is useful about having a partner who trains 16-20 hours a week and does races which range from 5-7 hours? One’s own marathon training seems totally reasonable and not very much training. I try to not think too hard about training, the paces or the time or the distance. I like to run, I like to get faster, and I like to take it seriously, but not too seriously. I, unlike Jeremy, have no hope of being on any podium of any race. Paul is still sending me weekly workouts, which I, for the most part, follow. But sometimes I change it. Which is why to my surprise and kind of shock, last night I dinner, Jeremy and I calculated that I ran 47 miles last week. Here’s how it sussed out:

  • M – 6 miles, 80 min NYC. Slow over bridges – lots of stopping and navigating.
  • T – 10 miles, 2 hours 5 min NYC, I wanted to get to Prospect park, beautiful day. I thought this would be 7-8, but it turned into 10.
  • W – 1 hour easy – 5 miles (with Elka)
  • R – 8.75 miles 90 min on treadmill at 10:15 pace
  • F – off
  • S – 1 hour easy – 5 miles
  • S – 13 miles on the canal – this took almost 2.5 hours (11:49 / 11:10 / 11:07 / 11:09 / 11:14 / 11:01 / 11:07 / 11:05 / 10:56 / 10:43 / 10:38 / 10:39 / 10:19). I did run the extra 0.1 to make it a half marathon

So, way way more than I usually would do, the NYC runs were entirely of my doing because I wanted to do it, but the rest were workouts that Paul sent me. This, I think, is too much running right now, but it felt good. I feel strong.

Bike crash.

Jeremy podiumed in his last race! Look at these old guys living their best lives. haha. Jeremy texted me this photo as soon as he got it, but waited three hours until he got home to tell me that he fell off his bike.

About 60% through the race, Jeremy was trying to eat a Clif bar while riding downhill and mishandled the attempt and fell. He was alone, he did not hit his head or break any bones, but he has many patches of road rash. Shoulder, elbow, hip, knee. He managed to get up, dismiss the sending of an emergency beacon (his bike computer is set to text me in case he crashes, but it checks with Jeremy first before sending it out), and continue riding another 3 hours.

I’m relieved that he is OK (of course, I would prefer no accidents) and since I dress wounds for a part-time living, I bandaged his knee up last night and redressed it this morning.


After I wrote that love note to Jeremy, predictably I got searingly mad at him Thursday afternoon when he forgot to pick up Edda from camp. Now, he technically didn’t “forget”, he made a mistake. He knew he was supposed to pick Edda up and was remembering it, but he had traveled to Chicago earlier this week and his computer clock was an hour behind all day on Thursday. (How he made it to 4pm without fixing it, I have no idea since his meetings all day were strangely an hour off?). Context is that we have both been traveling all week (Jeremy Fri/Sat (bike race), Doris Sun/Mon/Tues (NYC trip), Jeremy Tues/Wed (Chicago), Jeremy Fri/Sat (bike race)) and the cancelling of the aftercare camp thing has thrown me for a terrible loop which I have been dealing with all week, calling/emailing, following up, buying flowers/chocolate for camp staff dropping in to maintain those relationships after the goodbye and I was busy Thursday night (Sofie’s summer camp performance) – so I asked Jeremy on the one day we are together to pick Edda up at camp. So when I got off the treadmill at 4 pm, and walked into the hallway and noticed Jeremy’s office door closed, I thought to myself – he’s still there even though he should be at camp, I opened the door, saw him at his desk and promptly yelled at him for not picking up Edda. Then he looked at me and said whatever he said (something about his computer clock), and grabbed his keys and said the exact wrong thing – which was “Where do I go?” And then I got furious at him and then he got mad at me and said – “don’t yell at me, I haven’t picked her up all summer! I don’t know where to go! they change the spot all the time” and then I got whatever the feeling is after furious – enraged? fuming? Also context, I had, at 11 am (five hours before pickup), totally aced a nurse practitioner interview to a program (What kind of work setting do you imagine yourself in when you are nurse practitioner? ummm, doing camp drop/off and pick up? oh, I forgot! There is no camp at age 23. There is only me.) to start in 5 weeks to which I have already (mostly) decided I can’t go to because I have to deal with so much Edda stuff. <- This is not true. If I really wanted to go, I would figure out the Edda thing, no problem.

Now, normally, I think I would not get mad at this. I understand that your computer can be an hour behind because you were in Chicago. But, I’m going to launch into the most boring thing ever, which is pick up and drop off logistics. Normally, I have Grace doing both the drop off/pick up of Edda. Fine, easy, she lives on our street. Isabella takes care of Edda in the afternoon/evenings, but does not drive. So Grace gives both Isabella and Edda a ride home from camp. Also good! But, literally there are 10,000 exceptions. For example, this week there is staff meeting on Tuesday afternoons and Friday mornings to which Edda is actively discouraged to attend, so I pick up/drop off those days. Weekly, Isabella has a standing therapy appt on Thursdays, so she can’t come those days, so I remind Grace to not expect Isabella on Thursdays, but on Tuesdays to drive only Isabella back home after the staff meeting because I would have picked up Edda before the staff meetings. Isabella also texted on Monday saying she couldn’t work that afternoon and would that be OK? Grace – texted on Wed that she couldn’t do carpooling on Thursday/Friday because she’d be out of town attending college orientation. I have like so many other people’s schedules to overlay on my own schedule and it literally is musical cars because the combination of people/cars is approaching some combinatorial limit and it pretty much means I have to clear those times on my calendar, so even though I’m not driving (which is good), I have to be prepared to drive. Anyways, Jeremy is not aware and does not have to remember any of these details. He does not have to remember when camp starts or ends. It’s infuriating. It will never be resolved.

Anyways, so boring. And we are mostly made up, he left for his biking race trip this weekend and we are mostly friendly towards each other again. I also know he wanted to leave at 4-5 pm (aka before dinner), but he picked up Edda and Isabella at camp on Friday, made dinner, cleaned the kitchen and washed the dishes and left after all the chores were done – dogs walked, Edda in bed. Also, there is good news on the camp front, I think I’ve found another spot for Edda not too far from the house. I’ve gotten a clearer picture of what prompted the closing of Edda’s camp and the things that they have had to deal with and I’m things are probably going to resolve ok. I talked seriously with our provider about the hard time we have staffing for Edda this past year and listened to a resolution and I also may have found someone (who is committed to another family) to might be willing to squeeze us into her schedule in the fall. (Again – all below Jeremy’s radar. Please, just pick Edda up. At 4 pm.).

I went to Sofie’s Guys and Dolls performance on Thursday night. I was tired and not sociable, but it was lovely as all drama performances are.


Ahhh, it was kind of a discouraging post that I left you with. Sorry! I had a very social weekend / beginning of the week which was just what I needed and I come to my desk this morning refreshed and ready to tackle all sorts of problems. kind of. haha. What helped me the most was 1) talking to Jeremy 2) talking to all my family and friends and taking the time to regroup and think. Thank you all, for listening to me.

Today marks the 27th anniversary of our first kiss. Jeremy is in Chicago now and I texted him the significance of today’s date and that I’d do it all over again! So many times. 10,000 times. We are well suited to each other. A lifetime is not enough. I rely so much on Jeremy to calm me and regulate my making an emotional catastrophe of everything. I mean, I’m much better at doing it by myself now than I was when we met, but Jeremy steadies me and he wasn’t at home when I got the email so I spiraled a bit. Once I steady myself, I’m usually OK with things. Like – now I’m ok with opening an adult day program if it comes down to it (I already know the space to rent) or I’m ok with Edda at home with me all the time while I work. That’s OK too. I don’t mean ok like I want to do it or that it’s the best thing to do or that it’s the best outcome – ok means – I understand this is the situation I’m in and I can work with it. And I’ll be ok, I won’t collapse into a pile of tears.

Jeremy left for a bike race on Friday/Saturday, so I hosted Megan’s b-day party on Friday night and then on Saturday, I took Elka to dog training. And Edda too.

You know, it’s just fine taking Edda to places. Jeremy is often bike racing on the weekends, so I’ve taken Edda to dog training a few weeks in a row now. And it’s fine. In my head, I can kind of build it up to more than it is. She watches the dogs, she naps & watches TV on an iPad and is generally content. The staff at the training help with adjusting her mask and open the garage door before we ask now for a smooth roll into the facility. The dogs get exposed to people in wheel chairs. One dog in particular, was agitated when the training took him around to Edda’s spot, but after 4 weeks, there is just calmness. Now I know that dog will be fine with other people in wheelchairs.

On Saturday night, I hosted take out dinner in my garage for the usual suspects. They were kind and accommodated having Edda in attendance because Jeremy was still out of town. Usually we go out to dinner, but it was fun a relaxing in our garage. I would have had it out on the deck, but it was kind of raining and I didn’t want anyone to get wet while still having good covid mitigation measures. (no photos! I took no photos anywhere.)

Sunday, I drove to Brooklyn to see my friend Lael on Monday (no photos either!). I don’t like driving, but the public transit options took too much time and lacked flexibility, unfortunately. I felt I was tight on time going back home. I needed to be home by Tuesday camp pick up because Jeremy was flying out at noon on Tuesday, I’d rather stress the actual driving than stress missing camp pickup.

I lucked out and had gorgeous weather the whole time I was there. I had a great time with Lael on Monday (2 meals + lots of walking + ice cream), but I also got to spend a good chunk of time by myself. Running across the Willamsburg bridge on Monday (6 miles) and 10 miles on Tuesday morning where I ran from my hotel to Prospect Park. I’m learning the type of trips I enjoy. I dislike sightseeing trips, I don’t like seeing tourist attractions. I love visiting friends. I like exploring neighborhoods on foot and running allows me to do that (I surprisingly went through the Hasidic Jewish neighborhood for at least 2 miles where I felt very underdressed. At least I had a shirt on, I generally run outside with only a bra in the summer.). I enjoy eating foodie foods when I’m with other people, but when I’m by myself, I’m content to find a grocery store and grab something quick and cheap without needing to tip.

And now I’m home. And we go back to the task at hand. Yesterday, I picked up Edda from camp, we had frozen chicken sandwiches for dinner with Isabella. And we went to bed and woke up today.

Oh well.

I’m a bit sideways right now, I’m actually heartbroken in a particular way. In between tragically and disappointed – but more towards the tragic, honestly. They (our waiver provider) decided to close down Edda’s aftercare in the fall. I’ve always relied on the aftercare to cover our “regular” working hours and it was a community for Edda to be part of. If an in-home caregiver left, I always had what I considered “core hours” covered. And they did camp-like things, cooking, crafts, movement, music. Before the pandemic, they were starting to go on outings. This is funded by a medicaid waiver that Edda qualified for when she was in middle school. Anyways, during the pandemic, they approved emergency measures that family members could sign up and get paid (when folks didn’t want other people in their home) and that virtual services for camp were OK as well. So understandably, people did do these things and it was hard! We did aerobics and music on zoom, like, really, wtf? And lots of people signed up to be paid to be with their disabled kids, because there was no choice. We didn’t because we were always looking for other people to be with Edda, but really, never finding anyone since beloved Kitachi left last summer. But just a couple of weeks ago, these “emergency” virtual and family as staff changes became permanent going forward. So the waiver provider has expanded – I think – virtually with parents as the caregivers and, really, the overhead/staffing of the in-person camp was not worth it in the end. There are many ways to be sad about this. I understand that our provider probably has hundreds of families as their clients and only 15-20 families at the after care camp. But does anyone think that virtual services are good with kids with disabilities? I guess it was such a small percentage of people taking advantage of the in-person camp, so in the end, who cares? Maybe everyone else loves having these services in their home. OK, best case scenario is that you are hiring someone to get Edda out into the community, but can you really put together a band, a yoga instructor, cooking plans, craft plans just for your own kid? I just imagine lots of families at home with their disabled kid, qualified for these services, and just sitting at home as we will be – I guess being paid is better than not being paid. Maybe I’ll sign up and get the $19 dollars an hour for being with Edda. Edda’s world is getting smaller. There are going to be fewer places for her to hang out. The adult placement is going to be problematic. I’m not sure I’ll find a program for her to go to during the days. Also! We’d been going to camp for many years, we didn’t know our last day was our last day. I didn’t get to say goodbye. Yes, there are other providers who do this work, I could switch providers, I guess, but are all the in-person camps going away? I’m not sure providers are motivated to provide an in-person camp anymore. It’s a lot easier to do virtual stuff.

Of course, this reframes the idea I have for my own life separate from Edda. I had/have an application in for a nurse practitioner program in the fall for which I have an interview on Thursday for. I was on the fence about the program, mostly leaning away, but with no steady aftercare for Edda in the fall, I don’t think I can possibly do the program. And then I think more expansively – ok, what if the adult placement in 3 years goes unsuccessfully and Edda is home with me during the days. How can I keep my/our lives forward-looking and rich and rewarding? What community can I place myself into and have Edda be part of? How can I keep my body/mind strong and steady so I’m not overwhelmed with what will need to happen? I’m so lucky to have a primary job where flexibility is great and it pays well and etc. I will forever be grateful for the job. I have the same deep-gut feeling I had when Edda was 2 and first diagnosed and I didn’t think we’d make it as a family and it was going to be a terrible, awful, sad life, but we made it to Edda’s adulthood just fine with lots of great experiences and memories. I know I can do it al least once again another 18 years, that’ll take me to 68.

When things like this happen, and I start to feel sorry for myself, I do try to remind myself that there are people who will help me even though it feels like there is not enough help to go around. And that I’m not the only person in this situation. I can get anxious about losing Jeremy’s help – that he’ll get into a bike accident or something.

It was Megan’s birthday on Thursday. I hosted a low-key b-day party on Friday night where I cooked my famous peas/ravioli dinner. Lol. We poured layered drinks and had ice cream cake and we worked on an at-home murder mystery puzzle that was fun.

Tianpei is staying a couple of nights here for a music audition and he performed a bit during dinner. Beautiful!

Jeremy is off on a bike ride again!

Weekend update.

I loaned our minivan to Vickey for their vacation (they needed to seat 6) and got her Volvo station wagon in return, which we took to Philly. Jeremy momentarily forgot that we were sans minivan and he kind of despaired because we need to bring a lot of stuff even though we’d be gone only a few days. But packing a vehicle tightly is one of his favorite things and, of course, we all fit in the station wagon just fine.

We went to Philly to see Eric Marsh at the Rett Clinic and also to see Bob and Katherine and Emy who would happen to be in town. We needed to bring Elka – everyone wanted to meet her – and also, I’m reluctant to ask someone to dog sit as she still has destructive puppy habits. We couldn’t leave her in the car for the duration of the appointment, so I found a dogsitter through rover.com to watch Elka for 4 hours while we were at the appointment and eating lunch afterwards. I feel like I look a little orthodox in this photo while I’m waiting for our dogsitter to show up.

The visit with Eric was great. He has a wonderful bedside manner and Edda really likes him. We are going to start a slow wean off of Keppra. There is a new drug that will go on the market in December/January, so we’ll do a follow up appointment in Feb to get her started on the drug. Dr. Marsh says maybe her repetitive hand motions would quiet, she may have some increased alertness and responsiveness and also some new vocalizations were reported in the trial. We’ll see. I’m semi-excited. There is a side-effect of persistent diarrhea, which could be an issue, but maybe not. Edda is on the constipated side, so that could help us out. We can try for 6 months and see if there is improvement. We had lunch, Jimmy Johns (one of my favorites) and excellent pizza and we picked up Elka from the sitter with a positive report card (no peeing in her apartment, which is what I was worried about) and headed to see our family.

Bob and Katherine are well. We had a nice time together. This is Edda’s set up for bed. This is why we travel heavy.

We went to visit a college classmate of Jeremy who works for a non-profit called Natural Lands – a very nice outing.

We attended a meeting of B&K community group where discussion was held regarding hosting parties in the fall.

It was a beautiful day outside.