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.

Angry.

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.

Kisses!

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.

Sabbath.

I thought the weekend was very nice, lots of activity, but evenly spaced and a variety of energy levels needed for each one, some social, some instructional, some outdoors, some indoors with different groups of people . I spend a lot of time trying to balance my time/energy. I like doing lots of things, but I can’t do too many things! So when I went to bed on Sunday night, I was like – a nice weekend, not too tired, I should be ready to go Monday morning. Well, Monday dragged – it was Edda’s first day at camp and I rushed around making sure drop off was ok and then I couldn’t keep the day moving at a good pace, I wanted to nap, to eat cookies, to pet my dog. As I get older, I really need one day a week where there is literally nothing scheduled – a do-nothing day a Sabbath. Pre-pandemic, I worked almost every day of the week, and maybe even in the depths of the pandemic I did that too because there was nothing else to do. But I need a day now where I can wake up and not be obligated to meet anyone or do anything. I usually end up doing something, but hopefully at 1/3 speed.

Elka has goop in her eyes. It was on only the right one for a while, but then it went to the left one. Jeremy took her to the vet and we got some drops which Jeremy couldn’t tell if it was necessary or not – because, of course, the vet is going to sell you eye drops. Anyways. She is less goopy today which is good.

Weekend update.

I had a hard shift on Friday. I had to call my first STAT team ever. Every morning before I go to a shift, I pray to God (even though I don’t believe in God) please let my patients all be stable. They can be mean or weird or need to go to the bathroom every 5 minutes, but please let them be medically stable. God was paying attention to something else on Friday. My patient had had a pretty standard surgery, but they had had some issues in the night and seemed to be doing kind of ok when I took over their care, but by mid-morning, it was clear that there was some internal bleeding happening at an alarming rate. I had a new nurse orienting to the floor with me and I was like – this is going to be a very interesting first day for you. I called the charge nurse and told him I needed a STAT team, and they were there within a minute (a room crowded with people) and then I got flustered and anxious and gave report many times – but everyone else was calm and collected as if they did this all the time (and they do do this all the time) and within 30 minutes of calling the team, I had transferred the patient to the surgical ICU and then I was exhausted and sat down to eat a cookie that Jeremy packed for me for lunch and saw that R v W was overturned and thought that when it rains, it pours and that it was a terrible day. I had a 2nd trimester abortion in Texas in 2000 – a lifetime ago. At dinner, I said to Jeremy that our abortion clinic is closed now (it might have been closed a long time ago, I don’t know, Texas has been restricting abortion access for a long time) and he said that if it happened now, we’d have to fly to California which we would have done then – but lots of people can’t up and fly to California.

Saturday was a nice day, we had Edda-care in the morning, so I took Elka to the dog park and late morning, Edda and I met up with Grace. A graduating senior from the local high school who is working at Edda’s camp and lives on our street and is driving! So she’s going to be Edda’s transport to/from camp this summer.

Jeremy’s friend Dan drove to our house in the morning and the boys went on an extended bike ride during the day.

Early afternoon, I took Edda and Elka to dog training. Now they are expecting Edda-in-wheelchair to come, so they opened the garage door so we can wheel right in. Edda fell asleep. Elka does OK at training. I mean, she is trainable and is clever and is not the worst dog in the class and does all the exercises, but she spends the entire time looking sad at me. I try to tell her, training is fun! It’s fun, fun, fun! But she is really having none of it.

After dog training, the boys came back from bike riding and then we had an early dinner and talked a lot. It was a lot of fun. It was a good day on Saturday.

On Sunday, I ran for 10 miles on the treadmill. I’m still training for this marathon – mostly on the treadmill. I kind of prefer the treadmill training these days, it’s very convenient and predictable. The workouts are precise and I tend to not overextend. In the past, on the track or the road, Paul would write a workout and I’d often try to better the time. This is very fun, but also very exhausting over the weeks/months of training. You can get into a bad feedback loop where the workouts get too hard too fast. And then you are too tired to keep going and then you have to stop and take many naps all the time usually 3 weeks before a race when you are supposed to be peaking. With the treadmill, there is none of that – I just do exactly what is written and then I hope I can sustain a smooth buildup for months. Is ten miles on the treadmill boring? It’s a weird thing. Yes, of course it is boring, but it’s also freeing in a zen sort of way. You don’t have to concentrate on direction/pace or weather. You just kind of set it and let the time pass. After a while, it just passes and you are done with the run.

Then I went to Camp JCC open house. Isabella is Edda’s counselor again which is wonderful and she is going to help with aftercare this summer. I had this idea that I would just drop off Edda’s supplies and just say a quick hi from Edda, but I stayed almost the whole hour. Lots of people say hi to Edda, lots of people asking about Vince (he was so great last summer! is he back?), I got to see some other families. It was nice.

In the afternoon, I went to see Top Gun: Maverick with Megan and I had a great time. Megan was born the year Top Gun came out, so she prepped by watching the original the night before. It’s almost exactly like the original Top Gun, a very predictable, but very satisfying movie experience. Kind of like mac and cheese. Tom Cruise could still outfly all the best young pilots. Haha, lots of fun.

Charlotte & guardianship.

Charlotte passed away about a week ago now, last Sunday. She was kind enough to officiate at our wedding in 1998 and for that gift, I will always be grateful because my marriage is the best thing I have. For a long time, I felt like Charlotte was Bob and Katherine’s friend mostly (they’ve known each other for a lifetime before I met Charlotte), but, over the years, I felt like I could count Charlotte as my own friend as well. She showed up in Singapore immediately after Edda’s diagnosis when I really was in no position to interact with the outside world and she held my hand. I was so young then, I did not understand many things, including what was happening to my little family, but I think Charlotte kind of understood and helped me through that terrible time. One of my fondest memories of her was in 2017 in NYC where I spend a whole afternoon with her by myself on the High Line and then I went to dinner with her and friends and I had the best time! Like the best time! We laughed and gossiped and ate good food and luxuriated in each other’s company.

Edda’s guardianship is done! We went to court on Thursday and it was NBD. The school system, every year, has a series of presentations for special needs parents about navigating the transition to adulthood. One of them was the guardianship presentation. The transition person at Edda’s school gave me great advice and said – try to go to them every year and kind of pay attention and by the time you need it, you’ll have heard it a few times over. So I listened to the same presentation every year and when it came to file the paperwork, I kind of knew what to do. The presenter was from the Family Law Self-Help Center and there was a particular point where the paperwork gets a little sticky, and he said in each presentation – come to the self-help center and we’ll help you. So I got to the sticky part and I went to see him and only upon registering did I realize that it was a low-income self-help center, but I was already there and so I waited and I saw the same lawyer who did the presentation and he helped me extensively (like 30 minutes) through the sticky part (which is what paperwork exactly needed to serve interested parties (which included Vince who when his friends asked what is your mom doing? he would answer cheekily, oh, my parents are suing my sister)), and I was kind of rushing him a little because I was self conscious that I was taking the spot of a low income person in need of legal aid, and he said, yes, it’s income based, but we help everyone who shows up once. So I got my one visit and filed all the paperwork and it went off without a hitch. On Thursday, there were about 4-5 families filing for guardianship at the same hearing and we were the only ones self-representing. (Edda had her own court appointed lawyer – Edda was home in the care of Eliana. I will have to pay Edda’s lawyer’s fees.) Huzzah! There was one young lady who had the hearing exactly on her 18th birthday, which was impressive to me – it was the only thing I could have done better, to have it actually on Edda’s birthday (Jeremy said – that’s what they paid the lawyer for, we escaped the lawyer fees, but it was three months delayed). The entire courtroom sang happy birthday to her and it was very, very sweet. It reminds me that I’m not alone on this path. I mean, I’m never alone, but sometimes it feels like I’m alone.

Winter, fan, hike.

We are still living in cuteness here.

Winter is not a summer dog. She found the AC vent on the floor and Eliana set up a cooling fan. This dog is like – where is my iceberg?

The wordle was very difficult for me today. This took me about 4 hours, playing, thinking, playing, thinking again.

I went on a morning hike with Kristin! :). on a not-too-hot-day, the day after the longest day, now the days are getting shorter. This was Elka’s first long-ish hike. She did great – 3 hours, more than 5 miles, met other dogs, went into the water.

Molly, Winter & Elka.

On Sunday, I went to Molly’s unveiling which was a small ceremony at the gravesite. It was the most beautiful of early summer days and Molly’s grave is next to her grandmother’s and under a beautiful shade tree and the service was touching and we didn’t want to leave.

Eliana got a new puppy on Friday – appropriately named Winter. She’s bringing the pup to our house while she helps with Edda. There are two puppies in the house!

They get along well.

We nicknamed Winter – Snowball. Elka remains Goofball. So it’s Goofball & Snowball.