Vincie is in Portland for the weekend with his Coffee Center research group attending a coffee conference (who knew?) and presenting a poster. We were talking a few weeks ago about what there is to do in Portland. Maybe Powell’s, the renowned independent bookstore? Or the Pearl District for nice dim sum? But instead we get a late night text of his right ear sporting new piercings. Haha. Did I tell you when Jeremy and I fell in love, he had seven earrings in one ear and a shaved head and I also had a shaved head? We have no photo evidence of this, unfortunately. lol. I just want to say the we were ahead of the times. He’s wearing a mask! Interesting. Did the piercing place want him to wear a mask? Did he want to wear a mask? Unclear.
It was the most gorgeous spring day yesterday. Jeremy biked to work and I pulled this photo up from our shared photostream, but I realized it wasn’t his bike. Is this a bike pulling a trailer? I think it is. Jeremy left at 6:30am and got back at 10:15 pm (he was still in DC at 8 pm which is when I thought he would get home). He biked home in the dark on the C&O canal which freaks me out a little bit, but he made it home and then we couldn’t sleep (this is what always happens when someone comes home late) and we were up in the kitchen at 11:30 at night eating leftover Chinese food and rehashing the day. Elka was very confused, nosing around for food herself.
I luxuriated in a day in the house by myself. I honestly don’t know why I love having the house by myself for hours, because when Jeremy is working from home, we have completely different work areas and we have such a low level of interaction – we don’t even eat lunch together most days, maybe it’s just a taste of before times. But I was in a great mood and got lots of things done.
A lot of things regarding Edda turning 18 are slowly resolving-ish, like she got approved for her Social Security (this took just about a year) and qualified for full adult services when she turns 21. Her aftercare seems steady, though everything still feels tenuous to me. I’m finally starting phone calls with the transition teacher at her school to start the two year process of moving her from school into her adult services situation. Things are still a mess from the pandemic, long waiting lists and full programs and staffing issues, but because I’m in a better place mentally, I feel like I can manage these things without too much trouble. Sometimes I complain that my life is boring, but I’m grateful for the boring life at times, because one knows that life can be exciting, but in the bad way – a lost job, an accident, a tragedy.
RSRT is going to start enrolling children in a gene therapy trial in the fall. Megan, Edda’s teacher, and I were at dinner a few months ago when we talked about what if Edda’s genetic error was erased right now and she had a fully functional genetic material. Could she learn to talk? To hold a fork? Would she be mad? or glad? Or would her brain be overwhelmed? After decades of missing out so much. So much of her body is deformed from not being able to move in the typical ways for so long. Her mouth has been unable to form words for a lifetime. It would be interesting. I wonder what would happen. Perhaps a nice problem to have.
Vince usually asks for very little. For example, he asked for a Costco membership when he turned 21. He really never asks for the latest phone or a new computer or Lego set or video game or airplane tickets or help paying for parking tickets or any random thing-y unless he really needs it and then oftentimes he hesitates to ask. Because of this, both Jeremy and I tend to feel indulgent towards him with little ridiculous gifts and, in turn, he indulges us by participating in our little material desires. Jeremy’s favorite color is orange and there is one bike tire company that comes out with their “color of the year” tire this year it happened to be bright orange and he couldn’t resist buying them for Vince. (I asked Jeremy why he didn’t buy them for himself and his various bikes and it’s because they would be a step down from his tires, but a step up for Vince’s bike in terms of bike tire performance.) Vince obliged by promptly installing them on his bike and snapping a quick photo for us. lol. ridiculousness.
Jeremy went on a long bike ride on Sunday. We are having beautiful days!
Elka is very lucky. Each time Jeremy goes on a long bike ride outside, he rewards himself with ice cream from the shop down the street. He takes Elka with him and she gets a pup pop which she enjoys and devours quickly. Sometimes (rarely, really) when they are out on a walk (without the long bike ride), Elka can persuade Jeremy to go to the ice cream shop to indulge for no other reason than they both love ice cream.
I feel good these days, I’m enjoying feeling happy. When I was younger and went on antidepressants, I often struggled with the feeling of like – am I the real me? when I’m on medication. Or am I the real me when I’m off the medication? But this time, I just don’t care. I’m grateful that the meds pulled me out of my mental funk. I’m old. I just want to enjoy my life. I want to snuggle with my family and feel content.
I hiked with Kristen on Friday – it was a glorious morning! We walked for about 2 hours in the woods together. I have never gone walking with Kristen in the spring, when everything is growing and leafing out. I get excited about spring, but not as excited as Kristen who took photos of every bloom and identified so many plants that I’ve seen forever, but never knew the names.
Kristin is inspiring me to get a nose ring. Which I might do. I talked to Jeremy about it at dinner last night and he laughed and asked why he was laughing and he said it was because it was something that I like to talk about doing, but never would actually do. Haha, I almost made an appointment right then and their at our local piercer, but then they have a big warning sign on their website that I wouldn’t be able to swim for three months. That might be challenging. Maybe it’ll be a winter thing.
Elka living her best life. Her nickname is still appropriately poopyface. I spent the entire walk prying poop from her mouth. Horse, goose, deer, small, large, firm, squishy. It didn’t matter, she grabs them all and holds them gently in her mouth so proud of herself.
OK, let’s wrap this up. We had a light brunch with other out of town guests and then headed to the Vizcaya museum which reminded me endlessly of Encanto. Just waiting for the house to move and bring me a drink. I had to buy a hat at the gift shop here, I’d been going around the Miami sun without a hat all weekend and I couldn’t take it anymore.
Someone fancy had a fancy folding phone! Look at that. I had never seen that before. Samsung.
Jeremy was not idle during the weekend I was away. He and Edda went out with the DC Martins on Saturday night to celebrate Gene and Bette’s 65th wedding anniversary. That might be a stretch goal for us as Jeremy would be 95 and I’d be 91.
Sofie texted me on Friday if she could use our backyard for an egg hunt on Easter sunday. I said of course!, but I forgot to mention it to Jeremy. And Sofie didn’t really tell Mike either – so Ning and Brian and the baby kids showed up and hunted eggs in the backyard and Edda and Jeremy joined them and then Jeremy (who is good at this) threw together an Easter lunch for 8 (though one was not yet onto solid food) with what was in the fridge and pantry.
So Rachel can be a low-information friend, meaning, she doesn’t quite tell me what is going on or what is going to happen. I think this can be a cultural thing as my family can be a need-to-know-basis (my parents often go to the hospital and don’t tell me until everything is resolved) and Jeremy’s family will go into deep analysis of logistics of very small things, like comma placement in emails. So as I slid into the car on Friday morning at 4:30 am with a strange driver, I did not question it. Was it a friend? An uber driver? An additional guest flying with us? I did not know and I did not ask. And Rachel had insisted on sharing a room with her at the hotel, but I was not quite sure if we were renting a car in Miami or if I was going to be able to check into the room while she was at the rehearsal. Was I expected to attend the rehearsal? I was not sure. Also, I had at some time been under the impression that I was supposed to attend the rehearsal dinner (usually reserved for family), but, again, unsure. This was a little problematic because usually, I have no problem wearing the same dress to all the weddings I’ve ever been invited to, it was not possible to wear the same dress to three different events on three consecutive days with the same people (there was a morning-after brunch as well). I was also under the impression that Pat had local family and was going to be staying with them. Anyways, why did I not ask about clarification of these things? Well, again, it felt very culturally familiar – Rachel is about 10 years older than me and calls me her little sister and kind of bosses me around. So I was enjoying watching how things unfold. And one of the unfoldings was that as we were checking into the hotel without Rachel because she was at the rehearsal, I realized that there were two beds for the three of us (Rachel, Pat and me) and that since Rachel was the mother-of-the-bride, naturally it meant that she got the bed to herself and so I spent the weekend sleeping with a woman I had never met before. It was great that Pat and I got along so well that on Friday night, while the rehearsal dinner was happening, we just got a quick bite to eat at the Whole Foods next door to our hotel and we changed into PJs and were in bed by 9 pm (together, of course) – her planning out the next day on her iPad and me trying to fall asleep because I had gotten up at 4 am and spent the day on the beach with the sun leeching energy from my body at an accelerated rate. At 10 pm, Rachel bursts into the room with her other non-bride daughter, the boyfriend of said daughter and Joon, the brother-in-law to find us 2 PJed women in bed together. I’m not sure what they thought of that – I was like – Rachel, you need to send a text! I need to at least get a bra on (though I told Jeremy, no one wears a bra in Miami, so I guess it was OK). We made some introductions and chatted for a while (Pat, bemused, sat in bed the whole time, nonplussed). So then everyone else left besides Rachel, Pat and I and that night, before the wedding, was hilarious and funny and really, was one of the highlights of the wedding for me. We made sure all of Rachel’s outfits fit, that the Spanx worked it magic wonders and we fell asleep at 11? 12?.
The next day, the women needed to be at the venue at 10 am for a 6 pm wedding (!). I have no idea how hair and makeup can take 6 hours, but it does apparently. We went to breakfast with Rachel’s brother and wife who came in from New Jersey.
Joon wanted to spend the day resting, so Pat and I were let loose on Miami by ourselves. We went to Wynwood Walls by taking the free people mover and walking.
Pat loves to try restaurants, but actually can’t eat that much solid food because she has issues with her mouth from a biking accident years ago, so we ate “lunch” like three times – each time ordering drinks and only one dish which sometimes was just an appetizer. At the first place, we ordered a pizza for one, she had one slice and I had the whole rest of the pie. The second place we ordered only fried pickles and sangria (for me) and cold brew (for her). So I did drink a lot (based on my baseline) on this trip and I did not feel tipsy in my usual way after half a drink and I chalked it up to weak drinks or the heat or that I was eating a lot. But I think it was weirdly dampened by the Effexor.
Between the restaurants, we went to the paradox museum which was a funny optical illusion museum.
Look at this gorgeousness from the bridal suite.
We got to the wedding and here we are pre-wedding in the courtyard adjacent to the outdoor space where the ceremony and reception were going to take place. I stopped taking photos at this point because it felt like everyone else was taking photos including a very professional three-person crew with large cameras slung across their bodies. It’s a bit ridiculous to stop taking photos, but I did.
Anyways, it was a lovely ceremony and dinner (Rachel was like – OMG the servings were sooo small! Everyone ate everything! In Asian cultures, at weddings, one must always have too much food, so no one leaves hungry – if everyone finishes everything, it means that you didn’t provide enough food. I told her it’s the opposite in the US, the more expensive the food, the less you get of it.). I had heard whispers of a surprise at at the reception and boy, it was it a surprise. Here is the video. Mind you, it was the bride’s idea for this entertainment. I bet this has never happened at any wedding you’ve gone to. It was, honestly, a lot of fun and fun to party in Miami. I love weddings because it reminds me of my own marriage which I’m so happy to be in. To a lifetime of happiness!
I took a very early morning flight on Friday to Miami to go to Rachel’s daughter’s wedding on Saturday night. I had a wonderful time – full of quirky experiences and nice memories. Rachel is a nurse coworker of mine. It was going to be a lavish celebration and Rachel worked so hard to make it happen for her daughter. We travelled with Rachel’s late husband’s brother Joon who had flown in from Korea for the occasion. He’d been in the states for about 4 days already.
It was a 7 am flight because Rachel needed to be in town on Friday morning at 11 to attend the wedding rehearsal. Rachel’s best friend Pat, who I had briefly met here in Maryland a few months ago, has family in Florida was driving in from her family’s house to meet us at the airport. We then proceeded to drop Rachel off at the rehearsal and as she flew from the car towards her anxiously waiting daughter/bride, she yelled at Pat and I – take care of Joon today for me! And Pat and I looked at each other and then looked at Joon and we laughed and settled in to the afternoon. Pat and I, not really friends to start off with, spent the next two days together roaming around Miami. We actually get along well as travel partners – the pace, the things we wanted to see, the places we wanted to eat, the amount of money we wanted to spend all lined up very nicely and we had a good time with each other. Joon, joined us on that Friday – to which I used Google translate a lot. Like a lot. I have no idea how well it worked, but Joon seemed to understand various things like – we are going to the beach and we need to buy Spanx for Rachel. Pat wanted to head to South Beach and we Ubered there after checking into the hotel and had mojitos and walked along the beach.
Here I am on the beach! The weather was perfect. I had the first of many cubano sandwiches. Everyone in Miami has a designer purse, beautiful breasts and tiny dogs which they move around in strollers. If I lived in Miami, I might have to purchase those things.
We walked down the main shopping strip in South Beach looking for the Spanx (which we did find) and Pat is a coffee fiend (she likes to plan the next cup as she is finishing the last cup) and as I have been trained by Jeremy to look for coffee while on vacation, I was happy to hunt for coffee with her. Also, one of the small pleasures on this vacation was interacting with handsome young men in various hotels/restaurants/bars which I never really get to do when I’m at home because while Jeremy is still very handsome – he is no longer young. Don’t worry, all the young men who smiled at me only did so because I reminded them of their mother.
I enjoyed introducing Joon to fresh coconut juice. He is a funny man (as far as I can tell, the google translate could only do so much).
Spring break is over this morning. After a rough start to it, all of us, had a very nice spring break and I think we all feel rested and rejuvenated. Jeremy was a bit upset because we didn’t actually “plan” a spring break. I had a bunch of travel which was to happen right after spring break and I didn’t want to take any more time off of work, but this travel did not involve Jeremy, so he was determined to do a spring break vacation with just him and Edda and his father, but that became a little ridiculous because Bob was getting busier with his new job, the meeting that Jeremy wanted to go to could be done by zoom, Edda had a doctor’s appointment and Mike & Sofie really needed someone to look after Jojo, so there we were, at home with no plans.
What rescued us was a few things, Edda’s aftercare ran a camp every day during spring break from 12-6 which made Edda very happy, I’m not sure I’ve seen her so consistently happy each day. They had aquarium day, bowling day, pizza day, movie day, planting day and the weather was mostly superb. Look how happy she is at pickup! The other thing that rescued us was that Jeremy did take a lot of time off and kept that time and spent it on himself – doing long bike rides and keeping work to a minimum-ish. And the last thing was that I did travel last weekend to Miami – which really made me very happy and feel adventurous and even though I lost a lot of sleep, I feel quite refreshed and rejuvenated. I feel good (finally!), not too moody or upset or rage-y. All good things.
Last Thursday, we had an appointment at CHOP to get the prescription for Daybue. Since I was taking care of the doggies and was travelling the following day, Jeremy did the appointment on his own with Edda. A day trip with a short lunch with Bob at the downtown Philly Shake Shack. So everything went well at the appointment, including figuring out how to log into Edda’s account – after she turned 18 (Vincie too, but it’s easier to ask him to do it), all her medical accounts shut down access to us, so it’s been a journey to get access to them, especially at large-ish institutions, but Jeremy managed to get the password reset and hopefully the drug refills will be more straightforward now. Edda’s dose is 60 mL twice a day, at $20 a mL, this would be close to $900,000 for a year’s dose. Did I tell you that my dad woke us up calling at 11 pm when he found out how much it cost? Anyways, I think the drug company wants us to take it, so they have a team to duke it out with the insurance company. They said the paperwork will start on April 17. Who knows when the drug will start shipping to us. We are cautiously excited – though this morning, as Edda was smiling at breakfast so broadly after a great spring break for her, I kind of didn’t want her to try it because she’s in such a good place right now. Her poor brain! Anyways, it’s a complicated feeling.
In front of Ben Franklin. The original list-maker!
I used to cut Jeremy’s hair before we had kids. I did it very slowly and carefully, oftentimes taking an hour or so. But then we had kids and he found a barbershop he liked and had his hair cut there many, many times. But then during the pandemic, I went back to cutting his hair and since we all cared less about how we looked and I practiced more, I can give him a good haircut in about 15 minutes. I thought he’d go back to the barbershop after everything opened up and he did a few times, but he was still wary about the masking and possibility of germs, so I went back to cutting his hair for him. Now I think he might never go back to the barber and I’ve written it down on my list of things to do that repeat every 6 weeks. So at the six week mark, I asked – hey – it’s time for a haircut, but he demurred until 8 or 9 weeks until he was clearly shaggy and then we proceeded with the haircut. So my question is – should I leave the repeating to every 6 weeks to remind him (which would make him look clean cut all the time?) or mark it at every 8 weeks? Or should I just wait for him to ask? All possibilities.
Elka on a dog walk with two sticks perpendicular to each other to form a cross to ward off evil spirits.
