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I didn’t really see Vince until 5 pm on Saturday afternoon because he came in late on Friday night (he came into my bedroom to give him a hug) and on Saturday morning, I went kayaking, so I gave him a kiss on his sleepy head and headed to the Potomac for my lesson. This time I managed to bring my phone and take three photos of my “rapid”. Can you see it there? It’s like 6 inches tall and probably could have been traversed more easily on an inner tube.

I had such a nice time on Saturday. I love being out on the water, it’s a good mix of meeting people and being on your own. (I met the CEO of our local food bank – I had wanted to volunteer for the call center earlier this year, but everyone seemed to be volunteering from home, but he insisted that I try again, because it’s changing to more in person.) Physically, it’s a mix of endurance, strength and flexibility. While I do have aspects of the required physicality, I’m quite bad at putting them together to kayak well. There are people who are quite good (the best person, I found out is an experience canoeist) and just understand their body well. There are people who are beginners and kind of tentative and careful and focus well and execute well. And then there is me, I want to try many times, because I don’t have a boat or very many opportunities to try with an instructor right there – so I tried many times and I “fell” many times. I learned to rescue myself and I learned how to have other people how to rescue me. Kayaking is very much like skiing or snowboarding with the leaning or catching an edge. There is reading the water and deciding on a line – the canoeist was the best one because he’s read the water the longest and was trying (along with the instructor) to teach me – look at the water – do you see the V? go to the top of the V? I saw nothing except flowing water. Then there was the instruction – do you see that big rock over there? There were many rocks, you know, over there.

Of course, the instructor, Nate, who I like very much, said the thing that is true about everything – you are a good athlete, you are just thinking too much and not relaxing. Relax. Work with the current, not against it. To which I was like – this is the story of my life. Work with the current, not against it. Relax into it.

Vince is home! He came home Friday night and Jeremy took one for the team and picked him up at the airport close to midnight. He’s home for only a week and then back to California to do a summer research internship. This is a program funded by the NSF at many universities across the country to encourage students to go to science/engineering grad school. Everyday during the 9 week program, there is a presentation about what grad school is like, or how to prep for the GRE, or how to write a statement of purpose. They are doing a good job so far because Vince wants to go to grad school which, if you had asked me if that was a possibility when he was 16, I would have said no way. He knows his faculty advisor and the grad student he’s going to work with. He just needed a suit.

Jeremy and I spent some time discussing the necessity of a suit because, while the list of “nice things to wear when you give a presentation” did include a suit, I was like – no one, especially no one in SoCal wears a suit to anything. Jeremy rebutted and said – suit is on the list and I wore my own suit just a week ago (though I did wear shorts because it was a zoom suit). Actually, it’s also because for the women, it did not say a pantsuit or a blazer/matching skirt and because the women were not up to the suit level of dressing, I didn’t think Vince needed to either. Anyways, this whole thing was solved when Kappa (Bob aka Kappa and Katherine aka Kiki arrived on Friday night for a quick visit with Vince) was so thrilled to hear that suit buying was on the list of possible activities, that he took over that task and shuttled Vince to go shopping for a suit and two hours later, the suit was purchased and in for slight alterations and it will ship to him in Irvine after the tailor is done with it.

Bob and Katherine were in town for less than 48 hours and the visit was very nice – low key and enjoyable. We had dinner on Saturday night at A & J with Louisa and Leon. We’ve never been to A & Js for dinner and we were surprised to find it not very crowded and could seat the 8 of us without a wait.

On Sunday, we walked to Rockville Town Square with the dogs (Jeremy pushed Edda the whole way there!) and had an outdoor lunch which was lovely. The air quality wasn’t the best, so Jeremy took a scooter home and picked up the van to come bring us home.

Actually, my most triumphant thing of the weekend may have been spending a couple of hours fixing Bob’s email system. Having him ditch apple mail/calendar and switching him to gmail and google calendar. The apple based email system wasn’t syncing correctly and he’d delete certain things on his phone and it wouldn’t delete on the computer. It was a mess. The first hour was spent trying to get his existing system to work, but then giving up and the 2nd hour was spent migrating to the new system. (My life is so boring. I know.) But hopefully it is less of a mess now – so go send him an email! He’ll get it on his phone or his computer at the same time.

We hosted Sunday night dinner with the DC Martins. It has been a long time since Vince has seen them because he didn’t see them for Thanksgiving because we were out of town. And we had the covid Christmas where we saw no one.

Edda’s last day of school was on Friday. And now begins the summer. It was a nice year for us at Edda’s school. We are very lucky to have had a 3 teacher team in place for many, many years – through the pandemic. Without them, we would be lost.

We are, unfortunately, having some trouble with Daybue. Edda usually has one night time seizure a week while being on Keppra and Trileptal. This week, her first week on Daybue, we saw a seizure almost every day. Monday and Tuesday were nighttime seizures. Wed, Thurs and Friday were daytime seizures. The daytime seizures are very unusual for Edda – we haven’t seen then in over a year. Yesterday, Saturday, we were out for dinner and Edda seemed to have that seizure-y aura about her, but we didn’t see one occur. Anyways, we are holding at 1/3 dose for another week. The specialty pharmacy said they knew seizures were a side effect so it wasn’t surprising, but they had no data to indicate whether it is a long-lasting side effect or if it fades with use of the med. We have an email out to our neurologist at CHOP, but haven’t heard back yet. So we are holding steady. Her poop tho, is completely fine.

Eliana is a very entrepreneurial person (she’s Edda’s weekend caregiver) and always has lots of business ideas to try out. She’s trying to be a home organizer/declutterer person. I always try to be supportive to Edda’s caregivers so I hired her to help us organize some spaces in the house (and so she she can have some photos for marketing) with the understanding that we may not be able to maintain her level of Mari-Kondo. We are actually kind of messy, disorganized people and we are always trying to be better, but we fail all the time. (This is also why we can’t have nice things.)

So organizing the house is a tricky thing because I know Jeremy, even though he is a very sweet person, does not want anyone organizing his stuff. He has strong ideas about where things go which he painstakingly tries to explain to me so I can follow the rules (cheese in the bottom drawer, yogurt on the top shelf. Take eggs from the left carton and move to the right carton, etc.) – which I agree are reasonable but are not the way I would organize the space (I often mess up) – so his spaces like the garage, the kitchen/pantry and his side of the closet were off limits to Eliana. So I let her organize various bathroom spaces and my side of the closet.

This is under the sink on the first floor. (Jeremy didn’t even recognize it as part of our house, when shown the photos)

Before:

After:

My closet before:

After:

After Eliana organized my closet, I showed up to bed in my Peanuts branded pajamas which I haven’t worn since before the pandemic. Jeremy looked at me and said – oh! real pajamas. I said – I have no idea where my favorite pants are anymore now that Eliana refolded everything and I don’t want to mess up the neat piles. (My favorite pants are these cheap Champion sweatpants which I have mended the crotch at least 3 times that I wear every night to bed and every day until I work out at 3 pm through the whole entire pandemic and even through to today, I wear them like 18 hours everyday). Jeremy was like – thank God you can’t find your favorite pants anymore. They are not good pants.

I spent ten hours this past weekend learning how to white water kayak in the Potomac River. This past winter, I signed up for a month of lessons through the organization that put on the winter rolling pool sessions of which I attended three. This weekend was a two-day group lesson with about 15 people and 3 instructors and I had a great time even though I am so sore all over my entire body when I woke up this morning.

I love things that put me with new groups of people. Nursing did that and this does it too. It’s a little bit expensive and a little bit adventurous, so I got introduced to a bunch of young professionals, pre-kids who are rugged outdoors people. They argue over the best pizza place in downtown DC. They talk about moving to different places to try out different cities in this young-person kind of way. It’s very nice. The instructors are all my age though all male. I am very comfortable in the water, but I do not like to take risks. So I’m not ambitious in the sense that I don’t ever want to do dangerous things in the water, I just want to have fun. And I got to do that, I got to flip my kayak upside down in the river and re-right myself. I got to go on a rope swing and cannonball into a river. I got to learn to do S curves and paddle upstream for like a quarter of a mile (quite a workout) and while far from the best in the group and often times bringing up the rear, I could decently keep up without any pain in my body and I was so grateful for that.

I really loved this weekend. I hardly get to do these types of things. I’ve run alongside the Potomac for a decade and seen boater/kayakers from the trail, but I’ve never been in the water. It feels like getting to know a friend better, you know?

We got past the first hill/concern with Daybue. Edda seems to take it just fine, at least 20 mL of it. She is pretty good at refusing things she does not like, but it’s been fine so far. No poop yet – firm or loose to report. We’ll keep you updated.

We woke up this morning to hazy skies from the fires in Canada. Air quality is very poor. Jeremy broke out his n95 mask – all purpose now for the modern life of pandemic and fires (otherwise usually referred to as the apocalypse. just have to be on the lookout for zombies), for both germs and soot? ash? I’m not sure what is making the sky hazy.

On Monday, when the air was clean and glorious, Edda’s class had their end of year picnic. Mr Pat makes the best slider sandwiches and Ms. Jackie make a delicious variation of tres leches cake.

It was here that we told the teachers about Daybue and the predicted poop. If we can get Edda to drink it, it’s actually a great time to start because her teachers won’t see her for the summer and in the fall, when they see her again, they can see if there are any changes to her demeanor/behavior that we might not notice on a day-to-day basis. I’m generally a pessimist about these things, I did listen to part of the video that had parent experiences who kiddos were in the clinical trial and had a positive experience, I’m not a huge fan of anecdotal evidence and I felt the kiddos were not quite like Edda – falling on both sides of her – much more and much less disabled that Edda, but I’m willing (and hoping) to be surprised. I have in my mind what I’d like to drug to do for Edda – well see if that happens. We tried giving her metamucil this morning as the first step in the poop protocol, it is super disgusting. I had no idea. She had a little bit. Haha! It’s starting out great.

My friend, Kristen, is really into paddleboarding and introduced it to me last year. So I asked for a paddleboard for Christmas and we waited until the weather got good to go together. Normally, I’m very reluctant to buy equipment for low-use hobbies because I’ve let so many things just sit there unused in the past. But in my middle age, I’ve decided to try to let it go a little. It’s not as if I’m buying a horse (which means a barn) or an actual yacht (which needs a marina), it’s hard for me to buy paddle boards, guitars, etc knowing that some of it isn’t going to be regularly used in the end. But I think in doing so, I’m also closing off various interesting possibilities in my life.

So our first outing was supposed to be yesterday. I hadn’t even unboxed the paddleboard from it’s box! It was a beautiful day, but she had to cancel because her daughter got ill. I was disappointed and I didn’t want to go by myself, but Jeremy said we should go together instead just to try it out and see if Elka would be willing to be trained to ride on the board.

We drove out to lake Needwood and inflated the board with a hand pump.

Here I am breaking the board because I forgot about the fin I had just attached to the bottom of the board (don’t worry, we fixed it when we got home and I ordered the spare part from the company).

I floated out into the lake and Elka was delirious with happiness (maybe worry?) and wanted to be with me.

I pulled the paddleboard up to the launch and tried to convince her to jump on board a few times. She is totally willing and did it, but then promptly jumped off. Jeremy went home and ordered her a life vest. We’ll see how far we get with this!

I had a nice Saturday – I had a chance to watch Sofie play catcher at one of the fields that I played on as a middle schooler. I spent the rest of the morning meeting with a guitar teacher and attending a beginner group lesson. Then in the afternoon, I did some laundry and exercising. I’m looking forward to many summer plans, both big and little.

Exciting day here at the Martin-Lee household. The first shipment of Daybue arrived at the house via overnight FedEx in an enormous box with tons of ice gel packing galore.

The med is liquid – strawberry flavored – in 450 mL bottles to be refrigerated and not frozen. This is a key thing for Jeremy because when he packed the cat Ivy’s insulin for his cross country flight, the liquid froze, thus rendering it unusable. The insulin was worth $100 a bottle, this is Daybue, is worth $9000 a bottle (yikes! like really yikes!). We are not paying for any of it, insurance has approved it for a year.

We took the beer out of the drink fridge to make room for the medication. I think we’ll start next Friday. This next week, we are going to try to start a bowel routine to try and stave off the predicted diarrhea. Then start the med and we’ll wait and see if Edda gets, as I told her teacher, 10% more awesome. And her teacher said (very kindly), well that’ll be very hard to do because she’s already 100% awesome.