Month: March 2022

I’m a bit on edge these days, my mood is not good. But we keep going. A few nights ago – I told Jeremy – “I wish Edda…” and he thought I was going to say “didn’t have Rett Syndrome” but then I said “will someday not have lice.” And Jeremy laughed and laughed and assured me that he thought that was an achievable goal. I have conquered many lice infestations in my stint as a mother – almost always on Vince, but Edda’s lice has stymied me. I think I’m done, and then a few days later, I see tiny, tiny nits. These nits are too small for the comb if that makes any sense. I’ve combed a lot of nits in my life, usually, I can get them with my special comb (and I do have the special comb), but these are too small and slip by my metal tooth assault. And now that I’ve written these words, my scalp feels itchy.

I spent yesterday half listening to the Rett Syndrome Externally Led Patient Focused Drug Development Meeting. Hosted by both (IRSF and RSRT (omg! like they agreed on something)), it was a meeting for the FDA about personal stories of families living with Rett. So triggering honestly. So painful to listen to parents of kids who are between the ages of 2-7 (my painful, excruciating past). So painful to listen to parents with adult children between the ages of 24-54(!) (my future, which is unknowable and therefore, scary). I thought the meeting was well done and it’s available online if you want to see it. Painful in its own way were the parents who insist that their daughter was reading on grade level, or smart or somehow fully cognitively there trapped in their non-functioning body. This amorphous thing – “smart”. It makes me feel like I’ve failed Edda in some way. That if only I was a better mom, I would have unlocked the secret which would have revealed her smartness, lol. If you asked me what I wanted in my children before I had children, I would have said “smart” – like smart enough to win the Nobel Prize or if not that, then at least smarter/cleverer than me (honestly this is getting easier all the time, I’m getting dumber by the day, I can feel it.) Constantly, I field calls from Vince about how “smart” he feels in relation to his peers, suffering from a few points docked from his o-chem test – he feels “not smart”. But now I’m older and wiser and I want my children to feel like they are loved and supported and to have the strength to find their way in the world, those few points on an o-chem test are not important. They truly are not. I’m ready to be wrong on this, but I’ve made peace with Edda’s academic performance or lack thereof. I’m her mother, not her college admissions officer. Just because a person isn’t smart, does not mean we do not love them, care for them, spend resources on them. And honestly, if you think your daughter with Rett Syndrome is “smart” and “at grade level” and has opinions enough to cast a ballot on government issues or write op-ed pieces on the war in Ukraine, then, logically, when they are an adult they are able to consent to having sex with whoever they want (ugh.).

I’m trying to learn to be a regular person again. I went to a coworker’s baby shower. I got them some diapers and wipes and Jeremy made his famous butt rub chicken thighs.

Someone also always brings full fried fish which I love so much. This time, I ate at least half. Not the head half, but the tail half. (And not half the tray! there were like at least 4 fish in the tray!)

My favorite charge nurse and Pokemon Go lucky friend, Astra:

Mary saves my ass many days as my tech – I try to give her a ride to the Metro on days we are working together.

Yesterday, the city came by and picked up an old desk we got for free-ish from UT Austin surplus. That desk has seen us through the last 20 years and many, many moves. A beautiful piece of heavy furniture – they don’t make them like they used to, but it really is not a functional desk for the modern era. We started drilling holes in the top and sides for wires, we really didn’t need the filing drawers, nor the pull out slabs for typewriters and it was too big (the surface was designed for piles of ledgers and not a laptop). I was going to shove it into our minivan and take it to the dump (I try to go to the dump weekly or biweekly during my decluttering project), but I didn’t fit in the van. And then Jeremy remembered the city’s bulk pick up service. A big crane comes and picks it right up off the curb. The driver didn’t even step onto the street to pick our desk up off the ground and into the dumpster in the back. We were entertained in our respective home offices.

I’ve been trying to watch Reacher on Amazon. I loved these books when Edda was first diagnosed with Rett and I was devastated in the real world. I needed fast, furious books where the bad guy always loses in the end and good triumphs. Completely out of my regular reading themes, but I did end up reading 8-10 Reacher books during my time in Singapore (I checked them out at the library at the shopping mall next to our apartment complex). But I’m kind of a wimp when it comes to on-screen violence. So I watch like 5 minutes at a time in the bright sunlight until I can’t stand it anymore and then turn it off. I’m keeping the faith that the good guys will prevail, but man, it’s hard to not be discouraged as we work our way towards that goal.

I signed up a few weeks ago to run the Marine Corp Marathon in the fall this year – to celebrate my 50th year. I do not know if this is a good idea or not, but it’s what I’m doing or at least what I think I’m doing. So the long runs on the weekend are not for nothing. I do love running the trails, but it does make me tired, I take deep naps in the afternoons after the long runs which are both glorious and also feels like I’m wasting the entire day. I feel like I’m getting enough sleep in general, but this week – I’m just worn out. Sometimes I think, no problem, I can run a marathon tomorrow as long as it’s really slow, but other times I think – omg, I can’t add another 10 miles to the long run.

Yesterday, one of my favorite Peloton instructors, Olivia, high fived me! Vickey thinks it’s a fake account, but I’m pretty sure it’s her (or her assistant). I was taking a brand new class she just did that morning on demand. I think sometimes they stay logged in to just give out high fives. (I wish I was running faster or at least following her class, lol. I was just there doing my own thing.)

Time to declutter hats. We have a lot of baseball caps given that no one in the house wears any baseball caps.

Vince is 20 today! He called last night thanking me for being born – that he likes his life and is grateful for it – even though the world is going to hell in a handbasket. And I am grateful to him for making me a mother. I apologized that his childhood was bookended with 9/11 and then the pandemic/threat of a world war/climate change, etc. I have been a mother for 20 years! My kids turning 20, 18 and me turning 50 this year has made me cry. Motherhood was nothing like I thought it was going to be and, at the same time, exactly how it was supposed to be. Lots of struggle/sadness and lots of happiness and triumph. Vince, may the force be with you. I love you always Vincie.

Megan, one of Edda’s teachers, came over for dinner last night. Edda was very happy to see her outside of school! Masking became optional in schools today – pretty much 2 years to the day since the pandemic closed the schools down. Megan assured us that she’d continue masking and that she felt that most of the kids would mask in the classroom, but unsurprisingly, the bus driver and bus aide showed up today without masks and said -hey, you know, you don’t have to mask anymore. We sent Edda in a mask today, I’ll see how it goes. I’m not too worried about Edda, she’s tripled vaxxed and has a good set of lungs and can clear them pretty well, but there are people who can’t.

Vickey and I have for the past few years (on and off, more off recently – I don’t think we’ve read anything together since I started my nursing job which is now almost 4 years ago) had a 2 person book club – a favorite facet of our friendship. I have never been in a real bookclub, I fear I cannot read fast enough to match the monthly meetings and I’m loathe to express my true opinions in front of a group of people. Vickey has been in a few (?), ok, maybe one neighborhood book club and found that she disliked all the book choices. So in our 2 person book club, Vickey gets to pick all the books (she is not a reading dictator, she has good reading taste and usually presents 3-4 choices for me to pick from) and then I get pulled along by her reading progress. I love it because Vickey’s commentary on the book is insightful and hilarious and keeps me reading. I’ll get to a chapter and be like – omg, Rosamund went behind Lydgate’s back to stop the sale of the house! I can’t believe it! And she roll on with commentary about Rosamond and Lydgate that will make me laugh or think about the characters in a different way. Our goal was to finish Middlemarch by the ides of March and she did it! I’m not too far behind (I’m on page 629 out of 785), but I will miss the ides of March deadline unless I make a big push, which I may. This is a very boring book, which is ever so shocking to both of us as we both loved Silas Marner and Middlemarch is regularly in the top 10 of all-time best books ever which – why?!? why?!

It was nice to see Gene at Sunday night dinner. Gene was in the hospital next week with a small bowel obstruction (SBO) and needed an NG tube – but really nothing more. That’s good.

Edda’s been having nosebleeds at night – though today, she woke up without one and on the way downstairs, she started!

We are slowly transitioning Edda over to more teen-ager-y shirts and I’ve decided on band shirts. We are starting a collection – first up is Japanese Breakfast.

I’ve had a nice few days – a lot of socializing, a lot of being in nature.

Kristen and I went hiking on Friday – starting at Brookside Gardens and spending the morning walking along the riverbank. The time past quickly and we covered a lot of ground. The weather was fantastic! Kristen works on the same unit as I do, I admire her nursing skillz – she moves with a particular certainty and calmness that I like. I’ve worked there almost 4 years, through a pandemic, and it’s only been in the last year have I felt close enough to people to do things outside of work with them. I hope we can do this regularly, Kristin is up for weekday, physical outings – which is something I’m looking for. I dream of doing Old Rag in Shenandoah – only in the winter on a weekday so we can find parking and some quiet trail time. She’s trying to get me to stand up paddle-board. I’ll have to borrow one first and hope my shoulder cooperates by the time the weather is amendable for SUP.

My parents came over for Friday night dinner. I am pretty much at peace that I’ll turn into my parents. They can drive me crazy, but in a very predictable manner. For example, my grandmother, to my mother’s dismay, believed that for her diabetes, she could counter the effects of sugar by eating more salt. My mother, to my dismay, believes that there was no cases of Covid in the west-coast town where they have their 2nd house. Who knows what I will believe? That pigs fly? Maybe? (Actually, I’m afraid I might start to believe in G*d, yikes! who would I be then? – not me now! I enjoy telling my believing patients that I don’t believe and see what they do with that information.) I’ve already apologized to Vince and Edda. How can I tell this is going to happen to me? Look at how we are all dressed for dinner:

We did not consult each other on this outfit of short sleeved puffy vests and knit hats. You see? The turning into my parents is, unfortunately, unavoidable. I also gave all the tools (hundreds of individual Allen, socket and regular wrenches) that I decluttered out of my garage to my father who eagerly took them all, even though I saw a complete new set of Allen wrenches on his tool bench last weekend when I was having dinner there. I’m going to have to declutter them again! Jeremy says that it’ll be easier the 2nd time.

My parents brought over some 24K jewelry for me that they’ve had in their stash – ostensibly for my 50th birthday which is six months in the future – but I think it’s their own version of decluttering. It’s a good trade, no? A bunch of wrenches for some 24k gold. I know this is looking a gift horse in the mouth, but I took them into my hands and I groaned – oh so Asian! And my mom laughed, yeah, they are so Asian. They are quite ugly and over the top. But I’m wearing the necklace now, because I think it’s only in the wearing of jewelry does one get affection for the piece. Or that your friends and family will remember that you wore them. My parents can’t quite remember who bought them or for what occasion. Jeremy’s like – they aren’t for wearing. I said how do you know? He said – do you think they set the price for that necklace based on weight or based on how beautiful it is? My parents chimed in, gold is good now that inflation is going up.

I ran 14 miles in the woods in glorious weather on Saturday morning (with the necklace tucked inside running-tech-gear). I’ve been consistently running 12-16 miles every weekend since mid-December. I’m quite proud of myself – but I also want it to be easier. I run really slowly, but it still wipes me out for the day. I could easily come home and nap for the entire afternoon.

Saturday evening, Rachel came over (also a nursing buddy – I admire her for her quickness and fast thinking and judgement of situations) for dinner and she gifted us this enormous jar of kimchi. It literally is a gallon of kimchi. I asked if she got it at H-mart and she shook her head and said – H-mart has bad kimchi. Korean Corner is better. I nodded as if I knew this was a fact. Jeremy served turkey tetrazzini and we all piled kimchi on top of our helpings of hot-dish. Korean/American midwest fusion. Lol. After dinner, Jeremy took the dog for a walk and I rested my head on Rachel’s shoulder on the couch and she said – you need to dye your hair. I can do that for you. I told her that I might dye it so that the white ones turn blue or green or something like that. She touched my hair and said – no! you can’t do that. Let me dye your hair for you. Then I told her if I dyed my hair then I would look too young for my husband. By then Jeremy had come back from the walk and I rubbed his grey hair to emphasize my point.

For most of my life, I’ve delighted in productivity hacks. How to squeeze more into a day – I loved finding bits of hidden time, tucked away in interstitial spaces to do more. Listen to Spanish podcasts while walking the dog, going to pharmacology class in the middle of the workday, doing a small one-minute task while waiting for my lunch to warm up in the microwave, getting up early to run or to quilt (while listening to the Daily at the same time). I could transition quickly from one task to another. These things do not interest me anymore. When I hear the news, I just want to eat food that Jeremy has cooked, do just enough paperwork the keep the ship I call my life from grinding to a complete halt in the Suez Canal, to hug and laugh with my loved ones, to go with friends on long walks, feel the sun on my face, watch pointless youtube videos. My transitions are so slow now – the time between getting up from my desk at work to starting my daily run – which usually, I can clock in at under 10 minutes, meandered into 35 minutes today – to where? I’m not sure. Just rearranging a bathroom shelf or looking for a favorite pair of running shorts or wandering into Jeremy’s office to chat? Most days, I feel like a toddler, needing two hours to get ready for bed. I want to enjoy a mid-day nap. Today I dreamt of watching all the TV on HBOmax.

The list of things to do remains long. I rewrite the list every morning and I add to it all the time.

I came home last night from my nursing shift crying in the car. I don’t often cry at my nursing gig, but it was a tough shift, and the car ride was just enough to clear it out of the system (haha, maybe.) Jeremy was on the couch (probably playing pokemon go) and I sighed and relaxed my body into the crooks of his and I said that I both loved and hated it at the same time. My shoulder ached the whole shift – bursitis, torn rotator cuff? I have no idea. I wore myself out. There are no more traveling nurses on the unit, they decided to lose revenue on 8 of the 30 beds instead of paying 4x my salary to staff those beds. As a result, I’m back to being friends with everyone working and the unit is quieter with 22 patients instead of the usual 30. It meant that with my one unstable patient who was constantly getting out of bed and wobbly and upset – I could not administer enough benzos to calm them – it was not only me on the case, but my charge nurse was in the room all day managing calls to security and both floor techs (not only the one assigned to the patient, but also the other tech who had his own patients, but is always kind to me) and the other nurses when they passed by were in/out of the room all day until I finally transferred the poor patient mid afternoon to ICU to manage the crisis. Of course, through this, I had 4 other patients coming/going and having their own needs and medications. I managed two surgical preps, four discharges and two admissions yesterday. Then at about 6:30 pm (being very weary and achy), I had a very stable post surgical patient who I carefully and kindly assisted to the bathroom and back under the watchful gaze of their adult child and then stepped out to take a phone call just before giving their parent some Tylenol regarding another patient’s prescription snafu upon discharge to a skilled nursing facility, and the child walked out into the hallway and yelled at me for not adequately taking care of their parent and told me to disregard the phone call implying their parent was more important. Honestly, a shock to me because I very rarely get accused of this – usually only from drug addicted patients – almost never from patients or their family members. I pride myself on the quality of care I provide – above and beyond usually. (If you press me on this, it is because I’m trying to pay it back/forward – if/when I am gone, and if/when Edda is still alive, I hope that G*d will look down on me and see the care I gave to perfect strangers and will put someone in the direct path of Edda to provide the care that she needs, that she won’t be lying in her poop all day or go without meals waiting for someone to feed her. Though I totally would understand if someone is coding or bleeding out a few doors down and you know, you gotta do that first.) Usually these things don’t throw me, but I was really done being kind for the day. So I got a callback number on the phone call to finish it later and returned to my patient trying to not cry, gave them the Tylenol, some anti-nausea medication and IV antibiotics and then tidied up the room and set the blankets straight and looked at them both and told each that if they needed anything to please call me and I’d be happy to help and by the end of that, I could tell that the child was apologetic for yelling at me. This is the tough side of the shift, but there were also some really beautiful moments as well. Hugs and well wishes and good lucks given to other patients and laughs between colleagues that I love love so so much.

We were in the lunch room for a few moments (while a family member was with the agitated patient) talking about what would we all do in case a nuclear missile landed on the White House. I think most of us would just prefer to be wiped out upon impact instead of slowly dying of the radiation poisoning, but given that we are about 20 miles from the White House. Though all of us groaned at the thought of not being at home when it hit. What if we were here? At the hospital? I want to be home with my dog. I was like – there is no running – can you imagine all of us on 495 at the same time? Impossible.