Christian, what time is it?
What time is it? It’s dark. I can’t see the clock.
Oh. It is 3:06. Is there a light on in the hallway?
I think Henry is up.
Oh. Mom, you are awake.
Is everything OK?
In your room?
On the rug?
What was he doing out of his crate?
He was barking. Sometimes he barks. I let him wander around.
Is the poop pick-up-able?
I’ll get it. I just take up the FLOR rug tile, right?
It’s complicated. I will help.
I need to find my glasses.
I need to pee.
Hello, Guto. Are you going to join me in the bathroom?
Mom, I am getting a poop bag.
Guto! People pee in the bathroom. Not puppies!
Elizabeth, did Guto pee in the bathroom?
Nope, only on the sheepskin bathmat.
I will just throw it away.
Mom, I got the poop bag.
Oh no! Guto’s pee dribbled all over the hallway floor.
Just a minute. I am putting the sheepskin bathmat in the bathtub.
Can you get the enzymatic cleaner and the paper towels? Then I will get a bowl of water.
Please hurry, I have pee on my feet. I am leaving pee footprints all over the hallway floor.
My feet are clean. I have a bowl of water.
I sprayed all the pee footprints on the hallway floor with the enzymatic cleaner.
The hallway floor is slippery.
Henry, where is the poop?
Near the door.
We need more poop bags.
Elizabeth, I have Guto.
We are hanging out.
There is a poop stain on our bedroom rug.
I will spray the stain on our bedroom rug with the enzymatic cleaner and spot treat it in the morning.
Oh, you probably need to clean Guto’s butt.
Henry, we need to clean Guto’s butt.
Mom, how do we clean Guto’s butt?
With many damp paper towels.
Dad, the toilet won’t flush.
Did you flush the paper towels?
All of them?
You should never flush paper towels.
Is the toilet clogged?
You need to pull the paper towels out.
I can’t reach them.
Did you actually try to pull them out?
You really stuck your hand all the way in the toilet?
I tried but it didn’t fit.
Who does that?
Who tries to stick their hand all the way in the toilet?
You told me to.
Yes, but who actually does that?
I will get the plunger.
OK. I will put Guto in his crate.
Elizabeth, the plunger barely worked. We almost flooded the bathroom.
Are there towels I can use in the hallway linen closet?
Christian! Watch out!
Are you OK?
I almost slipped down the stairs.
The hallway floor is slippery.
I see that now.
Mom, do you need any help?
I am working on the poop stain on the FLOR rug tile.
Can I take up the FLOR rug tile?
You really want to take up the FLOR rug tile.
We can leave the FLOR rug tile.
The enzymatic cleaner will do its thing.
Mom, are you finished?
OK. I am going to bed.
Christian, are you going to bed?
Yes, I am having some water first.
What time is it?
Oh. Maybe I will have some coffee and just get on with it.
24 hours later…
Emlen, is everything OK?
Penrose pooped in his crate.
Is the coffee set up?
I walk anywhere from one to ten miles a day.
I walked twenty-seven miles over a three-day weekend.
Christian is quickly checking things off “The Project List”.
We are totally on top of yard work.
I think it is nice that everyone is home.
I think it is annoying that everyone is home.
I am a natural at social distancing.
Henry has a new mountain bike.
Christian, Henry and Emlen mountain bike a lot.
They are mountain biking at this very moment.
Emlen had the biggest crash ever on his mountain bike. He is OK.
I almost finished spring cleaning the house.
I did not finish the spring cleaning because we got puppies.
We now have pack names: Queenie, Hook, Rick, Boomer, Fang, Pen and Gutes.
We watched all of Silicon Valley. We laughed a lot.
We watched Tiger King. We felt dirty.
We watched Schitt’s Creek. We want to dress like David.
We stopped watching TV because we got puppies.
I had my first Zoom girls night in.
I found a vitamin supplement that has extinguished my hot flashes.
I can never remember what day it is.
Henry grew an inch in three weeks.
Henry and Emlen have started playing Dungeons & Dragons.
Henry tried to beat Grand Theft Auto as a pacifist. He was unsuccessful.
Emlen reached level 382 in Rocket League.
Emlen learned how to take apart and put back together a bike hub.
Emlen discovered that he likes taking things apart.
Emlen discovered that putting things back together is not as much fun as taking them apart.
Henry started an art project and found his inner artist.
Henry has a six-pack.
I switched from drinking coffee to drinking espresso.
Henry started drinking espresso.
We bought a twelve-cup stove top espresso maker.
We are installing a second sink in our kitchen for hand washing, puppy feeding and espresso drinking.
I grocery shop two to three times a week.
We learned how to prepare Beef Pho.
We learned how to prepare Korean Short Ribs.
We learned how to prepare Pot Roast.
We learned how to prepare Pork Belly Adobo.
We learned how to prepare Dry Rubbed Spareribs.
We learned how to prepare Bacon Sloppy Joes.
We grilled some part of a cow every Sunday night.
I am considering becoming a vegetarian.
Emlen has become a master at making pancakes and sandwiches.
Emlen turned thirteen.
We bought and tried every flavor of Oreos.
We even deep-fried Oreos.
Emlen grew his first armpit hair.
Henry announced, at least a hundred of times a day, his plans for his pandemic hair.
Christian grew his hair back.
Emlen cut his hair.
I bought an epilator.
I found out that epilators hurt.
My eyebrows have not been this thick since the eighties.
I miss my hair removal lady.
I coordinate my masks with my outfits.
I enjoy wearing masks. They hide my resting bitch face.
Christian and Emlen built a wall of empty seltzer cans.
We now refill our Soda Stream cartridges at home from our very own CO2 tank.
Christian started a new gig at Takeda.
I spent two weeks, on the phone, organizing all of Emlen’s meds with our new insurance plan.
I started taking CBD oil.
I am not sure CBD oil does anything.
I am unwilling to stop taking CBD oil, just in case it is doing something.
Henry helped with the laundry.
We changed over most of our fluorescent bulbs to LED’s. Our house is very bright.
Christian finally ordered his welder.
We had to cancel our trip to the Netherlands.
Henry and Emlen are swimming in small group clinics at The Thoreau Club.
Henry and Emlen participated in their first virtual swim meet.
We order take-out every Saturday night.
Christian organized his wood shop.
We cleaned the sunporch.
We went to New Hampshire, the only place we can travel to, three times.
We bushwhacked to Ballou Camp.
We explored Gates Mica Mine.
Henry caught two fish.
We taught the puppies how to swim.
We forgot to have the Toyota inspected.
Christian never showers.
Henry showers all the time.
Emlen started showering all the time too.
The puppies drove away the woodchuck.
The puppies have done nothing about the rabbits.
I bought the puppies a leather rabbit chew toy to train them to drive away the rabbits.
The puppies prefer old dish towels, cat toys and ice cubes to leather rabbit chew toys.
I am never alone.
Henry sent his paper driver’s permit through the laundry four times.
I discovered that paper documents are not repairable after they have been laundered four times.
We went to the RMV to replace Henry’s paper driver’s permit.
I like appointment only RMV’s.
We learned where the puppy ER is.
Henry beat his friend Charlie at one on one basketball.
We cut down a lot of trees.
We have bench in the front yard.
We laid a pea stone path in our front garden bed.
We installed posts for the hammock.
Henry said that being at home all the time with no real responsibilities made him feel like he was seven years old.
We enjoy “bring your own chair and drink” driveway socials. I wonder what Frank Lloyd Wright, the proponent of the fireplace and hearth as the center of the home, would think about the driveway as the new social space. I wonder if this new scene will change driveway design.
We quickly figured out that remote learning sucks. It sucked this spring and I suppose it is going to suck again when the kids “go back” in the fall. Emlen is choosing the remote learning only option for obvious reasons. Henry is considering the hybrid learning option, 2.5 days in school and 2.5 days remote—especially after the email we just received from the Superintendent explaining that some teachers will teach from home, which is totally understandable, but means that if you are sitting in a classroom on campus, socially distanced from your peers, there is a possibility that you will be lectured to, via Zoom, from a home teaching teacher and it will vary everyday—because he thinks it is going to be a “shit show” and will provide endless hours of amusement. I think the learning platform will shift to all remote pretty quickly. And it will suck.
I am tired, so much so that every once in a while, I have to crawl into bed at six in the evening completely exhausted. I watch Netflix and pass out around eight. I had to on the day we decided to postpone SWIM to FLIP CF. We had been working on it non-stop for three months, designing the registration platform, inventing logos and graphics, re-learning Photoshop, discovering that my Photoshop software was so old that it did not work with new printing techniques, researching, purchasing and learning—again—new Photoshop software, ordering swag, spending hours drumming up sponsors, starting a new LifeLineRacing Instagram account, figuring out Hootsuite, organizing volunteers and finally nagging swimmers and friends to sign up. I was tired for days.
We are up and running again. SWIM to FLIP CF is now virtual. It seems to be going well. Virtual events are a lot less work than one-day-in-person events. Emlen did his non-stop two-hour swim last week. He swam 5,850 yards—3 1/3 miles—and raised over $5000. Pretty good for a 13-year-old with cystic fibrosis in the middle of a pandemic.
Collage by Henry Lease "Emlen's Swim" 8/09/2020
In March, in the thick of COVID-19 #stayathome and #lockdown, I finally got up the nerve to run a few errands other than to just the local grocery store and Trader Joe’s. The forecast predicted buckets of rain. It was still cold, making the thought of waiting in line six-feet apart with hats, gloves, boots and down coats on while juggling bottles of hand sanitizers and strapping masks on and off not in the least bit fun. But I figured everyone would be home, avoiding the storm. Shopping would be easy.
About half-way through the day, I noticed how oddly quiet it was. Yes, there were less people out and they were very focused on their tasks, more so than usual, not nearly as chatty as in the past. However, that is not why I thought it was quiet. I realized, while standing in the nut aisle at Costco trying to decide if it was worth spending twenty-two dollars on a bag of pine nuts, that I had not heard a single cough all morning. Not a single one. And I had not heard one person tell someone else, “Oh, I have a little cold, but I am not contagious. It’s OK.” Everyone I encountered looked super healthy.
Ever since Emlen was diagnosed with CF the cold and flu season has been my nightmare. It used to be common practice among the abled bodied to just ignore the fact that they were sick. No one ever stayed at home to recover. People just popped cold medicine and got on with their lives no matter what virus they happened to be shedding. I heard every cough, sniffle and sneeze. I noticed every used tissue lying around. My ears perked up at every conversation between mothers—at the store, in coffee houses, while upside down in downward dog position during a yoga class—about how their kids had a fever the night before but were fine in the morning; or even better, “So-and-so threw up, but I sent them to school/swim team practice anyway.” That garbage can on the pool deck has always given me hives.
As COVID-19 was cranking up, with cases popping up all over the Pacific Rim, Emlen’s therapist, Chris*, asked me if I was worried about it impacting Emlen’s health. The answer was obviously yes; however, I was not more concerned than past winters.
“It is really not going to be any different for us.” I replied. “Actually, it may be better. I have heard that hand washing is finally trending.”
From the beginning of cold and flu season in October until the end of it in April, I am on high alert. Any flu or major virus has the potential to hospitalize Emlen. In our house, hand sanitizer is always a few inches away and masks are worn at all hospital and doctor appointments. Hand washing is a common practice. We touch every public elevator button with our elbows and never-ever use any stair or escalator handrails for balance. “You can just fall down,” I tell the kids. Also, I refuse to shake hands. To those who insist, the ones who keep their hand extended not getting the hint, I explain that I might have a cold so shaking hands would be a terrible idea—I got away with it because it used to be acceptable to be out and about with a cold. ** And I keep in constant contact with the school nurse about whether or not there is a flu, virus, or GI bug finding its way through the middle school. I ply Emlen on which class-and-swim-team mates are absent and who is coughing, making mental notes of parenting strategies and compiling a list of whom we should maintain a six-foot distance from at all times. Our house mantra is that if we can make it to February break, we have good chance of making it to April and into the summer without a hospital admittance.
Chris thought it was interesting that I was so calm about the pandemic while everyone else was panicking. I already had all battle systems in place. The risk management required was not going to be any different. Also, I do not watch the news. That probably helped.
The world has caught up to my hypervigilance. Everyone is still washing their hands. Masks are mainstream. I am sorry that it had to happen this way. I wish it could have been done through courtesy and common knowledge rather than a pandemic. But, as a result, it has been Emlen’s healthiest winter/spring on record. He has not coughed for months.
According to the guy at Trader Joe’s who manages the entrance by wiping down the carts and allowing people to enter the store at what sometimes seems a frustratingly sluggish rate, ninety-nine percent of the population has a pretty good attitude about all of the pandemic protocols. Only one percent are assholes. ***
I hope it stays this way even when COVID-19 is no longer a threat—the handwashing, the hand sanitizing and staying home when sick. And if you must leave the house, you can mask up and Cover Your Noses for #65Roses.
You can save the world.
To everyone who refuses to wear a mask, the one percent, you are in the running for the LifeLineRacing 2020 Karma Mallet Award. Just giving you fair warning.
*Emlen and I are in what I can only describe as couple’s counseling. It is pretty common for a mother and their sick child to be unhealthily enmeshed. We are working on it. It is exhausting. I will probably have more to say about it when he is twenty-five and out of the house.
**I am relieved that hand shaking is no longer socially acceptable.
***His words. Not mine.
When Australia ran out of toilet paper, I panicked. If you live with someone who has cystic fibrosis you know the importance of toilet paper. * You need a lot of it. And if an entire continent could run out of it, well, I was worried. Toilet paper became the hot topic of conversation with the voice in my head, pretty much twenty-four seven. I even dreamed about toilet paper.
The obsessiveness was weird. I admit it. I should have been more concerned with Emlen’s medication and our supply of hand sanitizer, gloves and masks; items I would need to keep him safe from the impending coronavirus. However, all the meds had been ordered. And we had gallons of hand sanitizer scattered around the house. If we ran out soap works just as well, if not better. Also, we always have a huge supply of gloves and masks, leftovers from past hospitalizations and rounds of home IV antibiotics. I had control over those items. I did not have control over toilet paper.
I usually purchase our toilet paper from Costco and squirrel it away in our bathroom cabinets. I do not buy it often. But, given the Australian situation, I figured it would not hurt to bring home another case from my bi-weekly Costco trip. When I finally managed to get there, I had, apparently, just missed THE RUN on ALL paper products. The back half of the warehouse was empty. I bought meat instead. On the way home I stopped at Staples. They still had toilet paper. I bought all of it.
That night I announced that we were ready for COVID-19. We would not suffer from a toilet paper shortage. Emlen and Henry teased me unmercifully. Emlen jumped on his phone and informed me that supermarkets and stores like Target were still stocked. “Ok Mom,” Henry smirked with a huge eye-roll, “You know this is a little over the top. What happened in Australia could not possibly happen here.”
“Maybe. But I told you the American people would never elect Donald Trump as President and they did. So, who really knows,” I shot back.
Then toilet paper vanished.
We worked our way through our existing stock. Every time I changed a roll, I would announce it to the world—all four of us. Fun fact: four people go through toilet paper a lot faster when they are home all-the-time and not at work, school or the pool. I became very aware of our diminishing supply. I began to worry again.
After a little hunting I discovered that Trader Joe’s has managed to maintain a steady stream of what they call “bath tissue.” It is sold as a six pack and is readily available if you are willing to wait in line for the ten-in-the-morning rush. You have to head straight to that weird aisle of pet supplies, facial and body lotions and cleaning products. You cannot be sidetracked by any new fruits, seasonal flowers or fancy bread mixes because the Seniors, who have had the store to themselves for an hour, are pretty good a gobbling up all but a few of the paper products. They seem to pee a lot.
To keep our supplies strong, I decided that I would pick up a package every time I shopped at the store.
A few weeks ago, after waiting in the number two spot in line for a solid thirty-five minutes, I grabbed my super sanitized cart from the gestapo grocer who now guards the entrance and wheeled my way around the chocolate case, through the frozen treats to find myself staring, not at the usual six rolls of plush tissue encased in plastic, but at individually paper wrapped rolls of toilet paper. They were imprinted with the name “Guest” and looked as if they had been stolen from a hotel the night before. The sign above shouted “two per customer.” Panic set in again.
I am embarrassed to say that I immediately went home and ordered a whole bunch of really expensive toilet paper from China.
Then I did a little more research and discovered that commercial toilet paper is still available. You just have to know where to look. And it is cheap. It has the bulk thing going for it. But it is not convenient for household use. Picking up a heavy nine-inch diameter roll of toilet paper and unwinding it every time you are sitting on the toilet would be such a drag, especially if you have cystic fibrosis and use the facilities more than most.
So…after some thinking, some designing, some discussion with my design-build partner Christian, a.k.a. The Art Floozy, some sawing and drilling and some painting…
I present, to all the mothers I know and love: The Toilet Paper-inator, Pandemic 2020 Edition
Happy Mother’s Day!
May you never run out of toilet paper. **
By the way, the really expensive toilet paper from China has yet to arrive.
*Read blog post “Fast Poops” (November 2017) for a refresher on cystic fibrosis GI issues.
**The Toilet Paper-inator, Pandemic 2020 Edition is designed to use the 9-inch diameter, 700 hundred feet per roll, GEN Jumbo Jr. 2 Ply Toilet Paper commercial roll. You can find refills at www.cleanitsupply.com
I have not written in a long time.
I have been busy. Super busy. The minute the year passed Thanksgiving it was a full speed ahead, balls to the wall, all hands-on deck kind of thing.
High school swimming starts the Monday after Turkey Day. GO CCSD! I can’t believe I just wrote that. I am not a “Go…!” kind of person. However, the Concord Carlisle Swim and Dive team is made up of such a great group of ninety plus kids, you cannot help but be enthusiastic. The season is ten to twelve weeks of nonstop swimming, weightlifting, morning practices, swim meets and social gatherings. The social gathering part is the most work. There is a party every weekend, sometimes two. Thank goodness for Charlie, who drove Henry EVERYWHERE, allowing me to get a decent night’s sleep.
Then December happened. The holiday season is usually my marathon, but this year it was a more of a sprint given that Thanksgiving was late—why did the calendar gods do that? I have come to look at the month as one big, giant checklist. I am not alone in this view. I was listening to a Moth podcast a few weeks ago and the storyteller was trying to figure out why adults lose the ability to feel the magic of Christmas; that feeling which fills every corner of the house when you are a child. He came to the same conclusion that I did. The checklist.
I like my life to be scheduled and predictable. I welcome a checklist. Every Sunday evening, I scribble and doodle what I have to do for the upcoming week, communications, kids’ activities, chores projects, extras, social engagements, etc., on a five-and-a-half-inch by eight-and-a-half-inch piece of scrap paper. I refer back to it several times a day, adding and subtracting thoughts and items, crossing things off when complete and moving chores to the next day when I procrastinate. Once, I misplaced the list in a pile of recycling in a mad dash to clean up the kitchen. I was confused for the rest of the week. “It is art and autobiographical,” according to my friend Paul. Someday I plan to use all my lists as #futurewallpaper.
I am in my element when I organize the holiday checklist. Since it is pretty much the same every year and I usually have most of the shopping done in August, I can jump right in. This year it promised to be even easier to put together. Around Thanksgiving, with some cajoling from Henry, Emlen admitted he that knew Santa was not real. I think he had figured it out a few years before but was unwilling to voice it out loud. I noticed Emlen’s body language change when he finally confessed, “Yeah, I know.” He stood up taller. He seemed cooler. He flipped his hair a bit more. He was older.
Putting sentiment aside, I took the opportunity to begin loudly chanting my mantra “I am Christmas.” It was the end of staying up late to wrap and stash presents. It was the end of keeping up with all the little lies. It was the end of having to make up new little lies to accommodate Emlen’s endless questions as he tried to trip me up and force an “Aha! I knew Santa was not real” moment. And the best of all, it was the end of waking up at two in the morning realizing that I forgot to fill the Advent calendar and move the elf. I handed the elf moving job to Emlen. He happily tortured his brother for twenty-four days. The elf creeps Henry out.
However, December was chaos; too much of LIFE happened. I should remember that every holiday one of us winds up at a doctor’s office, an Urgent Care facility, or the ER, but I don’t. Ear infections were standard fare when the kids were little. Also, we fought constant CF exacerbations over the course of Emlen’s childhood, which should be going away now because he knows Santa is not real and he is taller, cooler and flips his hair well. From now on, we should be in for, maybe, one or two exacerbations a year. It’s not like he is licking every single mirror at Disney World anymore.
In addition to the regular kid’s getting sick stuff, there were the special medical events that made the holidays even more memorable—or forgettable depending on how you want to look at it. One Christmas Christian wound up at Emerson with pancreatitis from eating too much pate. He had made a lot and we were trying to finish it. We had not yet figured out that you could freeze it. Then, last year, after two rush visits to the pediatricians’ office—one on a Sunday morning—Henry wound up in the ER with a mono diagnosis. And then there was my whole out-of-the-blue appendicitis thing—on our birthday weekend. ** Really, it never fails.
This year was not any different. Emlen woke up on a Sunday morning with a rash—what is with needing to see doctors on a weekend? Normally, I would have slathered him with hydrocortisone cream and waited until it was better—he has sensitive itchy skin from the excess salt his body produces—but this time he had little red bumps everywhere, including his palms and the bottoms of his feet. After numerous phone calls and visits to the pediatrician and the CF Clinic, it was determined that his new CF treatment, Trikafta, was the cause. Emlen fell into the ten percent of patients who develop a rash as a side effect. The only thing to do was to take him off the drug and allow his body to heal. After three weeks of clearing his system he could challenge again. If he had side effects in the second round, he would have to embark on desensitization protocol.
“But this is supposed to be his miracle drug,” I repeated to every doctor. They assured me that Emlen would eventually be able to take it. He was not allergic. His body was reacting to working in a different way. But, it might be a process rather than a simple pill popping exercise.
It was heartbreaking. In just two days off the medication all of his CF symptoms came back, in full force. *
I did get an artificial Christmas tree out of the whole thing, because I had a meltdown on the way home from the CF clinic. While on speaker phone with the family, I asked if we could scale back the holidays. Everyone agreed; it did seem a bit much this year. All of our hopes were pinned on three little pills a day and they had just been taken away. Even Emlen, who talks cheerfully all the time, was moodily silent. But then Henry asked if we could still have stockings, his favorite part. Soon after Emlen wanted to know if that meant there would be no presents. Christian piped in regarding the holiday cards. They were really not OK with my “less is more” proposal—I love the modernists, but no one else in my family does. To soothe me they offered up the artificial tree, “If it is going to make the holidays less stressful…”
I have been lobbying for a faux tree for years. Just pull it out of the attic, set it up and plug it in. All in 15 minutes. No hangry family arguments at the tree lot. No storing the tree in the garage for days because we are too busy with swim meets to set it up. No repairing the stand every year. No back and forth to Ace to get new lights and to pick up the always forgotten tree waste bag. No cleaning up huge water spills because keeping a Christmas tree hydrated requires one to be a Twister expert and we are not. No dried-up withered mess that drops all its needles when someone merely walks into the room by New Year’s. No hauling the carcass to the green waste facility in sub-arctic temperatures. No discovering pine needles under the rug in August. My dream. Clean. Efficient. Simple.
However, my fifteen-minute tree turned into days of work. At one point I had three artificial Christmas trees in our living room: the first one that arrived broken, the second one that was lost in a Fed-Ex shipping warehouse for weeks and the third one that was supposed to replace the first two. Henry and Emlen plotted for days on how we could keep at least two of them. Our house is not that big. FedEx came and hauled them away. I had to call twice to arrange the pick-up.
I thought I would get some writing done after December 25th. It is usually pretty quiet here between the two holidays. But I had no time. On New Year’s Day, Emlen and I hightailed it to the west coast for my mother’s wedding. When she asked if we could make it, just a few weeks before, I was unsure. Excuses flooded my head. “It is after the holidays and I will be exhausted.” “I will have to pull the kids out of school.” “Henry will miss swimming.” “Should we really put Emlen on a plane during flu season?” “It’s my mom’s fourth wedding.” And so on…
I was still on the fence a few days later when I had breakfast with a comedian. Her eyes got wide with excitement as I told her my dilemma. She asked if she could come as my plus one. “Elizabeth, imagine the fodder! A fourth wedding with all the layers of family, all that baggage. It will be fantastic. Sit at the bar with your fake drink and take notes. You have to go.”
She was right about having to go, but she was not right about the fodder. There was none. It was a lovely three days. We really like Peter and his family. The preparations were simple and the ceremony lovely. The high point of the day were the flower girls, Etta and Perrin, who, following my matron-of-honor advice, made that walk down the aisle last forever. They placed each white rose petal one by one along the edges of the runner. Then they decorated the priest’s feet with the petals they had leftover. Hey, if you are paying for an organist to play all your favorite music you need to make it last. I think we enjoyed several complete symphonies thanks to Etta and Perrin.
OK. There was a bit of fodder. Mom got annoyed at me for walking at four in the morning. I was up and had nothing else to do. “Did you seriously walk in the pitch black? You could have hurt yourself. There are coyotes out there. And mountain lions.” I explained that I had my phone and a flashlight, but she would not let it go. The next morning, I waited until seven when the sun rose. It was not nearly as peaceful. I will take the animal kingdom over Silicon Valley runners and cyclists any day.
Then there was the whole blow-out bar and make up adventure. First, I had my hair blown out, which if you know me, you might think is a little nuts because my hair in about one-and-a-half-inches long. When my mom asked if I wanted the appointment, I tried to explain that my hair was pretty short, but she said that she was sure they could do something with it. “OK. If you say so.” I was curious. I had never been to a blow-out bar.
The stylist tried to do her usual thing with clips, product and several big brushes. It was almost impossible. The clips continuously popped off my head. My hair was dry before the product could set. The brush ran out of hair about a quarter of the way through its turn. The end result looked like my hair was pulled back. It looked good but I think I could have done the same thing at home with water and a comb. Mom’s blow out looked great. She has more hair than I do.
Mom’s make-up was another story. The makeup artist applied pinky-orange hues all over her cheeks and eyes and then painted her lips with a deep orange stain. Orange is not the best color on Mom, especially on her lips. She had her colors done thirty-seven years ago. She is a Summer. She wears pink, blues, greys and purples. She does not wear orange. What was the make-up lady thinking? We remedied the situation with a quick trip to the other make-up store in town. They toned down the orange, boosted the pinks and found a lip gloss that could have been named “Mom’s Mauve.” She looked lovely. The light hints of orange that were left complemented her deep purple dress, a color she chose because she is a Summer.
Oh, almost forgot. Towards the end of the reception, little cousin Hugh had had enough of his sports coat, button-down shirt, bow tie and suspenders. He took them off. All of them. After running around bare chested for a bit, it was suggested that he get dressed. Leaving the button-down shirt, bow tie and suspenders on the floor, he put his sports jacket back on. It was a look. So much so, that several of the uncles did the same. I wish my phone took better pictures in low light and that my focusing skills under pressure were better, but you get the idea…
I am convinced that Hugh will be a leading tastemaker when he is an adult. Or a Blutarsky-esque fraternity brother. It could go either way at this point.
Normally, after the hubbub of the holidays and a quick trip to the west coast, I need a few weeks of doing nothing. I took one day. Only one, because I had to get on top of SWIM to FLIP CF, LifeLineRacing’s first ever swimming fundraiser, although at that point it did not have a name. That was one of the things I had to do, come up with a name.
We went live a about a month ago. It has been a lot. Karen dB, Christian and I have been working every spare minute setting up the registration portal, finding sponsors, pushing the event on different social media platforms and working out the graphics.
I hope people sign up. *** Or donate to the cause. I would like to at least cover our costs this year. ****
Rather than hiring a designer and paying him/her loads of money, I resurrected my almost dead photoshop skills and designed all the posters, banners, flyers, swag and social media announcements. It took a whole weekend of ignoring everyone to remember the basics. I am getting there with the rest. Image technology has improved and I have some catching up to do, but I now have enough skills to put together one of my art projects from last year, “Sisyphus is Not a Myth” aka: The Laundry Photos, 2019: one photo for each and every load for an entire year.
I did six-hundred-and-sixteen loads of laundry last year, above are photos one to six-hundred.
Originally, I thought taking photos of laundry would be something to do that fit within my newly developed creative statement: “exploring the ordinary and the mundane of everyday patterns and routines through art and writing,” but it also unstuck me.
I have been stuck for a while, a long while. Way back in graduate school, I took a required drawing class that concentrated on gesture drawing, still life, self-portraits, nudes and nude self-portraits. The professor was tough. About halfway through the class everyone switched from charcoal to pastels. Except me. Apparently, I was having trouble grasping tonal values. I had to stay with black and white. After a long discussion with the professor I was sent home to sort laundry, “because once you can properly sort laundry into darks, medium lights and whites, you will understand tonal values.” I sorted. I didn’t get it. Where do you put a navy and white striped t-shirt? With the darks? With the whites? Or is it a medium? I even squinted my eyes to blur the colors thinking that would help. All the squinting did was contribute to my crow's feet.
I did not do very well in the class, not because I couldn’t figure out how to sort laundry, but because I refused to hand in the nude self-portrait assignment.
Late last year, while preparing for Sisyphus Is Not a Myth, I began experimenting with laundry photos in color. My kids wear a lot of stripes and patterns, Emlen especially. He really likes to challenge me in the early morning with the most non-matching, super over the top outfit he can put together. Don’t get me wrong, while curating my outfits I prescribe to the theory that you can mix patterns and styles as long as your patterns are different scales and you have at least one consistent color throughout. Emlen goes overboard. So, I thought the soiled piles of patterns and colors would be visually interesting.
However, when I began laying out the color laundry photos into a grid it was a little much. Imagine Emlen’s clothing choices on acid. Actually, it was more than that. It was a Jackson Pollock painting done in Crayola’s neon color crayon line. I switched to the black and white platform and started sorting laundry, again, into darks, mediums, lights and white. It was still just as annoyingly difficult as it was in graduate school.
I take the photos of the laundry with my iPhone and then change them over to black and white. I massage the contrasts in the iPhone editor if they need a little pop and in the beginning most of them did. The first one hundred photos are pretty good. But, due to my tonal value handicap I could not tell, ahead of time, if a shot was going to work. I just snapped a whole bunch and hoped for the best.
Around the hundred and fiftieth photo, I noticed I was faster at sorting laundry and the photos were getting better. I also noticed that I could tell before I took the photo whether it would be good in black and white. I was beginning to understand what my professor had been trying to teach me twenty-five years ago; laundry, when done correctly, is all about tonal values.
Thank you, to my professor. I am now unstuck and find working with tonal values and colors much easier. I get it. I don’t remember your name, but I do remember the nude model. He was superb with his dark glistening skin and rippling physique. And he was so well endowed that he made every male student in the class feel inadequate. I thought that was pretty awesome since architecture can be such a male dominated profession.
I am finishing up Sisyphus is Not a Myth. I am resizing each and every one of the six-hundred-and-sixteen laundry photos into two inch squares via Photoshop. Then I am organizing them into a grid of twenty-two by twenty-eight photos. I was lucky that I ended up with a good number. Imagine having to work with six-hundred-and-seventeen laundry photos.
*He is back on the drug and doing great. As predicted by his team, it was “just” a drug reaction.
**Christian and I have birthdays one day apart. There is always a “birthday weekend.”
*** EVENT POSTPONED: SWIM to FLIP CF Fundraiser: Due to the current public health situation, and in the interest of the safety of our participants, we are postponing our SWIM to FLIP CF fundraising event until Fall 2020. In the hope to maximize the impact of the event to the CF community, we will continue to register swimmers and enlist sponsors. We are incredibly grateful for everyone who has signed up to swim and their fundraising efforts, as well as for the generosity of our sponsors. Be safe, be healthy and Suit Up For #65Roses!
****Emlen is still a bit short on reaching his third and final fundraising goal. If you haven’t donated to his two-hour non-stop swim it is time to pony up. You know who you are.
It took some wrangling, a temper tantrum or two, major Mama Bear Mode, tons of patience and lots of faxing—who faxes anymore? —but it has finally arrived, Emlen’s first box of TRIKAFTA.
TRIKAFTA targets the underlying cause of CF; it does not just treat the symptoms. Once Emlen is on the therapy his lung function should increase. His GI and malabsorption issues should ease. He should have less exacerbations and infections. Colds should not render him useless for weeks at a time. He should have more energy—heaven help us. And, most importantly, his life expectancy should increase.
All with just three pills a day, two in the morning and one in the evening.
We still have to keep up with all of Emlen’s daily therapies as this is not a cure, but it is a huge step in the right direction for longevity.
I feel like I just drank a gallon of sap from a 1000-year-old pine tree.
Many, many thanks to all of you who responded with your thoughts and support over the last week. You, our friends and family, are the best…
Here are the greatest hits:
From Hillary, swim mom, family friend and Emlen’s swim coach:
I am reading this email...and crying. It is an immense relief to hear that research is successfully moving forward. I just cannot imagine your daily struggle, and to know that it may be a tad less from here on out is the best news I’ve ever been privy to. I love Emlen and admire your family in countless ways. Thank you for sharing this amazing news!!!!!
From Chris, brother-in-law and CF Cycle for Life participant—every year:
Elizabeth, we were so excited to hear this news!!! Thanks for the update. I hope the results are even better than expected!
From Rika, swim mom and family friend:
This is such GREAT news and brings tears to my eyes so I can only imagine how you are feeling. I did not dare ask when I read the article in the paper yesterday if Emlen would be part of the group this helped, although 90% is a huge number, someone has to be in the 10% I suppose.
There are no other words then YEAH!!!! Everyone in my family will be thrilled. I look forward to sharing the news with them.
From Baba, Emlen’s grandmother:
I am moved to tears. Thank God for Vertex. Please let us know when he starts taking it and if you notice a difference.
From Erik, family friend and LLR webmaster extraordinaire:
Fantastic News. Happy for you, and this has lifted my spirit for the day.
Raising a shot glass of sap.
From Ellen, family friend:
Oh my God! What an amazing piece of news! I am overjoyed!
From Grammy, Emlen’s grandmother:
FABULOUS! What welcome and happy news you have received!
From Mary, Emlen’s middle school nurse:
This is such wonderful and hopeful news! I am beyond thrilled that it was made available early and that Emlen will be able to start right away.
Cheers on the pine sap, I'll have a cup with you!
From Aunt Emily, sister-in-law:
This is fantastic news! Thanks, so much, for keeping us in the loop. We’re hopeful that this will be a HUGE improvement for Emlen.
You and Christian are such strong, wonderful parents and Emlen is such a trooper. We’re in awe of his positivity and strength as he manages all that CF brings on.
Sending lots of love to all four of you and keeping Emlen in our prayers as he begins this new step in treatment.
From Grandy, Emlen’s grandfather:
This is indeed good news!
From Melissa, family friend:
Oh, my goodness! I had no idea when I read about this that it helps Emlen! That is amazing! I'm so happy for him! Sap all around!!!!!
From the Hesbach Family, ex-pat family friends:
That is amazing. We are so happy for you all. Lots of positive vibes from across the ocean!
Tom, Amie, and Siena
From Meg, Emlen’s elementary school nurse:
I heard rumors....
I have tears in my eyes after reading this...
Thank you for sharing with me, I miss my friend.
How is the year going??
From Tilda, my godmother:
Keep the faith
Onwards and upwards
From Aunt Lindsey, my aunt.
We are so happy for you all. Leigh and I just got back from a birthday celebration in Morro Bay (mine, and 70, gulp!), and I read about Trikafta from a CF new release. That is fantastic news. We send you all our love, and to Henry a special woof from Cozy (who also turned 70).
From Uncle Ted, stepbrother:
Wow! What an update. Brings a smile to hear there is something that can do more for him than just treat the symptoms. Keep up the great work supporting that amazing kid! Proud of you two as well as him!
From Carol, family friend and neighbor:
Oh my goodness!!! That is just fabulous news!! I'm so thrilled for all of you!!! Woohoo! I'll assume that there are no or very low/little side effects? But it's so nice to hear that for once the FDA does something in a timely fashion - there are so many ridiculous delays. Big cheers & hugs to all 4 of you!!
From Alison, cousin:
This is such incredible news to hear! We are so excited for Emlen and the whole family about all of the positive steps to come. Fingers crossed Emlen's well check goes well tomorrow and the pills land in your hands very soon. Sending good thoughts for Henry's challenges too.
How lucky the boys are to have you and Christian. I can only imagine what a difficult road it's been.
Sending hugs to everyone.
From Serena, family friend and Erik’s wife:
This is such happy news Elizabeth! Thank you so much for sharing it with us. We are sending our well wishes, for Emlen, and all of you. If there is anything, we can do to support you with this, please let us know.
We love you guys and hope we can meet up to celebrate with you at a lake in NH sometime soon.
From Sarah, swim mom and family friend:
This is amazing news. Thank you for sharing and keeping us in the loop. I had wondered if this development was applicable to Emlen when I heard it on the news recently.
Our continued thoughts are with you guys.
From Uncle Kurt, college roommate, family friend and godfather to Henry and Emlen:
Stellar news, unless of course you're a Christian Scientist. Go team pharma! Love and miss you guys. Tell Xian to give me a call sometime. I need parenting advice. It's gonna be a girl.
From Peter, Emlen’s grandfather:
Hi Elizabeth, that’s wonderful news and we are happy to know that Emlen’s risks and discomfort will improve, hopefully significantly. We are both fine and enjoying life together, but it is hard not to worry about our fair state with 90-degree weather in late October. Hello to all the family. Peter
From Aunt Cheryl, stepsister:
Amazing news, Elizabeth. So glad TRIKAFTA is out and available. We are all thrilled for Emlen and for all of you.
Fingers crossed for way fewer hospital visits in years to come.
They were all great. Every single response. I loved them all. I just could not include each and every one, otherwise this entry would go on forever. You know I have a problem with blog posts going on forever…
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Ok. I have spent the last several weeks trying to come up with a way to talk about my art, the way I usually talk about things, starting with a metaphorical story and wrapping it through all the sentences that follow. But I have discovered that writing about art is hard. Really hard.
First, I started with this, mostly because I wanted to use the word dither:
“After dithering for the entire month of August, I decided to redo the first canvas of 'The Nebulizer Vial Project, 2019'. I should have started earlier but redoing three months of work seemed like it was going to be a huge drag, so I put it off. By dithering.
The first canvas or panel, whatever you want to call it—somedays I am not even sure what it is—was loose. My art floozy and I were a little hesitant with its construction. So, the final result ended with the burlap overlay jiggling when a person of any girth walked by. By girth, I mean Henry, who has no girth at all. He is tall and skinny, but he moves fast and jumps a lot. I think he is pretending to play basketball.”
But that did not work out. I hit a wall about three paragraphs in.
Next, I tried this approach:
The Cayston vials are tiny. 'The Nebulizer Vial Project, 2019' is going to be fine. I can mount all six vials to the left of the saline and Pulmozyme. No need for the addendum canvas. This is good, because, for the life of me I could not figure out how to get it to work without having to purchase a warehouse in downtown Allston solely for display purposes.
I was in Allston last week, driving Henry and his friend to a concert. I was able to take in the city scene because it was rush hour and we were not moving. Anyway, the area would not be too shabby for a warehouse studio/gallery, still gritty but with some amenities.
I had some other ideas to deal with the Cayston vials. My favorite one involved placing the vials into beautiful baskets made out of screen, burlap and copper wire and mounting them on top of wooden pedestals. They would then be placed in front of their corresponding month. Doable, but fussy and it would not tie into the thesis of the project. I thought about changing the thesis to accommodate the pedestals but came to my senses.”
I got stuck with that too.
Then I thought, let’s just jump right in:
“The Nebulizer Vial Project, 2019: each and every one of Emlen’s inhaled nebulizer vials wired, in order, to four burlap panels for an entire year.”
It was too dry.
So, I am just going to start at the beginning. Not quite the beginning, when I was forced to take my very first college art class my junior year to fulfill a requirement for my art history major. It was an advanced 3-D sculpture class. Why start with something easy, like intro to drawing? Midway through the semester I realized I could do art.
Nor will I bore you with the period in my mid 20’s when I was deciding between a career in interior design or architecture. While writing my nine hundred pro and con lists, taking a calculus class, because, apparently, math is required for graduate school and I took zero math classes for my art history major, and studying for the GRE’s, I was also working in retail, taking design classes and pretending to be an artist. I even had a belly button ring for effect.
A girlfriend/fan of a band I was hanging out with in my spare time—they called themselves Milk Punch-decided that she wanted to start a mobile piercing business. She asked if I would help her by being a client. Sure. Why not? I plopped myself down on a sofa that looked like it was recovered from the street after being rejected by the local raccoon population, in a room that could have doubled as a movie set crack den and unzipped my shorts while the band practiced on the other side of the house. That is the story behind the belly button ring. In case you were wondering.
I ended up going with architecture. It is a funny choice for someone who likes to wrap things with wire. The belly button ring was a funny choice, too, for someone who is allergic to nickel. It was constantly infected. Pretty gross. For the record, I did not know I was allergic to nickel until I had a sub-par belly button ring. The doctor who treated the infection suggested I find an eighteen-karat gold belly button ring. Who has that kind of cash when you are in the middle of making a major life decision, almost failing calculus, studying for the GRE, working part time in retail, taking design classes and pretending to be an artist? I hung the nickel infused sub-par belly button ring from my rearview mirror. It has been there ever since.
It turns out that I am pretty good at architecture. Math is not really needed. At least calculus is not really needed. Basic math skills—adding and finding “x”—are important, but the other stuff you can forget. Pretty early on I realized that moving walls can be considered an art form. Also, you get to use tracing paper and drawing tools. I love working with new materials and drawing implements. And I met Paul—of “Dear Paul” from above—while trying to survive my first real architecture job. The job was pretty awful. People can be awful. But Paul is great. We have been friends for ages. Anyway, architecture kept me creatively satisfied for many years. And it kept my husband busy. Every weekend. Moving walls.
Rather than all of that, I am going to write about my newest art stint. My mid-life creative crisis art stint.
Even though my mid-life crisis has been small compared to some, it still needed attention. My husband and I had been through a lot. Correction, we are always going through a lot. It is constant. We have a child with a chronic illness. We are always battling something. Cystic fibrosis is relentless.
Instead of doing something drastic like moving to VT to start farming goats and making cheese or buying a giant four-wheel drive camper van and off-roading every weekend I looked to the past to figure out when I was truly happy and content. It was in my 20’s when I was pretending to be an artist, at least once the belly button ring was removed. However, I realized at that point in my life I had very few responsibilities. The allure, I assume. This is not the case these days. I am busy with children and their countless activities—read last month’s post, “The Evening Run Around”—a husband, a house needing many repairs, a yard that requires constant maintenance and many, many doctor appointments.
How do you fit in the need to be creative while you are on the hamster wheel of motherhood?
Drawing and painting are not my strong suit. I have tried. It seems so convenient to travel with only a pad of paper and some pencils or pastels, to sit down and start sketching the minute you see something of interest. Or to be one of those artists who watercolors in the wilderness. That would be convenient. We are in the woods a lot. However, I have never had the patience to learn the process. Photography intrigues me too, but I can never remember the f-stop rules.
I used to work with what was around me, making 3-D objects out old wire, discarded fabrics and broken glass. Materials and inspiration came from the houseware store where I worked, from rummaging through my father’s workshop bins of discarded project parts or from items lifted from piles of what other people considered trash. I worked with everyday junk.
Now I am surrounded by groceries,—I shop every week—coffee cups and lids,—I am addicted—junk mail,—everyday more and more arrives—ribbons,—I am one third of the kid’s swim team ribbon committee—laundry,—so much laundry—and cystic fibrosis nebulizer vials—too many to count. These items are my ordinary, my routine. I began to wonder what a year’s worth of each one of these items would look like. Could I present them in a manner that documents what I do on a daily basis, that is visually pleasing while creating a space for a viewer to pause?
I came up with my mid-life creative crisis thesis: Exploring the ordinary and mundane of everyday patterns and routine through art and writing.
Where to start? Which one of those mundane items that make up my life is the most important? Easy. The cystic fibrosis nebulizer vials. Emlen’s cystic fibrosis demands that he sit down two to three times a day to inhale one to three vials of medications at a time. The whole thing, the disease, the medication and the constant awareness of his health is such an integral pattern of my daily life. The timing of the day—school, activities, playdates, meals and exercise—revolves around the nebulizer routines.
I began collecting the left-over nebulizer vials. I needed a feel for the numbers. I had never thought about how much space, both literally and symbolically, the #nebmeds require.
By the way, I am coining a new hashtag, #nebmeds. It is easier to write/say than nebulizer vials.
After I stockpiled a couple of months of the used vials, filling one of my larger salad bowls, I began playing with different patterns and configurations with regard to various calendar systems. I experimented with horizontal, linear and even circular systems. I settled on four panels, loosely based on the current traditional calendar. Each panel would document three months of #nebmeds, with three columns per month, ten days per column and six spaces per day for the vials.
It took my art floozy a few tries to put the panels together—stretching black screen is difficult—but he finally figured it out. My art floozy is Christian, a.k.a. Husband. Art floozy is a term used by our friends, Denise and Dan, to describe an artist’s assistant. According to Denise and Dan, the uniform requires a feather boa. We do not have feather boas—who does these days?—which is fine as there is a high probability that a boa would just get in the way of all the gluing, stretching, stapling, stringing and nailing which is required for each panel. Christian wears his work worn khakis, his tried and true Musketaquid t-shirt—he has three or four of them—and his wood shop clogs. Still a pretty good work outfit.
I am about to start the final panel. I have been wiring #nebmeds for nine months. It takes up several hours of each week. Some weeks are faster than others. If Emlen is on the inhaled antibiotic Tobramycin, I can get away with just one long afternoon a week of wiring. However, if it is a Cayston month, the other inhaled antibiotic, I wire for several afternoons a week. Mounting one day of Cayston to the canvas, with its extra six little vials per day, can take up to thirty-five to forty minutes.
When the piece is finished, I hope that I will be able to find a wall big enough to display it. Allston? Each panel measures seventy-six inches tall by fifty-eight inches wide. They are big. The entire project takes up most of our living room, which I suppose is appropriate as that is the room where Emlen does all his breathing therapies. We use it for little else. Even though the panels are scattered about, the whole thing, together, is pretty powerful. To have all the panels on one wall as intended, that will be something.
My art floozy is currently working some connections—it seems that art floozy also means manager—and I suppose I need to start reaching out to the art world.
I am stuck on one thing though, and I realize this might be putting the cart before the horse, what do I write in the little blurb that is placed beside the project? I know its main purpose is to introduce Emlen and me and to explain the art work’s significance. How detailed do I need to be? When my friends stop by the house and happen to see the whole thing, they have lots of questions.
I answer them:
“Why is it organized the way it is? How is it a calendar?”
Each panel contains three months; each month is made up of three columns. The piece begins in January and proceeds in calendar order. Each month with an extra set of vials wired below the main grid is a month with thirty-one days. (Remember that little ditty, “Thirty days have November, April, June and September. Of twenty-eight is but one. All the remnant thirty and one”? That should help.)
“Wow. It is so ordered. Why did you use a grid system?”
My master’s degree in architecture taught me that one of the ways to design well is to establish a structural organizational system and build on it, adding layers, thus manufacturing a design rich and full of depth. The grid is an elemental way to do this, and it plays well with the ridged requirements of cystic fibrosis medications. The everyday #nebmeds need to be done twice a day, religiously. However, when Emlen is sick we add more sessions with more vials. Life gets a little unruly trying to fit everything in. I feel the grid demonstrates the required structure of the everyday medications while also providing a base for the layered chaos of all the extra #nebmeds. (I have OCD tendencies. I like things to be uber organized. Most of you know that already.)
“Why did you use burlap?”
Burlap is the work horse of fabrics. That is what is required to take care of someone with cystic fibrosis, consistently reliable, ever present. Or–another interpretation, and I suppose I change my answer depending on the sensitivity of the person asking—while burlap is tough it can decompose easily if not cared for or pre-treated when exposed to external elements, like cystic fibrosis lungs. (I like the smell.)
“Why do you use two types of wire?”
I chose to use the black annealed wire for the #nebmeds that Emlen does twice a day, every day. These are the hypertonic saline and the Pulmozyme vials. I used copper wire on the vials that are inhaled in addition to the twice a day #nebmeds. These are the antibiotics Tobramycin and Cayston. Also, if we have the time or it is needed, we squeeze in a midday round of hypertonic saline. (I would have used all copper—it is my favorite—but it was too shiny for a chronic illness piece.)
“Why is there a pink vial?” (This is the most asked question I have had.)
There isn’t. It is no longer part of the project. It was an Albuterol vial from a clinic appointment. I was unsure about whether or not to include it as it was not part of Emlen’s daily routine. At the next clinic appointment Emlen was given inhaled Albuterol again, but the vial was tossed before I could grab it. Now, I am only wiring #nebmeds we do at home. The pink vial has been removed. (I did not feel like rummaging through the hospital garbage.)
“How did you come up with the idea, or any of your ideas?”
The ideas just pop into my head. Re-read the above, the creative mid-life crisis part. (I stopped drinking alcohol. My mind is a lot clearer.)
As an art history major, I feel that people should figure out significances for themselves. They should puzzle out the rhythms of a work. They should view, discuss and conjecture on their own. Should I provide the answers to these questions on that little blurb? Or am I being lazy, unwilling to write about my art? Writing about art is hard. Really hard.
I need to go to a museum, to read the blurbs beside the art, to see how it is done. I rarely do that, read the blurbs. When I view art, I usually do not want to be swayed by anyone else’s opinion. Maybe now it is time.
Alright. That worked. I can write about my art.
Let’s see what I can do with “The Laundry Photos, 2019, a.k.a. Sisyphus is Not a Myth”.
I have a confession. I am wearing a linen dress. It is after Labor Day. At any minute, I am expecting the arrival of the fashion police, who will revoke my privileges at all of the highfalutin societies and clubs to which my family belongs. It is going to be eighty-six degrees today and the weather, going forward, should be on the warmer side. Social norms be damned. I will continue to wear linen. We are about to follow the footpaths of Indian Summer.
Those are not my words, “the footpaths of Indian Summer”, but the words of Ori. When she said them, I immediately saw soft footed humans walking in the warm autumn air surrounded by yellowing ferns and dappled light created from falling leaves, the forest hinting at what is to come. It is my favorite time of year. I held onto the words, because it was easier to focus on their image than the pain inflicted by Ori’s elbow, or by her knee. I am not sure which body part she was using as an implement of torture because I was lying on my stomach. Ori is my newly appointed structural massage therapist. My shoulder is frozen again, and rather than going through the proper channels of referrals, physical therapy, dry needling and all those exercises which did not work the last time, I made an appointment with Ori. “She is who you see when it is really bad,” a friend of mine once said.
When Ori finished, she promised swelling, bruising and the eventual return of mobility and blood flow. I go back next week for more. The deep layers of muscle are highly calcified and still need to be released. At least that is what she says. After that I only need to see her when I feel a twinge, which, at this point in my life, is all the time.
I will stop eating dairy, to avoid the calcified muscles, but that probably does not work.
I think I shoveled too much dirt this summer. However, it was worth a stationary body part. The yard is finally coming together. I moved countless plants, planted three Japanese holly hedges, flattened out the ten-year-old dirt pile in the back forty to make way for our new fire pit’s wood storage and then I moved plants again. Because of The Never-Ending Yard Work List, I wore shorts this summer, not my linen dresses. They hung, in the closet, untouched. Now with the weather the way it is I am determined to get some use out of them. I think I might figure out a way to wear linen all winter. Clothes should be seasonless. That would be efficient and have the bonus of cost savings. I will layer them over jeans and under sweaters while wearing boots. This will keep up my boho-hobo art look; a look, by the way, that will never be accepted by those fancy fashion police.
Or, maybe it will.
Recently, my father told me that the Menlo Country Club now allows denim at pool functions. I laughed, because for years I rolled my eyes at the “no denim at the club” rule, a rule so strict that even denim dresses were forbidden. Even denim couture was off limits. I like denim. It was not allowed in high school, which is why I now wear it all the time. In my younger days of small budgets and even tinier closets it was always hard to come up with outfits for those pool side events, because I had lot of denim.
I should have had linen dresses back then.
My father went on to say he is opposed to the new dress code. He has no desire to see middle aged Silicon Valley types running around in their two-hundred-and fifty-dollar skinny jeans. He wanted to know what happened to the classic khaki. I have noticed the Preppy Handbookis in vogue again. Are we swinging back? Who knows where things will land, skinny pants and top knots or tartans and tweeds? I am fine as long as everyone is free to express themselves as they see fit. I do have my limits. I will draw the line at wearing yoga pants for fashion and sporting shorts in January. Yoga pants are for yoga and shorts in January are ridiculous. How the teenagers do it, I have no idea.
I sound like my father.
How did you fare this summer? Never mind, I know the answer. It was pretty tough. I hope with school starting you will have more of a routine and feel less unmoored. I can’t believe you have been teaching French for twenty years. I still think of your map gig as if it were yesterday. The atlas you gave us is in the car, just in case all of our technology breaks. That will be a learning moment for the kids, reading a map. Also, kudos on your new found strictness. Do you wear your cat’s eye librarian glasses? That would be awesome. Tap your foot a lot. I think I might send you a ruler to complete the look. Emlen and I have to do some Amazon shopping this evening. I will put one in the cart.
My summer was filled with weekend trips to the woods (lovely), swimming, swim meets, ribbons and stroke and turn judging (fine) and lots of trips into Boston to see doctors (ugh). The big news is that the Mass Eye and Ear (MEE) speech team fixed Henry’s paradoxical vocal fold motion (PVFM). Not only is his breathing better but he can also burp. Apparently opening up one’s vocal cords allows the gastrointestinal gasses to flow upward and out.
Yay. More boy noises in my house.
After several sessions at MEE, where Henry ran stairs while breathing through straws, combined with hours of home exercises, he has been discharged. Now we just wait to see if he can swim the 200 freestyle without passing out. I wonder what his swim coach will think when he gets out of the water and starts breathing through a straw rather than grabbing his rescue inhaler? The rescue inhaler has been such a Henry-fixture for years. I have a December appointment with the speech team in the books, just in case. In the meantime, Henry has to keep up the breathing therapy.
Mental note: I need to put Stop and Shop milkshake straws on The Grocery List.
(I capitalized grocery list because it is a thing in this house, along with The Never-Ending Yard Work List, which I capitalized earlier. The To Do List and The Got to Get My Life Organized List are also things. Me and my Lists.)
As of this week we are in full swing. The Evening Run Around has begun. Five days a week. Not one night off. The laundry will never be folded.
For your pleasure: The Evening Run Around*:
(The Evening Run Around is capitalized too, because it is a thingas well.)
4pm: Emlen, swim lesson with Coach Hillary
5pm: Henry, high school preseason swim
4pm: Henry and Emlen, therapy appointment in Lexington, alternating
5pm: Emlen, preseason swim (Emlen will be late every other week)
4:15pm: Emlen, drum lesson
5pm: Henry, high school preseason swim
2:40pm: pick up Henry at school**
3:30pm: Henry, math tutor
5pm: Emlen, preseason swim
6pm: Henry, sax lesson
2:40pm: pick up Henry at school**
5pm: Henry, preseason swim
7pm: Henry, pep band at home football games
*This does not include extra band rehearsals for the upcoming Fall Concert, pep band practice nights, any middle school social activities, and, of course fitting in all of Emlen’s breathing meds and vest therapies. When swim team starts in early October, just add more swimming to each day. Fortunately, the pool is only 4 minutes away. I have that going for me.
**The tenor sax is too big to schlep back and forth on the bus all the time. Its case could use some wheels or a grandma type grocery dolly basket thingy. I wonder if Henry would use it.
If you noticed, Henry is back in the band. It was unexpected. Last spring, he announced that he was going to quit the saxophone and take up other musical endeavors, like learning to play the guitar. Christian and I tried to persuade him to keep up with his saxophone studies. We had countless discussions about how music is so good for brain development, that all the kids in the program are super nice and how he has a natural tone that some musicians never develop; but he is almost six-foot-three-inches-tall and ready to make his own way in the world, which, he decided, he would do with a guitar.
Then, the day before the new school year began the band director offered Henry the empty tenor sax chair in both concert band and jazz band. After hours of debate, which was torture for us, because we knew what he should do, but as good parents of an almost six-foot-three-inch-tall sophomore we had to let him figure it out on his own, Henry accepted. He loves jazz and confessed he was going to miss it.
Ok – actually, I have mixed feelings about the band gig. While I really want Henry to continue to be part of the high school arts scene and explore his love of music, I had been looking forward to a slightly more relaxed autumn, with less driving around.
Many more trips to the gas station for me.
A few days ago, Henry asked for sax lessons. He wants to get caught up. What can I do, other than find a teacher and try to figure out how I am going to eat dinner on Thursday nights?
When does Henry start driving?
One positive note in all of this (if you can call it that, and I am, as I am trying to be a glass-half-full kind of person) is the town’s newly instated curfew due to the close proximity of the EEE virus. All activities, town and school related that take place outside between the hours of six PM and six AM have been suspended. I believe Friday night football games have been cancelled, which means no pep band performances for Henry, which means no mad dashes from pre-season swim practice to the high school, which means no late-night pick-ups from the post-game parties. At least until the first frost. It is bit of a reprieve.
Because of all of this craziness I have to erase our penciled-in playdate for Saturday. I am so sorry. I was ready. I even have a box of chocolates for us to eat while the kids are not looking. I know Miranda is pretty good at sniffing out sugar, so I got a big box. I would mail it to you, but with Indian Summer fast approaching I am worried that they will melt en route. I will keep them until we are together again. Late October? Also, I will bring the ruler.
Oh – and as for the goldenrod discussion earlier this week. It is not allergies. It is a cold. The Annual Back to School Cold. (Again, capitalized. It is a thing. Every. Single. Year.) For three of us, it camped out in our noses for, maybe, thirty-six hours. Emlen’s cold went straight to his lungs. This is normal for his CF. He is now in battle mode. We had to skip pre-season swimming last night to ensure a lengthy session on his vest, and I have to pull him out of school for a bit to fit in extra mid-day breathing therapies. I think he will be OK given that he is inhaling a gazillion vials of antibiotics daily. If not, just add another trip into Boston.
Say hi to Miranda, Iris and Tim,
Henry has paradoxical vocal fold motion, or PVFM for short.
Three percent of athletes with exercised induced asthma suffer from it.
Apparently, Henry is an athlete.
Hope you are having a good summer.
Say hi to Miranda, Iris and Tim
I am not sure where this is going. There is a lot going on. All of a sudden.
I had been flying a little too close to the sun earlier this spring. Everything seemed to be on track. Weather: April showers bring May flowers. Projects: our new front yard is going to be great, new trees, new hedges and new lawns. Health: even though Emlen was pretty sick over April break, which involved a visit to the pediatrician’s office for strep and flu tests and then an emergency trip to Children’s Hospital just to make sure we were doing all that we could for him, he managed to get over it. On his own. It was work without the antibiotics and it made for a pretty crappy spring break, but we had the time for the extra nebulizer and vest treatments. What made me soar were the results of his throat culture from that emergency appointment. They were negative.
“Negative of everything,” the doctor said.
“Negative of Everything,” I repeated.
I felt relief in every fiber of my being as Emlen headed off to NYC with the middle school Wind Ensemble a week later. We had not had a Negative of Everything throat culture – well, since I can remember. He was healthy, in great spirits and ready to be a tourist. He was still most excited about the motor coach, with its Wi-Fi and movies. When he arrived home, he announced that he now loves ThePrincess Bride, one of the many movies featured on the bus. Before this journey he had refused to watch it, even with the rave reviews from just about EVERYONE…who doesn’t like The Princess Bride? “It is boring,” he argued, right up until the bus pulled out of the parking lot. Now it ranks up there among his favorite movies.
The trip was so well run, so action packed that in three full days the kids saw everything there is to see in NYC. Almost. They missed the Empire State Building, the Statue of Liberty, the MOMA and a few hundred other art museums. (Reasons to go back.) The band managed to squeeze in lunch at Grand Central Station, a few hours on Times Square, dinner at the Hard Rock Café, the New York Philharmonic, Central Park, the Natural History Museum, Trinity Church and Wall Street Station, the World Trade Center, the 9/11 Memorial, the Broadway play Mean Girls,which if you ask Emlen to sing the song “Karen” for you he will happily do so, and then, finally on the last day, the band participated in a workshop with Peter Boonshaft and gave a concert on Lincoln Center Plaza. Emlen arrived home, healthy, jazzed, and, even … dare I say it? ... a bit manic as the weekend’s adrenaline continued to course through his system. Then he slept for seventeen hours.
Eventually my Negative of Everything high subsided, like Emlen’s adrenaline, and I floated down to the stratosphere. How could I help it? How can anyone help it at this point? It is mid-May and it is still raining. It is still cold. The flowers are trying to bloom. And it is really muddy; a wear your rubber boots every day kind of muddy. I constantly hear people complaining about the weather. We have had our fair share. Secret: even though gray days can be depressing, and they bring me down I kind of like them. They are little quieter, a little less frantic, drink lots of coffee type of days. Also, I have pretty awesome up-to-the-knee-made-for-the-mud mud boots. They are French. And really muddy. I wear them everywhere. I wore them to the Concord Center for Visual Art’s Annual Concord Carlisle High School Art Exhibition and to the Colonial Inn for lunch. I paired them with a dress. The dress’s pattern has muddy overtones and coordinated well with the boots. They are also great in the yard for keeping your feet clean, warm and dry while moving bushes and you know that I move a lot of bushes. I found them on Zappos after I ordered about fifteen pairs of boots and turned my living room into a shoe store. This is how I buy shoes. I try them on for days, keep the pair (or two) that is fantastic and send the rest back.
However, last Thursday, I plummeted to the ground, with a huge muddy splat. My flying days are over. Emlen’s throat culture test results from the last follow up clinic appointment are not good. It is a little overwhelming.
The staphapseudococcalgillustreptaspernomous * is back.
OK, not really. That is an amalgamation of all the names of all the bacteria Emlen has had to fight over the years. Until recently I have not been able to keep track of them. I have always been more concerned about what I need to do to fix things. I know I have mentioned this before. However, I am beginning to learn the names and characteristics of these bugs. I can even repeat them if I need to. However, I cannot spell all of them without a little help from Google.
Emlen has two different bacteria growing in his lungs. Stenotrophomonas (I Googled that spelling) which, seems to be a version that is not sensitive to any oral antibiotic. (The pulmonologist is going to do some research and get back to us on that.) And pseudomonas has reared its ugly head. (I knew how to spell that; I did not Google it.) There is just a smattering of them, but they are still present. It is not the super bad one with a mucoidal coating which is resistant to most antibiotics. Emlen had that when he was two. We beat it. Although his pulmonologist permanently holds it over our heads with a “I know it is in there. It never really goes away,” disclaimer.
We have been trying to eradicate the new pseudomonas since October. I thought we had when we got the Negative of Everything throat culture, when I flew into the sky. You want to get rid of pseudomonas as quickly as possible since at any minute it could mutate into the mucoidal version, and then you are in for a super long and hard End Game ** kind of fight.
After talking to the doctors, I managed to get all the inhaled antibiotics ordered in one afternoon. That is a record. We start taking them as soon as they arrive: one month on Tobramycin (Tobi) and the next month on Cayston. On and off. For a year. When I informed Emlen of this, he started crying and crawled under the guest room bed. That is his go to place when he is upset. He is getting a little big for it, but still manages to squeeze in.
After coaxing him out, he explained to me that he was upset about the Cayston, not that he is incubating pseudomonas. The last time he took Cayston he was three-years-old. He does not remember it. It uses a completely different delivery device than his other daily inhaled meds. I dug out the old equipment. Pieces are missing and the batteries had leaked, leaving those fuzzy acid crystals growing over all the connectors. We need a new one, but the visual did help to waylay his fears. I also found a photo on Instagram of another kid with CF demonstrating how to take Cayston. That helped too.
Fortunately, Emlen has a sinus surgery follow up appointment this week. I figure I can squeeze in a Cayston lesson at the CF clinic, since we will be in the area anyway. I neglected to do the sinus surgery follow up appointment in the fall, when I should have, because as soon as I got Emlen home, I turned around and headed back to the hospital for Henry’s sinus surgery. Then we jumped into the mono thing and shortly after that there was the appendicitis incident (more on that later).
Henry had his final sinus surgery follow up appointment a few weeks ago. The doctor said the inside of this nose looked so good that he “never ever” wanted to see him in the office again. Such good news. First, because Henry had been dealing with sinus issues since fifth grade and they are gone. Second, because we have to add a speech therapist to his medical roster. Henry’s vocal cords seem to close up mid swim work out, usually right after his exercise induced asthma kicks in. Then he really can’t breathe. It got worse this year with high school swimming. The speech therapist will teach him to recognize the onset of the symptoms and how to control them. Apparently, this is not uncommon among athletes. *** I am glad there is a treatment because I think it is important that Henry can breathe, but it means several trips to Mass Eye and Ear this summer. That place is harder to get to than Children’s Hospital. So, one less doctor is a good thing.
I am sure Emlen will still need to see the ENT … people with CF usually do.
What troubles me with all the health issues is the house potentially breaking. I still stand by my theory of appliances and/or the house falling apart when one of us is sick.It has not stopped.
On Christmas day the microwave broke, again, just as Henry announced he had a sore throat. Then, as he was complaining non-stop and unable to eat or drink anything, the kitchen faucet started leaking. Drip. Drip. Drip. And so on. After a trip to the pediatrician’s office on a Sunday (ugh!) and visit to the ER on a Tuesday evening (another ugh!), we figured out from a simple blood test that Henry had mono. I think I am allowed to tell people this now. At the time I was not, because of the whole kissing disease stigma.
After a couple of ER saline boluses, some steroids and days of sleep Henry felt better. But by that time the faucet was a steady of stream of water. All I can say is that a steady stream is much less annoying than dripping. Henry recovered pretty quickly. He was back in school in a week and in the pool in two weeks. Our microwave recovered quickly too. I bought a new one and paid to have it installed. As for the faucet, I ordered a new one from Amazon. It was at our door in twenty-four hours. Christian installed it.
Then a month later our dishwasher broke. It did that thing where it just wouldn’t stop running. It just cleaned the dishes for hours. This time there was a little water on the floor. As I mopped it up, I wondered out loud to anyone that happened to be listening, “Who is getting sick now?”
Seventy-two hours and a misdiagnosis later I was in the OR for a ruptured appendix and an abdomen infection that you wouldn’t believe. It took six liters of water and days of IV anotbiotics to clean out my insides. (More on that shortly, I promise. I am still processing my almost near-death experience.) By the time was I home from the hospital and well enough to get out of bed, the dishwasher had been repaired. That was nice.
Henry just got home from school. I have to take him to the pool to finish his employee paperwork. He is going to be a lifeguard this summer. Crap. I just remembered I need to get his passport out of the fire safe. He is going to be late…
Hi to Miranda, Iris and Tim
P.S. Emlen’s appointments at Children’s went well, although Emlen did not wear a coat. He was pretty cold walking around the campus. I told him to, but he is twelve and ignores me a lot. Anyway, the ENT said he “never” wanted to see Emlen again unless there was something going on. Emlen did not get quite the “never-ever” that Henry got a couple of weeks ago, but I will take it. The CF clinic appointment for the Cayston lesson was good too. I remembered, from way back when, how to administer the drug. But most importantly I learned that if I forget any of the steps there are quite a few instructional videos on YouTube. Thank God for YouTube; you can figure out how to do anything there. Emlen might have fun with this one, if taking an inhaled antibiotic three times a day is fun. To mix the medication he will have to squirt a saline vial into a powdered filled glass vial and shake. **** Just like a mad scientist. He can mix vials while he changes the rubber bands on his new braces. Yes, braces this summer too. I will set up a Dr. Frankenstein-type lab for all the equipment. It will be on the ground, because that is where we are. Firmly.
*First used in Blog Post “Good News, Bad News, Good News Again” (9 January 2018)
**I have not seen Avengers: Endgame yet, but I imagine, and from what has been leaked to me by the kids and social media, that getting rid of mucoidal pseudomonas in CF lungs is a similar kind of fight: casualties, exhaustion, sacrifices, and ultimately, victory. I am assuming the Avengers are successful. You really can’t leave Ant Man stuck in the sub atomic particle universe. Can you?
***This is different from something being common. Just because a thing is not uncommon does not necessarily make it common. I learned a lot at that appointment.
****Cayston is going to totally mess up The Nebulizer Vial Project, 2019. The canvases do not have room for the extra six vials per day. I need to write a letter to Paul to discuss. And maybe he could help brainstorm on what to do with the 5000 coat hangers I have sitting in the basement. They are becoming important.