That was the best weekend, a weekend in the NH woods with the ladies. It was great seeing you. Thank you so much for making the trek across New England. Reentry was as expected. The house and the men/boys were in very good shape, but there was lots of laundry. There is always lots of laundry, as you know from all of my laundry Instagram photos. Thank you for liking every single one of them. You, Denise, and Paul are my biggest laundry project fans. Henry’s friends like everything too, but I feel that the three of you actually study them.
Besides getting the laundry back on line, (so many loads) I spent Monday doing paperwork, pages and pages of paperwork. I had a lot more to do this week than just the usual sorting, filing and recycling. Emlen is headed to NYC at the end of April with the Concord Middle School Wind Ensemble. This trip, the carrot hanging at the end of a yearlong stick of music, is what convinced him to join the group. Let me correct that last statement. Emlen agreed to all the extra rehearsals, extra practicing and extra performances because they are going to ride in a big lush motor coach to NYC. He wants to ride a bus that has TVs and tray tables built into each seat. That is why he joined the group.
Emlen also had a few other questions before he said yes to Wind Ensemble:
1) Are there any other sixth graders?
2) What is the Masquerade Night? Does it require a full costume, or just a mask?
3) Is it OK that I miss all of the September rehearsals because I have my sinus surgery next week (Sept 17th)?
4) Do we take a bus to NYC? Because that would be fun.
Mr. Noce, the conductor of the Wind Ensemble and organizer extraordinaire responded, giving each question its due attention.
1. Yes, lots of his friends (I think) are there from Thoreau; Henry, Theo, Lucas to name a few.
2. This is a silent auction and concert to raise money for our NYC trip - the theme is aliens and you can do whatever you want :).
3. Totally OK. We have a Google Classroom with the music so you can get ahead/not fall behind.
4. Yes. And I think it will be fun, too. As long as there isn't some kind of loud, obnoxious singalong. Or smelly food.
The group is “doing” New York. That is the only way I can describe it. A Broadway show (“Mean Girls” I think), dinners in yummy, top-notch restaurants and trips to museums fill the itinerary. At the end of the trip, the young musicians are playing on the plaza of Lincoln Center for any passer-by to enjoy. Emlen’s teachers think this is a great way to expose the kids to performing for new crowds without the pressure of a huge unknown concert stage. Towards the end of the weekend the ensemble is participating in a clinic with some famous composer/conductor whose name I can’t remember. Mr. Noce seems most excited about this part of the trip. Again, Emlen is most excited about the bus. But, then, he has never seen a Broadway play, so that may top the bus ride in the end.
The itinerary looks so good that Christian and I squabbled a bit about who was going to go as one of the chaperones. One of us has to go to train the school nurse in all things CF. Emlen is the first middle school student with CF in forever. Christian won, if you can call it that. He will be the chaperone.
Hopefully for the next overnight school field trip, most likely the eighth-grade trip to DC, Emlen and the school nurse will be able to handle all the CF care themselves. This will give Emlen independence. He is thrilled with the idea of no naggy hovering helicopter parents hanging around. And Christian and I are thrilled that we may never have to ride on a motor coach again. I think a sing along and smelly food on the ten-hour bus ride to DC would send me around the bend.
Thus, all the paperwork. I am sure this is familiar to you since you lead roughly nine hundred and two field trips to Canada for your French students every year. I was introduced to the school-required hoop jumping medical forms for Henry’s eighth grade DC trip. So many hoops just so he could take his allergy pill and carry his inhaler. Emlen’s medical forms might as well be a novel, a long novel, like War and Peace, but even less interesting.
After filling in seven pages with the whens, whys and wherefores of Emlen’s medication they were finally ready for his pulmonologist’s signature. Emlen had a scheduled CF well check the next day, which is why I spent the whole day working on it. It was sort of last minute, at least for me. Real last minuteness would involve doing the faxing back and forth dance three weeks from now. Faxing is old technology which means I should have a handle on it, but I do not. I used to be a fax expert, but when I attempt to fax over the home land line with all the beeps, buzzes and dial tones I just get confused, or the machine gets confused. I am not sure which. Regardless I give up and ask the would-be recipients if I can just scan and email the document. But that has its problems too. There are a lot of confidentiality rules involved with emailing medical forms. Perhaps, I should get one of those turn-my-photos-into-pdfs apps and be done with it. Although, I would still have to email. Those confidentiality rules would still apply. Bringing the forms in by hand is my best bet.
We arrived at the clinic completely prepared; we hoped for a fast appointment. That is what we strive for, in and out as fast as possible. But it never happens. There is so much to do at these appointments; labs, x-ray, vitals, pulmonary function tests (PFTs) throat cultures, nutrition, physical therapy…the list goes on.
Except once. In December, we actually finished up in the clinic pretty quickly. It was just under an hour, a how-are-you-doing-let-me-have-a-look-and-we-need-nothing-extra-from-you-today kind of appointment. It was a record. Emlen and I had high hopes of being back in time for a relaxing lunch before band practice. But then, the valet parking service lost my car. Seriously, they lost it. I had to find a photo of my car on my phone and provide them with the license plate number.* When they finally located the car deep in the depths of the parking garage, they admitted that they had lost the keys too. They admitted this only after asking me several times if I had a spare set with me, which I thought was weird; but they seemed to think that this is normal, for people to carry two sets of keys with them all the time. Then they asked me if I needed my car. They could Uber me home, they said. I just stared at them, unable to respond for a minute, wondering if their Uber offer also included driving the kids to their various evening activities and then brining me back into the city in the morning to pick up my car. When I asked, they said it did not.
We settled on bringing in a locksmith to make a new set of keys. However, my keys turned up before the locksmith arrived. They were in the pocket of the valet who had originally driven off with the car. She had not been feeling well and had left for the day. Finally, with keys in hand and both of us very tired, we hunkered down and headed for home. We were also hungry, having subsisted all morning on chips and coffee. Emlen had the chips and I had the coffee. We did not have time for a relaxing lunch. And Emlen was very late to band practice.
I should get free Children’s Hospital valet parking for life.
Years ago, when we lived in the East Bay, I often had to make the trek across the Bay Bridge to see my family in the South Bay with baby/toddler Henry strapped in the back seat of our little car. I had once heard that in the very worst of the worst Bay Bridge traffic jams people had to wait over thirteen hours before whatever it was that caused the blockage cleared and people could move again. I was not going to get trapped like that – with a baby/toddler in my car – ever. I would strategically pack everything we might need for thirteen hours. I jammed diapers/wipes, toys, formula, food, more diapers/wipes, more toys, more formula, and more food into every L.L. Bean bag we owned. It was a lot of stuff for an afternoon on the Peninsula.
I had relaxed a bit from the Bay Bridge days of being a new mother, sort of winging it for these clinic appointments, because I know, mostly, where we can find more than potato chips and coffee. And I know to avoid bridges when possible.
However, for this week’s appointment I reverted to my over prepared new mother mentality. I had the medical forms in hand along with everything else we needed for a day of waiting crammed into an L.L. Bean bag, because once again I now know that you never know when you will be sitting around for a long time, waiting, for whatever reason, like the parking service madly searching for your car and keys.
I brought tons of food, probably a days-worth, so we would not have to forage. While Emlen thinks that nothing but potato chips and coffee for lunch is great, I would rather have something with my coffee.
I also brought an extra set of keys, just in case, because apparently that is what one should do when planning on using the valet service; but we did not need them. We arrived early. We had time to self-park.
And I brought a book. Normally while we are waiting around, I get caught up on Twitter and Instagram. It is a fine way to while away the minutes in a doctor’s office, but over the winter piles of books have popped up all over my bedroom. Some of the piles are made up of books I buy when a podcast that I listen to recommends a good read. Another pile reflects all the reading that I planned to do on our ladies’ weekend in the woods but forgot to pack. And then there are the new books, in a dustless pile, that I bought while we were on our ladies’ weekend in the woods because I forgot to pack books and I really needed something to read, as that is what you do when you are away with your smart writer-y literary lady friends. While the NH house’s book cases are fully stocked, they are really not up my alley being mysteries, super large print selections and some others that I do not relate to, like the maps of bird migratory patterns over the last 100 years. (Actually, that one might be interesting. I will explore it the next time I am up there.) Also, there are great book stores in the area, and I can’t help myself.
I think my house needs a library.
That would take care of the piles.
On the way to the CF clinic, Emlen caught site of the book packed in our L.L. Bean Children’s Hospital appointment survival bag and wanted to know what it was. Actually, he wanted to know what the gold tassel-y thing hanging out of the book was. I ignored the question about the bookmark and told him it was book with words in it, not just art pictures.** He laughed, which was good, because the appointment turned out not to be the best. His PFT numbers are down, again. They have been declining steadily over the last year. At the moment he has a cold and is fighting a pseudomonas infection. We knew that they would be lower, but not quite that low. Frustrating. Thus, another round of oral antibiotics, lots of vest therapy, more swimming and the crossing of many fingers and toes.
And Emlen should start working out in the gym. I think I sent you the link to Matt Purcell’s blog*** that posted the article I wrote about Emlen’s swimming and how it helps with his CF symptoms. Matt calls Emlen “Aquaman”. Matt is trying to get the word out about CF and exercise. The men and women with CF who are super healthy, even healthier than you and me, work out with weights and tractor tires all the time. I could put some tractor tires in my back yard. Maybe they could go next to the new library.
On a positive note, Emlen finally grew and gained some weight and it only took the doctor five minutes to sign the all the papers I had prepared. She was grateful that I had done the work ahead of time.
Just got off the phone with the hospital. Two of the bugs that have taken up residence in Emlen’s lungs are antibiotic resistant. His pulmonologist wants to try a different and stronger antibiotic to see if that clears up his cough and helps increase his PFT’s. We go back in May for another check-in.
I hear the garage door. The kids are home from school. I need to go check in with them. This morning I sent Emlen to school with all the original medication forms signed by his pulmonologist. I need to find out if he handed them in. It is possible that they have been lost in the abyss of his locker. I have copies, just in case. Also, I need the copies for the next organizational step for the NYC trip. I have to collect all the medicines in their original containers with the original prescription labels still attached. There are so many. The nurse may need a handcart to carry them around the city.
Hi to Miranda, Iris and Tim.
*Emlen found the photo. I was having trouble thinking straight because my car was missing, and thus having trouble navigating iPhoto on my phone. That new technology thing. And I couldn’t remember the license plate number. I can’t even remember it under normal stress-free conditions.
**I have a lot of art books too, probably too many. They are scattered and piled all over the house, not just the bedroom. I buy them after viewing a show so I can spend time mulling over the artist’s life’s work while attempting figure out how his/her work applies to me and my craft. Most of the time it does not.
*** Check out Matt Purcell's blog, bournetotrain.com
Hey, look at that.
My first magazine entry, printed in the Thoreau Club's magazine, Inspired.
Not bad for only 250 words, which, I discovered, is not a lot.
Here is the 500 word version. It was originally called "Goggles". It includes Coach Hillary who has been instrumental in keeping Emlen healthy.
When I put my boot on this morning, I found a pair of swim goggles. I guess that is better than a mouse’s nest, but it is still disconcerting. Goggles are a big part of our life. They are lost. They are found. They break. They leak. Sometimes they just wear out. I seem to spend a lot of my time watching swim websites for goggle sales. It is ironic that something which comes in and out of our lives so fluidly represents something that is so permanent.
We are a Thoreau Club swim family. I should have one of those oval stickers on the back of the car that says “Swim Mom” or “Swim Taxi”, but I figure the smell of chlorine which wafts from the windows might be enough to clue in the world. I signed Henry up for group swimming lessons when he was four. My goals for him were water safety, muscle conditioning and learning a lifelong sport. With his first pair of goggles secured tightly on his face – so tightly that he had raccoon eyes for the rest of the day – he jumped in the water. He has not looked back at the pool deck since.
Emlen began taking lessons when he was two and a half. At that age he insisted on swimming by himself, already had a strong dolphin kick, and donned neon holographic goggles that looked like dinosaur eyes. I thought Emlen’s swimming goals would be the same as his brother’s, but for him swimming has become a necessity. At the age of three Emlen was diagnosed with cystic fibrosis*. Exercise is one of the key components of the cystic fibrosis medical regime. It helps to maintain lung function. Emlen now swims for his health.
Henry and Emlen are on the Thoreau Sharks Swim Team and the Thoreau Sharks Bay State Team. They love it. They have mastered a lifelong sport, have made great friends, and learned the value of sportsmanship. I expected all of this. But what I did not expect when I gave Henry his first pair of googles was to find an extension of our family and a valuable addition to Emlen’s medical team among the club’s instructors, coaches and other swim parents. Everyone looks out for each other.
As the boys get older and Henry heads off to swim for Concord Carlisle High School, I know the team will always have their backs. Whether it is for preparing for a big meet, receiving general life advice or shoring up Emlen's backstroke with Coach Hillary for the days when he does not have enough breath the swim the butterfly, the Thoreau Sharks will be there. At the first meet of the year, Henry’s goggles broke. Coach J yelled from across the pool, “I have a bunch of extras in my office. Go choose a pair that will work. And get ready to swim.”
*Gunnar, please take note: I did not capitalize cystic fibrosis in the 500 word piece. With 500 words, emphasizing cystic fibrosis was not needed. No artistic license taken.
Hours Emlen exercised in 2018:
4 hours running on a treadmill,
8 hours mountain biking through the woods,
10.5 hours dry land training,
16.5 hours hiking in New Hampshire,
32 hours sledding and skiing
117.25 hours in the pool, training for swim team.
188.25 hours total*
HAPPY NEW YEAR Everyone! Here’s to a happy and healthy 2019.
Make sure it includes lots of exercise!
*This does not include the countless hours of cycling around the neighborhood, scootering up and down the street, running around the backyard shooting nerf guns, playing frisbee, kicking the soccer ball, tossing a football back and forth, practicing basketball lay ups one after the other, frolicking in pools and oceans and, of course, the constant year round brotherly roughhousing with Henry.
Rob, our letter carrier, delivers the first card the weekend after Thanksgiving. It arrives on the early side of the season, I think, along with one hundred and fifty-two mail order catalogs. On the front of the card is an autumnal family portrait. The family, all five of them, are good-looking. On the back is an invitation to their annual holiday party, which is why the card arrives before we have finished digesting. It is a large party and requires an RSVP. Instead of hopping on the computer and immediately sending our response, I grab the Christmas card bowl, make room on the coffee table. I toss the card in; it takes its place at the bottom of the bowl. The season has begun.
One would think that the one hundred and fifty-two mail order catalogs are what usher in the holidays. There are a lot of them, and they never-ever stop. As the pile grows in height in our recycling bin, I am reminded of a scene from the TV show “Gilmore Girls”, where Rory and Lorelai sit in their kitchen with vessels of coffee and boxes of Pop Tarts surrounded by what looks like a year’s worth of catalogs. They verbally riff while calling the tiny number listed on the back page of each one requesting to be removed from the mailing list. It takes days. The entire episode revolves around this scene.
However, it is not the catalogs. It is the card, like a starting pistol releasing runners to sprint endless laps, that kicks off the season. I launch into the marathon of Christmas; present buying, house decorating, dessert baking, attending concerts (there are a lot this year), label making, card designing and ordering, waiting in line at the post office, moving the Elf, gift wrapping… December is exhausting. A friend of mine recently said she appreciated the fact she was not Christian, because we all look tried and stressed at this time of the year. (I believe she was referring to the religion, and not my husband. His name is Christian. Although she may have been talking about my husband. He has been pretty stressed with the end of the year wrap up at work.)
Whoops. I forgot to RSVP to the large holiday party hosted by the good-looking family.
I will do it now. Here, on the blog. Is that appropriate?
Dear Handsome Autumnal Family,
We are unable to make it to your annual holiday party. Henry has a high school band concert the same night. It is going to be a long one. I think we even have to sit through the high school orchestra’s performance.
Elizabeth and Family
That should do it. However, by the time this posts, the party will be over. I should just email now. But I am kind of on a roll. I will put it off. Again.
Getting ready for Christmas is a lot of work, but as the season draws to its climax, festivities and energy warm the house. It is fun, especially for Henry and Emlen. They love opening the advent calendar each day, decorating the tree, eating cookies, making lists, remaking lists, then announcing the day before Christmas that their list is wrong, and making another one. They rarely find an item from their final list under the tree. Amazon is fast, but not that fast. They do not seem to mind.
One of their favorite things to do is to sit in front of the fire and go through the holiday cards. I think this tradition comes from Christian’s side of the family. Henry and Emlen look, read and comment. Sometimes they roll on the floor in laughter, especially when they read my 14th cousin, Jim/Lloyd’s, yearly letter. (Yes, I have a 14th cousin. Or something like that. My grandfather bothered to figure it out. He was into the historical family tree. But I think you should be curious about Jim/Lloyd’s name, not my family tree.) It is a fun evening.
The year Emlen was diagnosed with cystic fibrosis was a pretty hard one. For all of us. Beside the emotional baggage that came with it, it also meant getting used to a whole new lifestyle, one that involved countless trips into Boston for doctor appointments, dealing with mail order pharmacies, finding room in the cabinets for the mail order pharmacies’ bulk deliveries, adjusting to new therapies, scheduling time for the new therapies, learning new nutritional requirements, figuring out what PICC stands for, and etc. By the time that first card arrived in our mailbox I was pretty beaten down.
Regardless I felt it was important to make our lives feel normal. Because that was what we were going for, to give Emlen a life with as much normalcy as possible. When Henry and Emlen announced that it was time to read the cards, I turned on the fire (it is a gas fireplace. I turn it on with a switch. I love it), got out the cookies and sat down to listen. However, about half way into it, I found myself annoyed and frustrated with everyone’s perfectly pictured year when, well, mine was not. All the cards were full of get-up and go and sparkle, a quick snap shot of a family’s entire year printed onto one piece of cardstock. “Is this real?” I wondered. “I know people deal with stuff all the time. Why do we do this, put on a show for the world?” Even our card, a black and white photo of us sitting in front of the boy’s new tee-pee, showed us smiling, happy and adjusted. We were not.
Every year I succumb to the search for the perfect picture. I start thinking about it at the end of a summer vacation when I realize we have not taken any photos. “Maybe we could do one on the plane?” I suggest to Henry and Emlen. They roll their eyes and announce I am embarrassing. Then school starts, with all its activities in the evenings and on the weekends. It is not until November when I start looking again. Confession. I look on Thanksgiving when the card companies have their sales. I ignore the family, head to my office and design the card.
Some years it is easy. Some years it is not. Regardless, it is always exciting when you scroll through iPhoto and find the perfect image. When this happens, I feel like I am going to “win” Christmas. We have had some good ones, like the year Henry and Emlen learned how to surf and Uncle Doug stood neck deep in the waves taking pictures of the boys attempting the hang ten position.
Or when I had kick ass Photoshop abilities and was able to quickly pop our photographed heads on our collaged bodies from Henry’s “This is My Family” kindergarten project.
Or last year’s card, the over-the-top-rock-star-like-photo-of-Henry-that-Emlen-happens-to-be-in, at least that is how it was critiqued to me one night. I had to use it. How can you pass up a shot from a professional photographer that captures your children doing what they love with each of their wildly different personalities? Henry, the introvert, hides from the world behind his headphones and Emlen, the Mayor of Everything, talks to everyone. It. Was. The. Photo.
I had originally planned to do something else for last year’s holiday card, something imaginative. Once again, I did not have any good photos of Henry and Emlen. I used to make all of my own Christmas cards, collaging from paper grocery bags, New Yorker doodles, old pieces of fabrics, paint and stamps. But I did not have the time. I looked back to the year of Emlen’s diagnosis for inspiration. I was in my head a lot then. I go there when life gets too hard. That is when the creativity happens, and that year it was an explosion. But I was so overwhelmed I had to let it all go. I never followed through with any of the ideas.
That year we had received innumerable tri-folding cards, the ones that open up like accordions, each page more glorious than the one before, filled with tons of patchworked photos and novella-like captions. They stretched on for miles. Maybe they were a new product on the Tiny Prints web site. Everyone was using them. But my only thought as I unfolded was each one was “Five pages of perfect pictures? This year I could barely do one. I had to insist that we sit in front of the tee-pee. If you look closely you can see that I am holding Emlen still with a super tight grip. All we have done is slog through. Huh? Maybe that is our card, a documentation of the daily grind?” So, for fun, and perhaps to be a little rebellious, I sketched out our version, our “real” card, and sent if off to a friend.
(Liz, this is for you…I unearthed it from the archives. You can share it now.)
Photo of Henry in the pool with his PRIVATE swim instructor Kelly:
Caption: Henry loves swimming. He is finally willing to put his head underwater. His instructor is in the pool with him every lesson, helping him work on all his strokes. With a lot more hours, he may have a fighting chance to not come in last in the back stroke while competing on the summer swim team.
Photo: a large close up of Emlen and the staff at the CF Pulmonary Clinic.
Caption: Emlen is doing great this year thanks to the staff at the CF Clinic at Boston Children’s Hospital. Nurse Kate was instrumental in helping us collect all of Emlen’s poop over Thanksgiving. Such a great family activity. We are now on our way to figuring those nagging malabsorption issues.
Photo: Family shot of us in front of Boston Children’s Hospital.
Caption: We are here so often, that when we have to spend the night, they usually upgrade us to the corner room near Dan Farber’s roof top helicopter landing pad. It is such a treat for a little boy to watch the helicopters while he is poked and prodded all night.
Photo: Group photo of Henry’s and Emlen’s helpers that visit us on a weekly basis.
Caption: Henry’s occupational therapist, Shannon, has been working her magic with Henry since he was five. Hand tremors be gone! He can now hold a pencil correctly and write clearly. Shoe tying is next. It will not deter him. Rachel, Emlen’s physical therapist, comes once a week to listen to Emlen’s lungs and provides chest physical therapy whenever we need it. I have come to rely on her as the first line of defense for CF exacerbations. Jen is Emlen’s speech therapist. She visits our house two times a week. Emlen did not talk until the age of three. Now all we have left are his “S” words. Well done. Finally, Dr. Glazier and his staff at Concord Hillside have our backs for the little things like chronic sinus infections and that pesky bronchitis that plagues the boys all winter. We are so lucky to have them nearby and to have the office open on holidays and weekends. A holiday would not be complete without a trip to see the doctor.
Photos of Christian and myself. Christian either on his phone, at the office or the airport. Maybe a triptych. Me, smiling in the laundry room or at the pharmacy.
Caption: Christian and I continue to plug away, trying to enjoy life. Christian’s job continues to be stressful as he survives one reorganization after another. It seems like he has a new position every three or four months. We work on our house on the weekends, which after three years of constant repairs, still leaks and is not decorated. So much work ahead. Will it ever end? I have come to the conclusion that I was much too old to have children when I did. To compensate I have started an HRT regime and am now taking a good old-fashioned selective serotonin reuptake inhibitor. Laundry every day and cooking dinner for children who hate everything is so much fun now. Go western medicine.
I thought something like this would be good for last year, but before I started writing I looked into the cost. It was too expensive, even if I bought it during the half-priced Thanksgiving sale. Base pricing began around $2.69. Who has that kind of holiday budget, especially when one’s children keep rewriting their lists? After brainstorming, I came up with simpler version, narrowing our five-page life into one. Flu Shot Selfies. All four of us get the shot every year. It even had a message that I feel strongly about. GET YOUR FLU SHOT. And if we all wore a blue shirt or something like that, I could easily coordinate the card.
I managed to get a photo of Christian and Emlen.
Henry and I were proving to be a little more elusive, but I was determined, even if I had to stage the selfies. Then I had coffee with my photographer friend. She was horrified. “People want to see nice things. We have a friend who sends out photos of his medical drama every year. My husband and I flip a coin over who has to open it. It is so depressing.” Then she air dropped the over-the-top-rock-star-photo-of-Henry-that-Emlen-happens-to-be-in onto my phone. “Use this. It is yours.”
I am in the same boat this year. I had a hard time finding one good picture. We choose to stay home this summer and swim. We did not go on a big fancy vacation. We only had a few weekends away. And I am still trying to figure out my camera. A lot of shots just do not come out the way I want them to.
I thought about doing the tri-fold card again. Nothing has really changed and with just a little bit of editing, we could use the same layout that I sketched for Liz ages ago. I explored the idea. It pretty much wrote itself.
Henry is still swimming. He is on the high school swim team. His coaches say he has a phenomenal freestyle, but his flip turn is a C+. He is now forced to do 100 turns at practice every day. In spite of his turn he manages to swim the 100 Free in 55 seconds. That is fast for a freshman. Not Reese Stevenson fast, but fast enough. He should be proud of himself. I assume once he has fixed his turn, he will be even faster. On Friday his 400 Free Relay qualified for States. Yay! That means the early morning practice schedule now extends into February break. Yay?
We still rely heavily on the CF Clinic. We visit them all the time, like every other week, for coughs, malabsorption issues, more coughs, to see the GI doctors and the ENTs, surgeries, IV antibiotics. (The list goes on.) We will end the year like we started, one week before the winter break, with a follow up for Emlen’s pseudomonas infection. And, at some point we will have to schedule a stool sampling weekend. New Year’s? This time I will not have Nurse Kate helping me through it. She works with the CF toddlers. Emlen is now eleven. I am on my own.
We always get the corner room on 9-South when we stay at Children’s. It is large and spacious and great for visitors. Also, the parent cot mattress is thicker than most. Along with a view of the helicopter landing pad for entertainment, Children’s has upgraded their media systems and now sports interactive TVs, PlayStations and Wii consoles. The food is terrible, but it is a hospital. It should be terrible. I survive on butter packets and coffee when Emlen and I stay there.
Specialists still help us out with the kids. Our beloved Rachel has been replaced with a machine, the Vest. It was a sad day when insurance announced they no longer would cover her, but I have become more confident in my abilities to judge Emlen’s coughs. They were right. We do not need her. Emlen now talks. In fact, some days he does not stop talking. Never. Ever. No more speech therapist. Henry has a math tutor, because who doesn’t need a little extra help with numbers? Both boys take music lessons. And of, course, Coach Hillary and Coach J from the swim team are all about keeping Emlen healthy with tons of exercise. More swimming makes more mucus coughs. Although I think they let Henry down a bit with the whole flip turn thing. Did I mention it is a C+?
Christian and I are pretty much the same. Christian has a new job at a new company which is growing, not downsizing. He spends 2.5 hours in the car each day. I have started writing because, apparently, I have a lot to say. And I am getting back into my art, but with a different approach. I am elevating my ordinary and every day mundane tasks. I still do laundry, but now I document the process. I plan to put together a giant photo collage. Laundry three times a week, fifty-two weeks in a year equals … (Maybe we should ask Henry’s math tutor. I will work it out later. I just worked it out. I might have to do several years of laundry documentation. Apologies to my Instagram followers). And we are STILL working on the house. It does not leak, at least not as much. It is mostly decorated. We should finish up the landscaping this summer. If anyone could recommend a good house painter, that would be great, because that needs to be done too. It is never ending. Did you read November’s blog post? Never. Ending.
Yet, once again, I stumbled with the tri-fold card idea. It is still not in my budget. And I did not think I had the time to gather all the photos. So, I resurrected the Flu Shot Selfie holiday card. We can tell everyone to GET A FLU SHOT. I know some people do not. Not getting the shot is such an unnecessary health risk. As I was putting it together, I found this photo, which made me laugh. It is how I feel sometimes: slightly beaten, but ready to do battle over and over again. It took a bit of work, because the resolution was not great, but I think I got it.
This is our Holiday Card for 2018.
I had a pretty good photo of Henry and Emlen. They look happy, healthy and well adjusted. I think they might be.
I will mail it tomorrow.
Do you remember the car I had in the 90’s, not the metallic baby poop brown VW Rabbit, which was a great color because you could never tell if it was dirty, or the Subaru, the one we named the “Enterprise” because of its glowing digital dashboard, (that was the one where I had to pretend I was an idiot when I needed the oil checked. The front hood was rusted closed and required a mechanic to open it. “Could you check the oil please?” “Sure, pull the release lever.” “Oh. I am. I think it is stuck…Let me try from a different angle.” And so on. Every other month. A different gas station every time. I miss full service gas stations) but the teal green VW Golf? Do you remember that car? Maybe I had it when we went through that really long period of just missing each other every time one of us moved: me to SF, you to Telluride, me to St. Louis, you to SF, you to New England and me back to SF.
The Golf was a great car, my first new car. My dad bought it for me when I moved back home after graduating from college. I think he got tired of sharing. I drove it across the country three times and once up to Seattle. It even came with a Mexican tarantula which peeked out of the air vent one day while I was cruising down the freeway. It meandered across the dashboard and crawled back into the vent on the other side. I never saw it again, but always assumed it was there, at least in spirit. The car embodied the old VW slogan, “Farfegnugen,” and it had a solid sound system for blasting “Blues Traveler” while driving up and down Rte. 280. So much fun. Especially with the sunroof open. By the time I donated it to NPR, it was fifteen years old and so noisy that the neighbors on our quiet street did not bother setting morning alarms. They knew the Golf would wake them up when Christian commuted to his early meetings.
I took really good care of that car. I had too. Very early on, I realized that if I did not give it the attention it thought it deserved, it would break. Something would go wrong. I am not talking about ignoring services or dealing with the warning lights that came up occasionally. I did all of that. It needed emotional support, or it would react. Once driving from Virginia to South Carolina, our plans got all twisted and rather than doing the trip in two days we had to do it in one. Half way to Beaufort, the Golf dropped its muffler. We had to find a replacement in a junk yard just outside of Hilton Head. As the mechanic said when he lit his torch and went to work, “You don’t see many of them VW’s in these parts.” Or if there was a place for it to park inside overnight and it did not make it there because I was rushing, or the space was full of projects (like curing salami on a huge drying rack or constructing an enormous model for an architecture studio class) it would break down. Timing belts would snap, oil caps would leak, tires would go flat. This really happened. Every single time. When we moved to the East Bay, we did not have a garage. I was a little worried. But as long as the car was washed on a regular basis, it seemed happy.
Thinking about it now, maybe the Mexican tarantula was the car’s spirit animal. I know spiders work hard, but I am sure that they would not want to do a two-day drive in one day or be left outside overnight in the cold. Sometimes I had vivid dreams about opening the car’s hood. Huge hairy spider legs of would push out from underneath the metal plate as eight hundred eyes gleamed and twinkled from the darkness of the engine. It certainly made me a little edgy when I had to check the fluid levels.
I think our house is the same way. We have always worked on it. You know – the constant flow of projects that is our life. I can’t help it. “Imagine how much better the lay out would be if we just move this wall.” That is my mantra. However, this fall, we took house project vacation. We knew the medical stuff was going to be a lot. As the season got busier and busier with surgeries, appointments, follow-ups and phone calls the house started falling apart, one thing after another. Seriously, it seems to be emotionally needy too.
I am just going to list all the items that broke and required repair this fall. It is more efficient that way. I hope, that by acknowledging them, the house will feel loved, or at least paid attention to, and start functioning on a “normal” level, with only one thing breaking every quarter or so. I could live with that.
First, the weed wacker’s clutch worked itself loose around the time of Emlen’s sinus surgery. Christian rebuilt it. I was not really affected, other than trying to figure out if we could live without one. Christian said no. It was necessary. Actually, he looked at me like I was crazy when I suggested we just throw it out and move on. (It cost $0 to take it apart and put back together.)
Shortly after, the backpack leaf blower started acting up. This was also around the time of Emlen’s sinus surgery. I am not really sure what was wrong with it. Christian took it apart, repaired it and got it running again. I spent the two weeks it was down contemplating raking an acre’s worth of leaves and going over our budgets to see if we could afford to replace it. (It cost $0 to fix it.)
Then the refrigerator door closer spring snapped at about the same time I was coordinating Emlen’s post-surgery IV antibiotic regime. I ordered the part and Christian replaced it. It took two seconds to put it back together after waiting ten days for the part to be delivered. With no spring to sync the timing of the doors closing, we had to shut the panels in a certain order or the fridge would beep. Loudly. Really loudly. And angrily. But it is fixed and better than ever. (This repair cost $14 and we have an extra spring, just in case. They come in packs of two.)
On the day we were told that Emlen’s latest throat culture had grown pseudomonas and we would have to embark on a yearlong course of inhaled antibiotics coupled with a few rounds of hospital stays and more IV antibiotics, the dishwasher wouldn’t stop running. Yes, you read it right. It would not stop. I had set it for the Speed Wash Cycle which usually finishes up in an hour. It was still humming away after four hours. It took a while to notice because I was busy wrapping my head around the pseudomonas in Emlen’s lungs. It is one of the bacteria that is really hard eradicate. Sometimes it can’t be done. I called the service people and booked the next available appointment. They came eight days later. They cleaned the pump and declared it fixed. (They charge $150 to walk in the door.)
A couple of weeks later, at about the time Emlen’s new meds arrived and I was explaining to him that he would have to increase his nebulizer therapies by an hour a day, the dishwasher broke again. The same thing on the same cycle. It just washed the dishes forever. I called the repair people. They said the next appointment was twelve days out. When they finally arrived, they declared that we needed a new pump and it would take another week to order. I do not mind washing dishes by hand. Once you figure out a system it is pretty easy. The organizing of the calendar to accommodate the repair people’s schedule – well, need I say more? (Since the company had already charged us for the earlier visit and their repair was unsuccessful, all we had to pay for was the part. It was $186.)
Christian absent mindedly ran the dishwasher on the Speed Wash Cycle last week. I held my breath. It worked. I think I might relax about that, just a bit.
The kitchen faucet started dripping just as we were gearing up for Henry’s sinus surgery. Christian replaced some of the o-rings in the cartridge and tightened it. It dripped more. After some brainstorming, he decided that the entire cartridge needed to be cleaned. “Just an afternoon. Got to get these gritty bits out,” he explained. While he was dismantling the faucet the flexible hose under the sink hose blew. Water leaked everywhere. He thought the hose was still under warranty, dug up the paperwork and made plans to call Moen on Monday morning. But, in the meantime, we needed a kitchen faucet. Christian drove to ACE and bought a cheap but tolerable one. While he was installing the cheap but tolerable one, he discovered that the hot water valve for ALL the kitchen plumbing had disintegrated. This is explained where the gritty bits came from, the ones that had caused the original drips. Christian went back to ACE for new gaskets. He rebuilt the valve.
When the new hose arrived from Moen a week and a half later, Christian quickly and easily replaced the original faucet. It is so nice to have it back and working. It is like new. BTW, everyone has plumber butt when they are crouched under the kitchen sink, even eleven-year-olds. Except maybe if you are into the fashion of the moment and wear high waisted mom jeans. That would work. No chance of plumber butt with high waisted mom jeans. (The temporary faucet was $76. The parts to rebuild the valve cost $5.62. And the replacement hose was covered under warranty, as suspected.)
The week Henry was home recovering from his sinus surgery the lock on the door that we use ALL THE TIME to exit the garage and enter the shed finally gave up the ghost. Stuck. Frozen. Solid. It would not budge. Christian took it apart and rebuilt it, but in the process almost lost all the springs when it exploded over the pea gravel paths of the courtyard. Locks have a lot of springs in them. Emlen managed to find all the pieces. I was out of town for this. Maybe that is why it happened, because I left.
And finally, the microwave went dark the day after Thanksgiving. It just stopped working. No lights. Nothing. There was no medical drama at this time, but I think it felt that it was its turn. The fuse blew. Not the house fuse, but the fuse deep inside the microwave. MeMee, who is an electrical engineer, the wife of Kurt and our house guest for the holiday, and Christian took it apart. Metal housing, colorful parts and tiny pieces of microwave guts were spread all over the kitchen. After finding the new fuse at ACE, they had it running and reinstalled by the end of the afternoon. Woohoo! I had pretty much resigned myself to being without a microwave for a couple of weeks. I could have handled it, but Henry was going to have trouble. I have never seen him look so confused as he did when I told him he could not heat up his T-Day leftovers in the microwave. He would have to make a sandwich, a cold sandwich. Or use the toaster. (The new fuse cost $2.32.)
I just realized that we go to ACE a lot. Almost as often as we go to doctor appointments.
We had a great Thanksgiving. Good friends, a field trip into the city to see Christian’s office and a visit to the ICA. Lots of eating and lots of sleeping. Wow – a lot of sleeping. All of us. I had not realized how much the last few months had taken their toll. Even Emlen slept twelve hours a night and sometimes napped during the day.
Both Henry and Emlen are well. Emlen has resigned himself to his fate of an hour more of nebbies* each day. Henry has recovered from his surgery. He does not have CF. He is probably a carrier of Christian’s nonfunctioning CFTR gene. We didn’t go that far into it. He is glad he had the sinus surgery. After three hours under the knife which included a surprise adenoidectomy, his chronic sinusitis is gone. He can breathe. His face feels lighter and food tastes better, even pizza crust. He was surprised that pizza crust has a taste. He just used to eat it. And he is glad the microwave works. He started high school swimming this week. He is already hungry.
I seem to be set for the Christmas Crazies that are about to ensue. The autumn decorations are put away. (Henry and his friends played baseball with the left-over pumpkins this weekend. Pumpkin pieces litter the woods.) I spent an afternoon putting out the Christmas decorations, ordering gift cards and organizing presents. We are slated to get the tree tomorrow. And I think the Thanksgiving snow will be gone by Saturday, so we can finish the fall clean up.
My sister-in law Karen manages to get all of her holiday shopping, shipping, gifting and dispensing finished by her birthday on the 11th. It is an admirable goal. I hope to do the same this year, get Christmas wrapped up early. Then I can relax. (Ha!)
Oh. I forgot one. My eleven-year-old Toyota went in for its 80,000 mile well check (Yes, I know. I do not drive long distances.) while I was gearing up for my first ever colonoscopy. The Toyota passed with flying colors, because I have learned from the Golf that you have to take care of your cars. (I passed my procedure too in case you were curious. All clean.) However, on the way home from service, the oxygen sensor warning light came on. Christian had to drive it back to garage to have the part replaced. (The service was $315, and the new oxygen sensor part was $162. Replacing the oxygen sensor usually costs about $300, but, because the service department missed it, they gave it to us for wholesale and did not charge for labor.)
I should cut the Toyota some slack. It is an eleven-year-old car. But I was annoyed at this inconvenience. I take really good care of it. It is even clean, because it is not baby poop brown like the Rabbit from ages ago. You can tell when it is dirty. I now worry it is in cahoots with the house and becoming emotionally needy. Or maybe the Golf’s spirit spider has found me again. I will know if a tarantula crawls out of the heating vent while we are schlepping into Boston for more doctor appointments.
Say hi to Miranda, Iris and Tim,
P.S. I am so glad that Christian is able to repair tools and appliances. I know it takes a lot of time, but the money we save on service repairs calls makes it worth the effort. We have to feed Henry after all.
P.P.S. I just noticed that there is a crack in the microwave door handle. Henry is big and pulls on the door pretty hard. It is only a matter of time…or we can try to just stay healthy.
*British slang for inhaling medications via a nebulizer. “Time to do your nebbies!”
I am still Twittering. That is what I call it. Henry and Emlen get annoyed when they ask me what I am doing, and I say, “I am Twittering.”
Emlen has gone to great lengths to try to explain to me that one “Tweets” but one does not “Twitter.” “Mom, that is not how it works. You TWEET while you are ON TWITTER.” He says this with an eyeroll and a huge body shrug of frustration. Of course, this amuses me and makes me want to use the “wrong” words even more.
“Really?” I respond with a glint in my eye. Henry has gotten used to this teasing behavior from me and lets it go, but Emlen can’t. Everyone needs to be doing the exact right thing at the exact right time. He is either going to be mechanical engineer, lawyer or project manager when he is older. Although at the moment, he is proving to be a really good writer, so who knows.
There does not seem to be a verb that encapsulates what I do on Twitter, or what everyone who has a Twitter account does: the scrolling, reading, liking, retweeting, commenting, and just plain tweeting. When I look up “Twittering” in the online dictionary, the definition I get is what one would suspect, “to utter a succession of light chirping or tremulous sounds.” When I go a little deeper into the research, I am sent to Wikipedia to the pen and oil inked drawing, “The Twittering Machine,” by Paul Klee, 1922.** (Klee is one of my favorite modern artists, so I am thrilled that he has a work entitled “The Twittering Machine.”) Birds, perched on a wire branch-like hand crank, conjure images of the bipolar relationship of nature and the mechanical. One can almost hear the noise incessantly created as the crank turns and the birds chirp. The context of the drawing is left up to the viewer, for his or her own interpretation, as it is a simple drawing with no background.
I see two images immediately. In the first one my mind wanders to an old run-down farm, where modernization has replaced the old and simple tools. They rust away while birds repurpose them into the foundation of their new habitat. The second image is Twitter itself. All those tweets, repeated, noisy and constant; run by the continuous computerized cranks of people. Even the bird’s tongues take on different shapes as if each of them has their own opinion. It is as if Klee knew where we were headed. Or, did the founders of Twitter have Klee’s drawing in mind when they first started their company? I am not sure. The birds and the machine seem to hover precariously over a rectangular pit, about to fall into oblivion the moment their balance is disrupted. Twitter is large and looming; it is not going away anytime soon.
I think I like Twitter. As I mentioned before it is an incredible resource of CF information and support. I am beginning to feel kinship with many of the people I follow. The whole thing can be borderline intimate which I see as a bit weird because I realize that I will never meet any of them and everything is all out in the open.
One of the first CF-involved people I followed is a woman named Susan Perri. (@susanperri). She is very active, tweeting about healthcare and her thirty-one-year-old son who has CF. She teaches kids with autism. She is an artist. When I followed her she direct messaged (DM) me, writing about what she does, what she stands for, how she is leaving the fight for CF awareness up to the younger parents and focusing on healthcare. She asked what kind of art I do. I should have responded, but I was in day two of twittering and was a little overwhelmed. So, I will now. “Susan, you are the best. I will continue to follow you. I hope everything for you and your son. When I am art-active, I do more sculpting stuff with found objects, creating things out of what used to be something else. Thanks for asking. I really like your paintings. Art is so good for stress relief. I am glad you have that outlet.” ***
Then I found a bunch of mothers of CF kids. I really get them. They are going through the exact same thing that I am. I have good friends from the neighborhood, from the swim team and from the kids’ schools, but they do not really know my day to day realities. About a year and a half ago very good friends of ours took Emlen on a weekend long excursion. I gave her the “Emlen Manual”. It is a three-page document that sums up his care. Mostly it discusses the number of enzymes he needs to eat before each meal, because that is the most complicated part for someone who is not used to the routine. She laughed briefly at my attention to detail. However, when she returned him a few days later, her comment was “That is a lot. I am glad I had the instructions.”
I could talk about CF all the time, but it can be depressing and sometimes I need an escape. Also, if I am complaining/venting, other people begin to chime in about their daily grind. Sometimes I find myself annoyed, which is unfair since we all have stuff we are dealing with. Once I patiently listened to a mother go on and on and on about how her child had pink eye for days and how awful it was. (Pink eye is gross.) I empathized, “My kid has CF and the medical stuff is a lot.” She cut me off, saying that at least it was not pink eye. I guess, in hindsight, that was when I stopped talking about Emlen and CF.
One family I feel a kinship with on Twitter goes by @AlexsCFArmy. Their daughter, Alex, is Emlen’s age, has CF and deals with all the same stuff – the exact same stuff. I follow her ups and downs, her success on the soccer field and in school, her hospitalizations and round after round of IV antibiotics. Alex was in and out of the hospital with some pretty serious GI issues at about the same time Emlen was in and out of the hospital with sinus issues. It’s similar. You never know when you are headed for a hospital admission.
I also follow a few people who have a sense of humor about the whole CF thing. This one guy Simon Green (@simonjongreen), tweeted, “I like to giggle when I fill out a form asking for accessibility requirements and I have to write ‘quick access to a toilet.’ It is funny because it’s true and references my love affair with the commode.” I laughed out loud thinking that this is one of the points we have to include in Emlen’s medical 504 plan for school.
And of course, Jenny Lawson (@thebloggess) continues to amuse me. (She has nothing to do with CF. There has to be some non-CF-stuff that I look at, right – like the Dali Lama and Mindfulness Wellness?) Jenny has this schtick where she tweets “The most baffling thing Amazon recommended today”. At first, I was not sure if this was actually her or if she had been paid to pimp out Amazon. But after she went on for days about Amazon’s recommendation for cat wigs and then tweeted photos of her own cats wearing the wigs, I would like to believe that it really is her.
Once, she tweeted that Amazon had recommended a book called The Haunted Vagina while she was searching for reading material for her daughter. Seriously. I looked it up. That is its title. The book jacket features a half-naked woman front and center with a haunted house and old weathered tree darkening the background. Jenny tweeted photos of her reading the book and packing for a trip with the book. Also, she hosted an online reading group for the book. I would too if Amazon had recommended it for me, which it wouldn’t because I have boys. But, on second thought, a haunted vagina might be scary for any teenager.****
(Hmmm…Maybe I should hand those out on Halloween night…? Yes, that is it. I have been wracking by brain on what to dispense to the trick-or-treaters this year. I like to give something with the candy. Two years ago, I managed to unload all the plastic wrapped tooth brushes that Christian had collected from his years of bi-monthly business-class flights to Europe. We had two drawers full of them – in other words, tons. Last year I handed out the massive pile of dentist-provided toothpaste samples, the little Colgate and Crest tubes that are not enough toothpaste to take with you when traveling, but you feel guilty if you throw them out. However, this year I am out of dental hygiene supplies. A few witches, aliens or New England Patriot Gronks could receive a copy of The Haunted Vagina as a treat, maybe? I wonder if Jenny’s tweets made the price point go up?)
I will confess that I have also used Amazon for book recommendations. They are usually more “spot on,” as my British tweeting friends would say, than the local public library. When I manage to have a trip to the library on my radar, which I usually do not, and there happens to be a parking spot, which there usually is not, most of the books I collect bomb. Emlen hates them. He is a notoriously picky reader, only enjoying books that fall into The Dairy of a Wimpy Kid or Captain Underpants genre. “Comedy only. No girl drama. Nothing scary. And please stay away from mysteries,” he insists. So, it is not really my fault or that of the library’s.
(I just remembered, I have to renew the last round I borrowed. They are due today. Emlen is still slogging through them.)
The most success I have had in finding books for Henry and Emlen were based on suggestions that came from the elementary school librarian. Mrs. Pettyjohn retired last year, but in the eight years I volunteered in the school library, she always knew exactly what would hold my children’s attention.
I liked my library volunteering days. Once a month I would schlep into the school to sit at the desk, man the computer and check books in and out. Henry and Emlen are no longer in elementary school, but while they were it was the perfect volunteer job for me for two reasons. First, it is quiet in the library, not like the chaotic art room or the classroom on math project day with the thousands of tiles, numbers, equations and noisy children scattered about. Library duty is quiet because the kids are not allowed to talk, at least not that much. They are not really even supposed to talk to me, except when I am checking out their books. The second reason for enjoying this job, is that, in between checking in the returned books and checking out the new books, I shelved books. There is a strict order to their location and I love it. Ficton is alphabetized on the left side of the library. Non-fiction is organized by the Dewey-Decimal system on the right. The biographies are alphabetized over by the computers. The fairy and mythical books, the easy readers and the series books are scattered elsewhere, but it never waivers. Every book has its place. Perfect.
Sometimes I would arrive at the library early to get ahead of the shelving part of the job. Mrs. Pettyjohn and I would catch up on what was going on in our lives and I would ask her for book recommendations. She would usually have some ready to go for Henry and Emlen; World War II novels for Henry and, as I mentioned earlier, the more creative, funny ones for Emlen. Most of her suggestions were a success and led me to other books by the same authors – just like Amazon, but Mrs. Pettyjohn is not a giant complex algorithm on the internet. She is a person. She would not recommend The Haunted Vagina.
Even when Henry graduated from the elementary school, she still helped find good reading material. As he got older, he lost interest in reading. He couldn’t stand the dystopian novels and vampire dramas that his peers were so gaga over. At one point he had all but stopped reading books, focusing only on automotive magazines and The New Yorker cartoons. Also, I suppose the introduction of Instagram and Snap Chat into his life via his new iPhone contributed to the reading pause. We argued about it. I instated the “read a book for one hour a day” rule before any screen time. And I promised him that I would talk to Mrs. Pettyjohn, “to get something decent.”
However, I was unable to pick her brain that month. I got distracted. When my library rotation came up, I went in early, but rather than chatting and shelving books, Mrs. Pettyjohn was waiting with a book for me. Ghosts by, Raina Telgemeier, had been graciously gifted to the library. The author is very popular and has been on the New York Times Best Selling list. Her newest one, the one Mrs. Pettyjohn was handing to me, is about two sisters. The younger one has cystic fibrosis (CF). Mrs. Pettyjohn wanted to know whether I thought it would be appropriate for circulation in an elementary school that had a CF student, regardless of the author’s status.
“Why not?” I thought. I was naïve.
I thanked her for including me in the decision. She responded that she thought I was the only person who could actually make the decision. I spent the next hour, ignoring the piles of books that needed to be checked in and shelved, quickly reading the very colorful cartoonish and super-friendly drawings of the graphic novel.
Basically, in summary (this is not a book review, because if I was not so personally involved with the subject matter the story might be very good), after being moved to a salty sea aired town on the coast of Northern California, Catrina and her younger sister, Maya, who has CF, must come to terms with the lifespan-limiting aspect of the disease. Maya is about eight years old (I do not have a copy of the book, so this is all from memory and might not be accurate) and extremely sick. She drags her oxygen tank with her everywhere she goes. There are drawings of her in bed with her nebulizer medicines surrounded by racks of medical equipment. It is pretty dramatic. But Maya has a good outlook on life and it is hard to temper her natural curiosity. She insists on exploring the rumors that their new town is haunted. She desperately wants to see a ghost. As Maya’s conditions worsens, the author uses the town’s annual Day of the Dead celebration to access the ghosts of town’s past residents. The sisters discover the world beyond and come to the realization that one should not be scared of death. Dying is not the end, but merely a phase of life.
At least that is what I remember. I might be confusing it with some aspects of the movie Coco. (Again, I do not have a copy of the book.) Also, I am unsure if Maya dies at the end because at that point the students were coming around to check out their books. And I was a tad horrified that a book with such a dire picture of CF had been written, and that it might be readily accessible to Emlen.
After the children left, Mrs. Pettyjohn asked whether I would feel comfortable having the book added to the school’s collection. Trying to be polite, I told her I thought the book was misleading. I did not know of any elementary school student with CF that is that sick. (OK. I do not know anyone else with CF, so it is a little hard to say, but in all of my twittering, I have not run across a CF child who is as ill as Maya. In and out of the hospitals, yes, but not dying. CF is a progressive disease. The adults are the ones that are really sick – with oxygen tanks and 21% lung function.) I told her I did not want Emlen to read the book. He did not need to know this could be his fate. I also thought his friends should steer clear. First, because they might look at Emlen differently if they knew and second, because I did not want anyone who might be mean spirited bringing it up over and over again.
So, that is me, wanting a book to be censored from a public elementary school library. All I could see in my head were book burnings with ashes of Catcher in the Rye floating in the air. I felt badly because public schools are always strapped for cash and gifted books are a blessing. Fortunately, Mrs. Pettyjohn agreed. She didn’t think the subject matter was presented in a positive way, even though the author had said the book had been thoroughly researched. (Research materials found where? The 1950’s when a child born with CF would not make it past 8 years of age? Apologies if that is snarky.) Mrs. Pettyjohn said she would tell the gift giver that they were going to put the book in the back room to be saved for a more appropriate time.
I mentioned this whole book-censoring drama to my friend, the one who had taken Emlen away for the long weekend. She remarked that she had just purchased it. I think I went pale, because she immediately said she would look at it before placing it in the “to read” pile. She read it and decided to shelve the book for a later date as well.
Emlen’s official Middle School 504 Review meeting is next week. We are going to meet with all of his teachers to see how the 504 that we wrote this summer is holding up: ready access to bathrooms, staying away from sick kids, being excused from homework if he is too tired, etc. I wonder if I should explore having Ghosts pulled from the middle school library? Or is it too late? Do any of Emlen’s classmates know what it means to have CF? I would guess not. Kids tend towards simple truths. And, in Emlen’s case, he is young and looks healthy, ergo there is nothing wrong with him, other than having to swallow six pills right before he eats – oh and turning really red when he gets hot. His friends do think that is weird.
That is what I see on Twitter, the twittering machine, the birds chirping perched on a rusty hand crank. In my Twitter feed, the little kids with CF are running around participating in sports, going to their doctor appointments and attending clinic visits. Their parents work tirelessly keeping them healthy and raising awareness.
The teen CF crowd is a little light on tweeting. I suspect that is because as teen you do not want your disease to define you or, in the worst-case scenario, you just do not want to deal with the disease at all. There are a few CF teens present, like Morgan Coxhead (@PastiesForPooches) who wants to be a professional footballer and fourteen-year-old Benat Broderick (@BenatFightsCF) who chronicles his life while championing for EVERYONE with CF. (I am not sure he sleeps).
The twenty to thirty something CF’ers are most active, information turns out so fast in this age group that it is hard to keep up. They are all about social media: Blogs, Vlogs, YouTube, Instagram. They use all the outlets so efficiently while discovering themselves as full people, contributing to society and balancing their health care requirements. A lot of them make it their full-time jobs or at least their second full time job to raise awareness. Brad Dell (@BradDell_) is a gifted writer and columnist, writing about his personal experience with the disease. @NormalLife7, Kate Eveling (@thevfto) and @FreyLife produce daily/weekly vlogs. Gunnar Esiason (@G17Esiason), tweets, blogs, has a podcast and gives lectures about CF all over the country. He is busy. And of course, I would be remiss if I did not mention the current super hero of the CF world, Josh Lewellyn Jones (@JoshLJ24), who just lifted one million kilos in twenty-four hours. He broke the world record to raise money and awareness. He even has his own hashtag, #MillionKiloMan.
Every once in a while, a very active CF Tweeter goes quiet. I like to think that they are on vacation or taking a break. I need breaks from Twitter too. I get it if that is the case, but I also know that it might be because they not doing well. It is tough to accept.
However, with every medical breakthrough, the life expectancy of CF increases. At the North American Cystic Fibrosis Conference this fall, the Cystic Fibrosis Foundation announced that it hopes, given all the positive data from the clinical trials of the new triple combination drug therapies, that 90% of all CF’ers will be doing well by this time next year. Longevity for CF is becoming more and more realistic. I am glad that Emlen will have a good chance to explore his future, whatever it is that he decides to do. (I still vote for mechanical engineer, lawyer or project manager). So, maybe, censoring the truth for a little longer is OK...
*The Longevity Series, Part One: Redacted” is in the Archives, May 2018, in case you are behind. I am. I had planned to complete all three pieces by now. But life gets in the way and other things come up.
**(Photo of work from, Naubert - Riser, Constance, Klee, The Master Works (London: Bracken Books 1988) p.70
***I finally answered @SusanPerri. I have not heard back yet. I do not expect too. I enjoy seeing what she tweets every day. She is working so hard trying to save healthcare. I am just going to say it once, for Susan, please vote.
****Henry will be home on Halloween night, recovering from his NOT-CF sinus surgery. I asked him if he would like to help me hand out The Haunted Vagina to the older trick or treaters. He looked at me like I was certifiable. Enough said.
Emlen is doing well - at least physically. The sinus surgery was a success. Thank you for asking. We got back from the hospital mid-week. It was a much shorter stay than expected. The next morning, after sleeping for twelve hours, Emlen announced that he could feel air moving on the back of his throat when he used his nose to breathe. I had to think about that, because the sensation is pretty normal for those of us with open sinus cavities.
On the other hand, there have been some psychological ramifications from having surgery scheduled two weeks into the first year of middle school. Calling it anxiety would be putting it mildly. It has been drama. Emlen’s nervous tummy is back. He refuses to eat. That spirals into not having any energy to deal with, well, EVERYTHING. This morning, with a big sigh, as he stared at his whoopie pie breakfast (at this point I am not even asking him to eat something “healthy”) he wondered what was going on with his body. I know what is going on. He was pretty much tortured for three days and now has to get used to school all over again. Yesterday, it was all about the lunch tables and who was eating where.
I suppose it will get better, a little bit every day.
Thank you for the hospital visit care package. Emlen tells EVERYONE about his emergency underwear. I am trying to get him to put them in his backpack to be carried with him at all times. I think it would be funny; reminiscent of when the children carried zip lock bags of extra clothes everywhere. But he declines with a huge eyeroll. Apparently, we have come to that age where I am beginning to embarrass him – all the time. I asked him this point blank yesterday, if we were finally at that age. He rolled his eyes while nodding, which is quite hard to do. You should try it. I did. That embarrassed him too.
And thank you for my socks. I LOVE them, pink and blue "Bitches get Stuff Done" socks. Perfect. Henry was a little worried that I would wear them in public. He announced that I could wear them the same way I wear my Nordstrom NBA branded Golden State Warriors Stephen Curry socks, with long pants and tucked well into my over-the-knee-high boots. Then he realized that the lettering was on the toes and no one would see it. I am wearing them today.
Today is a get stuff done day.
And my feet are cold.
I think I have recovered from the whole moving into the hospital thing. It has taken a while. Mostly, because even though you are finally home, and it is nice to be home, there is still tons of medical follow up to do. The ENT who performed the surgery pulled tons of "infected Emler’s glue-like puss" (his words) out of Emlen’s nose. The cultures grew staph* and steno* which totally makes sense as these were the two bugs Emlen has been dealing with for the last year. Now he is on a pretty high dose of two oral antibiotics (Yay! No IV antibiotics!) to try to take out any of the bacteria left in his nose or that happened to be knocked loose during the surgery and is now trying take up residence in his lungs.
(Maybe that is why his stomach is upset all the time? No. He was fine last week while he was home, recovering and not at school.**)
Then of course there were piles of undone laundry, bill paying, grocery shopping, and emails to tackle. Here is my status: the laundry is back on track, the bills are paid, the pantry is stocked (we do not really have a pantry, but it is a nice way to sum up hours of food shopping, organizing, preparing and cooking. One little phrase.)
Oh, and, Henry is complaining that he does not have quite enough football to watch on Sundays. Hulu is not cutting it. He misses NFL RedZone. We will have to explore more non-Comcast options for him. Add that to the list.
I am almost caught up on emails. The big one that caught me off guard was the middle school band teachers inviting Emlen to join the Wind Ensemble. I thought it was odd, because Emlen plays the drums. But after a bit of back and forth I figured out that “Wind Ensemble” is just a fancy name for “Advanced Concert Band”. After some thinking and asking a bunch of questions, (Are there other 6th graders in the band? What is Masquerade Night? Do I need to wear a costume? Do we take a big coach bus to NYC in April?) Emlen decided to do it. I just spent the last hour signing Emlen and Christian up for the NYC trip. It is three days of concert band, orchestral and jazz music, nice restaurants and Broadway theater. Christian is going to tag along to help train the middle school nurse in all things cystic fibrosis (CF). Hopefully this will allow Emlen, in a couple of years, to head off to Washington DC on the eighth-grade class trip without his parents tagging along. Christian will also be in charge of eight other kids. Chaperoning! Fun? (At least it will be for me. I will be at home being silent. Maybe Henry and I can go to Nordstrom and buy more socks. They should be on sale by then, because it will be spring time and NBA season will be over.)
On top of all the household chores (I swear some days I am just a maid) I had to jump right back into getting Henry to all of his medical appointments. I think I mentioned them last time. Braces off. Retainer molded and fitted. Yearly well check and flu shot done. We saw the ENT too. I would love to have wrapped that up with a simple long course of antibiotics, but it seems that there is going to be some more follow up. After some poking and prodding the ENT concluded that Henry’s sinuses are perpetually inflamed as evidenced by a developing polyp. (What is it with this family?) That is going to lead CT scans, more appointments and possibly surgery. Please cross your fingers and hope that it is a mere outpatient procedure. It will probably take forever to coordinate.
In the mean time I have tasks looming, future tasks, not catch up tasks. Swim team starts in a week. It will be good to get Emlen back in the pool. He is always calmer after swimming. Our first meet is in a month and it is time to get the Thoreau Sharks Ribbon Committee back together. Ribbons need to be cut. Hundreds of firsts, seconds and thirds place ribbons are waiting, still wrapped on their spools. And, we need to order a gazillion participation ribbons. I think we only have a few remaining from the summer. Then those will need to be cut. I do not mind. I still love my pinking shears, and it gives me an excuse to watch TV. But you already knew that. I just finished the whole West Wing series, so if you have any suggestions for something new that would great – on Netflix, since we might dump Hulu because of Henry’s whole not enough Sunday football concern.
And art projects have entered my head. Sketches of string wrapped antlers, copper wire, mica, CF med vials, burlap, mushrooms, like the fish from ages ago, are scattered through the house on sticky notes. It has been a long time since the studio has been calling to me. I am not sure why now. I have a lot going on. Perhaps because I all but retired from the interior design career. I have only one California client left. As I said to him last month, while we were finding a garage door for his house on the hill, “for him and only him.” But whatever this art thing is, it is worthy of getting a sketch book and exploring. At least it will be a place to store the sticky notes.
Ack. I just got off the phone with Henry’s ENT. According to the CT results, his sinus cavities are worse than Emlen’s. They are recommending the same surgery that Emlen had. On top of that they want to do some genetic testing to confirm that Henry does not have CF. Great. I am almost one hundred percent positive that he does not. He has none of the symptoms other than a polyp and sinus inflammation. But can you imagine? However, it is likely that he is a carrier of a CF gene. Which one would be the question; my gene, which partially works, or Christian’s gene, which does not work at all? There are theories floating around the CF medical community that if you are a carrier of a CF gene you may be more prone to CF-like symptoms such as exercise and/or viral induced asthma, sinus disease, GI issues, and excessive sweating while not actually having the disease. (I believe them. I think that answers my question: What is it with this family? It is the CF gene.) However, as our pulmonologist says, it will take time for the rest of the medical community to catch on. Maybe they can follow Henry and see how his health progresses? Maybe even for free. He can be a very tall science experiment.
Say hi to Miranda, Iris and Tim,
PS. While editing, I read an article about a man who was diagnosed with CF in his thirties. He and his wife were having trouble conceiving. It turned out he was infertile, as so many male CF’ers are. It was not the infertile part that caught my attention. We already knew about that. It was the late diagnosis part. How could his doctors miss that? A mild case maybe? Did he have any symptoms like sinus issues and polyps? Who knows. The article did not go there. But, given what is going on with the Henry’s nose, the ENT and genetic testing, I think I am going to go back to bed. Please wake me when it is over.
*I shortened “staph” and “steno” because I can never remember the names of the bacteria we are dealing with. You would think I would be able to after seven years of this. Denial? Oh yes…
**We finished the courses of antibiotics two days ago. Emlen still had an upset stomach this morning. It is not the meds. Just nerves.
I found your Patagucci rain jacket. It had been integrated into our garage coat storage system. If you had not said anything I would not have noticed it until the snow flew and winter jackets were required.
The kids are back in school. Christian is even going into the office. The house is quiet. I find strength in the silence and have been using my time to fight the entropy of the summer. September is going to be pretty brutal. I need everything to be in order. I am close, or at least in a state of organized delay - that means lots of neatly stacked piles, everywhere. Comfort in that.
Do you have air conditioning in your school? Probably not since you said you were sweating in your classroom. I am sweating while I type in the basement. I thought basements were supposed to be cool. Ours is not. My armpits will be stinky by the end of the day even with my men’s 48-hour deodorant with supreme odor control. The heat is worse today than a couple of weeks ago when we drove up to visit.
Which, by the way, we had the best time. Truly. We always do. (This is my belated thank you email.) Lunch was so yummy – that ham —Wow! It is rare that Christian goes on and on about something in the States being just like Italy. And we loved being tourists for the afternoon, popping in and out of shops, window browsing, people watching. Henry and Emlen had so much fun running ahead with Miranda and Iris. It is great how they get along. I guess they have kind of grown up together. Familiarity. My favorite image of the day was, after we finished dinner and the grown-ups were still at the table grown-upping, the four of them squeezing onto the living room sofa with their new school-ready phones, texting and air dropping images to each other. The giggling was priceless.
Also, we loved the Holy Donut. Thanks for bringing us there. Our timing was perfect, only a short wait. I can’t believe how long the line was later in the day. Henry still talks about it - the donuts, not the lines. Buying a bunch of different flavors to have for dessert that night was the way to go, especially since my keto brownies were a little on the “acquired taste” side of eating. I tried another brownie recipe yesterday. The texture is better, but it still tastes like I used only 90% chocolate. They suck all the saliva from your mouth, leaving it very dry. I think they would be good with a big red zinfandel or cab, not so much the grapefruit flavored seltzer that I guzzle.
But at the moment I am typing. I am not drinking wine. And I am sweating.
Yes, I am still sweating. Maybe I could use the brownies to soak up the arm pit sweat. Or I can experiment with how to type with my arms out like wings, so I can air out. Here goes, arms out. It turns out it is difficult.
This is Mexico in July hot.
Oh, wait. I forgot. I have a fan in my office. Just a minute. So much better.
I spent the last week of the summer getting the kids ready for the fall. With both of them starting new schools this year there were a few more than the usual number of hoops to jump through. Once Henry figured out how to access his Gmail account he was pretty much on his own. He seems to think e-mail is an antiquated form of communication; he never bothered with it in middle school. Anyway, he just needed to talk about some stuff, mostly the logistics of high school.
Emlen’s start, because of the cystic fibrosis (CF), required several meetings for his 504 Plan, presenting “CF and What It Is” to the 6th grade staff and filling out pages medical forms for the school nurse; and, because he is starting middle school, needed constant mock run throughs of locker combinations, schedules, school maps and changing buses. I think we got it all. Honestly it was a little painful. For several nights leading up to the big day I was not sure he was actually going to make it. His anxiety kicked in, set on high. It was an hour or two of hashing out EVERYTHING that could go wrong. Thoughts of home schooling rattled around in my brain. (Oh God, can you imagine?) But, he managed. He left for school the first day with a smile on his face and only slightly nervous.
(The second day he threw up in the morning due to the anxiety, and, perhaps the heat. It is too hot for someone with CF. Regardless the reason, he announced that he will never eat waffles again. Sigh. They were so easy. Just make a whole batch on the weekend, freeze them, and then toast them in the scuffle of the morning routine. Now what? I think I will buy some cereal.)
Today, and probably for the next week, I am dealing with the fall family calendar: organizing the fall house projects, finding time to catch up with friends and scheduling the after-school activities. I think once we get through September things will settle down. There are so many conflicts right now, especially with the after-school activities: pre-season swim, pep band, school dances, cross country vs ultimate frisbee, music lessons… I suppose it will all work out, and if not, there will be lots of changing clothes in the car while putting together a saxophone, madly driving from one side of town to the other.
And then there are ALL of the doctor appointments we have in September – for both boys. Henry has a lot this month: the orthodontist to FINALLY get his braces off, the ENT to complain about his enlarged adenoids and constant sinus issues, his fifteen-year-old well check, a dentist appointment and another ortho appointment to get his retainer. I think that is it.
Emlen really only has one doctor appointment this month, but it is a big one; sinus surgery on September 17th.
The surgery is supposed to be pretty straight forward. I am going to say that now, but I have heard rumors that having all your sinus cavities roto-rooter-ed is awful. I will let you know. Fortunately, because Emlen has CF, he and I will remain on the 9th floor of Children’s Hospital for five days where he will endure another round prophylactic IV antibiotics. From what I understand, when you have the colonies of fungus and bacteria scraped out of your sinus cavities, there is a high chance of something falling into your lungs. Getting ahead of that is just good medicine.
(Funny, that I say “fortunately” when talking about staying in hospital. I guess, because after his surgery it is going to be easier to have a round the clock staff helping him heal rather than Christian and me tending to his every need).
What I do not know at this point is whether the IV’s will continue for another two weeks at home, as they did this past spring. That will depend on the whatever fungi and bugs they pull out of his nose.
By the way, the fan is not helping. All it does is blow hot air around the room. I think I am going to have to run the dehumidifier and crank the air conditioner for the next few days. That is me, not being a very good New Englander. But then I can eat the brownies and not use them as sponges. I would rather do that.
I hope that start of the school year is going well for you.
I just looked at the weather report. Cool weekend ahead.
Say hi to Miranda, Iris and Tim.
PS. Henry, so far, loves high school.
PSS. Emlen likes middle school too. He thinks he is going to sign up for Ultimate Frisbee. I wonder what days that meets? Probably on the day of his drum lesson. Now I foresee frisbees and drum sticks flying around the car with the clothes and saxophone parts.
The labels were wrong, a complete mess. I spent a good portion of the weekend peeling very sticky labels off of the back of swim team ribbons. My fingers were covered with label goo for ages.
Normally, taking care of the swim team’s ribbons is a simple process. For a few days after a meet, the results are reviewed by the coaches via email. Once approved, the labels, for the backside of ribbons (there are a lot, one for each swimmer for each event they swim) are printed. I pick them up at the club. Then Christian, Karen and I (A.K.A. The Thoreau Sharks Ribbon Committee) power through the piles. We divide and conquer. We each have our own way.
Christian works in our kitchen labeling squarely and organizing ribbons into very neat piles. He works fast, only to slow down occasionally for perfectionism. I have seen him peel and re-stick a label just to make sure all the lines are parallel. Then, he deftly drops them into files that fill the team’s ribbon box, each marked with a swim family’s name.
Karen works at her house while binge watching TV. I think she enjoyed The Crown this summer. She, like Christian – they bond over this – prefers straight labels. And, I am almost one hundred percent positive that she manages to keep all of them in alphabetical order. “Alpha order,” she calls it. When finished, her completed piles are bundled into one, held together with a perfectly proportioned rubber band. It amazes me that hundreds of ribbons can look like almost nothing when stacked and bound.
I binge watch TV too, but my shows require very little brain power. I call it “Mom TV”. My labels are not straight, because in order to see the TV from my position on the floor I have to raise my head. Also, neat piles are absent from my system. The ribbons surround me. They litter the floor. Even though I work steadily, it can be a slow process as I am often distracted by the TV. When the drama, from whatever show is on (ER, any Marvel series, Jane the Virgin, Grace and Frankie, Shameless, rom com movies, The Goldbergs, BBC mysteries – although I have to pay attention to those, The West Wing– actually, I have to really pay attention to this one, New Girl, and the list goes on…), has settled down and I can focus, I return to the ribbons. I stick a first-place label to a blue ribbon, a second place to a red, third to yellow, and the rest to the participation ribbons. Participation ribbons run the gamut, each club varying style-wise. Some are plain, some red, white and blue, and some are rainbow. I like the rainbow ones the best. The little kids do too. How can you go wrong with rainbow ribbon? If you are not placing in the top three slots of your events you still have something to look forward to. (Maybe, when we run out of our team’s current supply we can get rainbow ones.)
The Burlington Swim and Tennis Club has red, white and blue participant ribbons. I commented to their coach about this. I was hanging around after the swim meet. Rather than the usual two to three-day review of results, I was having the labels printed right then and there. I would leave Burlington with the ribbons in hand. So efficient. I remember thinking I could have them ready for distribution at the next practice.
However, early the next morning, as I neared the end of the filing, I noticed that Henry’s ribbons, which were last ones left on the floor, looked odd. (I do not bother filing Henry and Emlen’s ribbons when I am finished labeling. I just carry them up to their rooms after I clean up my huge mess.) I was pretty sure Henry had placed first in all his events, but there were only red ribbons left.
I happened to have video from the Burlington meet. The new stroke and turn judge I have been training had finally been ready and willing to fly solo. (When you are busy disqualifying children it is hard to video your own kids’ event.) I looked. He was first. “Oh god. If Henry’s results were wrong, how many others were?” I thought. I pulled all the ribbons from the files.
After much back and forth with the coaches we decided that the mistakes – there were many – should be corrected. Resigned to my fate, I set about to peel the labels off the ribbons. “More Mom TV for me.” I declared. It took about three hours, including the Goo Gone cleaning time for my fingers.
This fiasco has been pretty much the way of the summer. We start off on an endeavor with certain expectations and then have to re-set. Vacations have been either too fast and exhausting or have imploded. Our landscape project is on hold while we sort out lot lines with our neighbor. (For the record, I am on board with the delay. Lot lines are lot lines. We should know where they are before we dig up all the grass between our houses.) And, Henry has turned into a grumpy teenager complete with a major bio-rhythm shift and the need to sleep all the time. (I suppose a six-feet-two fourteen-year-old does need a lot of sleep. He has been complaining that the backs of his knees hurt, which I can only assume are growing pains. I should cut him some slack.)
Finally, the big one: Emlen’s health. It has been a lot of work, and just as I think we are headed in the right direction – SLAM – right back to zero, to wait for a new strategy.
Last month we were in the beginning stages of taking an antifungal medication to clean up his aspergillus filled lungs. His CF team settled on Voriconazole. “Vori” as they call it. It is a pretty nasty med that requires titrating the dose to make sure it does not reach toxic levels while still remaining strong enough to be effective. Persnickety work. Emlen was annoyed by the prospect of weekly blood draws required to track it.
However, we only got about four weeks in.
A few days after one of the last draws, Emlen’s pulmonologist called and requested that we up the dose, again. “It is still not showing up in his blood work.” she said, “CFer’s metabolize medicines differently so I feel comfortable with this. I do not think we will go from zero to toxic in a week.”
I mentioned that I had noticed that Emlen was more sensitive to the sun.
“Sunscreen.” she said.
“We were already doing that.” I said.
A few days after Emlen started the higher dose, he announced that his lips were dry and cracked. I gave him some lip balm and sent him to early morning swim team practice. Later that night Emlen’s lips has turned into an oozing, blistering, second degree sunburn mess. He had been outside for a mere two hours. We had been diligent with the sunscreen, but I guess we missed the lips. Who puts sunscreen on their lips?
While he complained about how much it hurt I started Googling the side effects of Vori. (I should follow my own advice and not do that. Gross.) I saw some pretty nasty images of rashes and sunburns. They looked like Emlen’s lips.
I called the hospital.
When Emlen saw his pulmonologist the next day, the blistering had slowed. (I had stopped the meds and bathed him in Aquaphor.) But she was still horrified. She studied Emlen up and down and in and out. Literally. She stuck that little flashlight everywhere. Then she turned to me, talking. She talks really fast with lots of thought, all the information flowing freely. Then she goes off on tangents, eventually circling around to the main point all within seconds. (I think I have mentioned this.) Sometimes I have a hard time keeping up with her; but I had seen what she was worried about in my frantic night time Googling. Steve Johnson Syndrome is bad. Fortunately, Emlen was not showing signs of it.
However, she still had some pretty strict orders for Emlen. “No UV rays for five days. You cannot even sit near a window until your lips heal. Then you will have to get one of those geeky L.L. Bean sun shirts, wear a hat and slather yourself with sunblock – not sunscreen, sun block, the solid stuff – for the rest of the summer. I think it is called zinc oxide or something,” she barked.
Emlen was excited about the prospect of solid video game time for five days, but he was not excited about the geeky L.L. Bean shirt or the sun block. “On my lips?” he questioned with a huge eye/body roll that only an eleven-year-old can do so well.
“Yes.” she answered.
I foresaw problems. “Emlen, it is going to be great. I will order the colored zinc that the Australian life guards wear. You can decorate your face every time you go outside. We will all do it.” I enthusiastically offered not believing that I would actually have to put on ridiculously bright lipstick. (I prefer to fly under the radar, to not be noticed. But if I have to, for the health of my child, I will set a good example, like eating fish even though I do not like fish. Never mind. We do not eat fish. I do not like the smell. However, I will still wear the sunblock.) I suggested that we use blue for our lips. (Blue is the color of the swim team.) As I searched Amazon for tubes of zinc oxide, I mentally coordinated an outfit that was gothic enough to go with blue lips yet preppy enough for my turn as stroke and turn judge. Our next swim meet was against the local country club. Preppy was important.
Emlen’s skin healed pretty quickly. He resigned himself to wearing a sun shirt and he liked the hat I dug out of the garden shed. He received some great compliments from super sporty strangers. That made him happy.
However, as the swim meet approached, I was still having trouble with Emlen and the whole Goth lip look. He was refusing to go to the swim meet if he had to put zinc on his lips. “My friends are all going to laugh me,” he insisted.
However, they didn’t laugh. Instead, they saw the brightly colored tubes of zinc oxide and immediately smeared it all over their faces. They painted their bodies and applied dots to their shoulders, bellies and backs. They even smeared the blue zinc on their lips. Emlen’s friends made it fun and swim team trendy. “Blue lips, to support Emlen!” Emma, Connor and Ella chanted when a teammate passed by. For the rest of the season’s swim meets Emlen’s friends would don blue lips. It was their war paint. Even the coaches and parents joined in.
I was filled with emotion when I headed to the pool deck to be the stroke and turn judge. It was a little difficult to watch, judge and disqualify children that night. They had shown such amazing support. “Such a great team.” I thought.
The summer swim team season ended this past weekend. It is always a whirlwind with six weeks of morning and evening swim practice and weekly meets. Everyone works so hard - swimmers, parents - that when the adrenaline ramp up to championships vanishes and people scatter for the rest of the summer on their various trips and vacations there is usually a big letdown.
However, this year, in the aftermath, there is still lots of little stuff to do. Christian, Karen and I still have to sort and file a summer’s worth of ribbons; and we have to deal with the Burlington mess. No one was able to fix the results. We have a few hours ahead of us of hand writing labels. It will make the kids happy. They have been asking for those ribbons. I think it is going to require some concentration. Writing legibly always does. No Mom TV for me; and I may have to sit at a desk.
I am actually Ok with this, the dragging out of the season a little bit before we take off on a long weekend to catch up with grandparents, uncles, aunts and cousins on the west coast. I have some stuff to work out; thoughts racing around in my head that need to be sorted and filed, like the ribbons. The Buddhists call it "Monkey Mind." Mine is rampaging. It needs to be quieted.
For the first time, since Emlen has been swimming, he was not placed on a relay for the final meet. I get it logically. It made sense. Relays are complicated. The various combinations of swimmer’s times and age group requirements all have to be factored in. You want to put the best relay together to score the most points. This is important at champs. Especially this past season. The Thoreau Sharks had a really good chance to win – the whole thing, to be the Minuteman Swim League Champions. It had never been done before.
Emlen moved up an age group this season and is swimming longer distances. He had rocked the 10&Under’s in the 25YD events but has been having a bit of trouble with the 11&12’s 50YD events. This is pretty typical for most kids who move up. It takes a while to learn how to be efficient in the water when you double your distance. I am not saying he did badly, because he did not. In spite of all the CF symptoms he deals with he placed in every event he swam. He even placed at Championships, scoring points for the team. Just not first place, which is what he is used to. Again, logically, I get this. He was swimming against some extraordinarily experienced, healthy 12-year-olds. These were the kids that were put on the relays.
But, nagging, in the back of my mind, I see it as a sign of his disease. Cystic fibrosis is progressive. And although Emlen has been unbelievably healthy for the last six years, he has hit a hiccup. It has been tough. Round after round of oral antibiotics, a hospitalization for a clean-out with IV antibiotics, anti-fungal medicine which he will resume in the fall when there are less UV rays, surgery this autumn to eradicate the bacteria and fungus that may have colonized his sinus cavities along with more IV antibiotics, and as of this morning, a month of oral antibiotics because of a new bacteria growing in his lungs, all of which, has resulted in an ever so slow decrease of his lung function, even with the doubling down of all his daily therapies and enzymatic medicines.
So, I wonder how his disease will progress and how it will affect him, mentally and physically? Will Emlen notice that he is being left behind the healthier kids, that he is not growing as much, that he has less energy, and that sometimes it is harder for him to concentrate and learn? What can Christian and I do as parents to prepare him for this, to make him feel like a whole person, successful and confident? It is a lot to work out.
The night before championships Emlen said he wished he was on a relay.
I wish he was too.
A quick thank you to everyone who helped and supported Emlen and lent a hand to our family over the last couple of weeks. It is truly a gift to have so many great friends.
To Max and Rebecca for visiting in the hospital that first day. And then following up with all those face time calls for company while we were housebound.
To Henry and Christian for visiting later that day, bringing our favorite Dino’s dinner and hanging out on Saturday night.
To Baba for sending the “perfect” backpack that Emlen truly believes will solve all of his organizational “problems.” And for the great remote-control car. It is fun at home too.
To Grandy and Grammy for the super surprise visit on Monday on your way to the airport from your weekend in New Hampshire.
To Owen and Meg for squeezing a visit in between school and Arts Night at Thoreau. I know the schedule was pretty tight. And for the presents of Fart Putty, the Star Wars Paper Airplane book, and the game of Blokus. All of them entertained us over the following days.
To Gracie for stopping by on Tuesday morning on your way to classes with the digital fishing rod and reel – a perfect present.
To Sam for the video game playdate on Wednesday afternoon after Emlen was home and settled. Always great to hang out with you.
To Emmy and her family for dropping off all of the homemade get-well cards and giant poster from Emlen’s classmates. (We hung the poster on Emlen’s bulletin board in his room.)
To all of Emlen’s classmates and teachers for taking the time out of the school day to make all the get-well cards and posters. That was a lot of work.
To Noah, Simon and Amy for joining us at Helen’s for an early dinner after a long day of follow up appointments in the city. And for the cards, poker chips, more fart putty (I am not sure that is what it is, but that is what we use it for) and for the plastic army men. Emlen loves them!
To Elliot for hanging out with Emlen while I took Henry to the pool to work on his breaststroke. And for the Cabela’s gift card. Emlen can’t wait to go to the store and spend it.
To Herrick for stopping by and playing more video games with Emlen before a Wednesday swim practice. (Emlen informed me that he logged more than nine Xbox hours that week.)
To Rika for making Emlen his favorite chocolate cupcakes with chocolate buttercream frosting. They helped to put most of the weight back on that he lost while in the hospital. Yum!
To the Stevenson and Tavakol families for driving Henry to and from all his activities and feeding him while we were otherwise occupied – the feeding part especially.
Also, to Uncle Doug, Larry, Paul, Julie, Brian and Phil who raised money and rode with the LifeLineRacing Team in the annual Cystic Fibrosis Foundation’s Cycle for Life on Saturday June 16th in Half Moon Bay.
To Uncle Chris, who is raising money and awareness for cystic fibrosis by riding in the Massachusetts CF Cycle for Life 2018.
And finally, to everyone who shares and likes this blog on Facebook, Twitter and all other social media platforms (especially the shares. You know who you are. You are awesome). It really helps us raise awareness for CF.
We appreciate all of it.
Here’s to a fantastic summer.