Letter to Susannah

​Hi,
 
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.
xo
Elizabeth

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*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