Blue Lips

​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. 

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