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.