Playing the Part

A few months ago I did the 23 and Me ancestry/DNA test; six to eight weeks later, the results confirmed that I am Irish enough to be superstitious. Hence why I haven’t written in quite some time. I don’t want to jinx myself.

I am very careful about the thoughts I put out into the Universe because I’ve learned from experience that words have a powerful way of manifesting into reality. And my Fairy Godmother has a very strange sense of humor. While I have yet to find just the right sentiment to conjure a lottery win, I know the power of what you think, feel, and speak.

So for months I have remained essentially mute on digital paper and somewhat recalcitrant in person talking about the newest leg of my journey for fear of disrupting the delicate and finicky nature of Karma, Fate, god or God, whomever is directing this particular show. In fact, instead of writing, that’s what I’ve been doing- shows.

Since last September I have spent an inordinate amount of time being someone else. It has been a welcome change from being being my often-angst ridden self to be the glib and lovely Gwendolen Fairfax, or the glamorous show girl Janet Van de Graaf, or even the witchy but redeemed Polly Harrington and Prudy Pingleton. Memorizing lines, blocking, and dances, honing mannerisms and accents, transforming myself with wigs and makeup and costumes.  Having to hold so many things in my head has been a great excuse to not let spend a lot of time in my own head rummaging around in Courtney-ness, thus not letting my thoughts out to wander unsupervised on their own.

So it’s only appropriate that on August 17, I will pack away Prudy, my summer role, back into trunks and storage racks, in exchange for a role I haven’t played in years: Ms. Vashaw, Humanities teacher.

Exactly how and why did I get this part?  Thanks to some great new supplements, I’ve been able to have the most “normal feeling” stretch I’ve had since before my diagnosis.  I have energy again (most days). I always said if I was really going to go back to teaching, it would be middle school; and sure enough, that’s the position that opened up at my wife’s school this spring, just as I started to feel well enough to take a chance. So starting with in-service on August 16, I will be a new teacher again.

I’ve played this role before, but I know well from past experience that even a familiar role can look strikingly different the second or third time around. Just like a new theatre or director brings new nuances, costumes, and sets to every play, a new school means a new culture, new kids and parents, new rules and regulations, state mandates and buzz words.

I am a very different me from the person I was two years ago or ten years ago. I think this is what scares me the most. In my previous teacher life, I was the “there early, stay late, advise, coach, go to everything” teacher. I worked at home at night, on the weekends, and over the summer. I had to design my own curriculum at every school, starting virtually from scratch, building resources, writing grants. I rocked it.

Now I’m worried about catching some ick that my body can’t handle or being able to stay functional and awake all day.  I took a part-time teaching job last October, working with at-risk teenagers. I loved it, but I didn’t talk about it much because I was afraid I wouldn’t be able to keep doing it, that my body simply wasn’t up to. I pushed through until January, when our semester ended, but then had to scale back and work on curriculum from home. I spent an inordinate amount of time in the winter and spring going to PT, researching supplements, exploring and testing, and napping. I’ve come a long way since then, but my body no longer plays by any established set of rules, so every day is unpredictable. But since there have been more good than bad over the past two months, I’m hopeful. So very hopeful.

So, Universe, I’m putting it out there. I will be a teacher again. I’m looking for the strength and energy to help nurture and excite young minds, the creativity and resourcefulness to open their worlds and their hearts, and the time to share myself with them, but also with by family. I want to be great, but I will settle for healthy and good. I want this to work. I’m perfect for the part.

And Fairy Godmother, a really good sale on Sharpies, dry erase markers, and sticky notes would be great, too. :)

Travel Through the Journey

In my B.C. world, I was a road trip warrior. I have been known to log hundreds of driving miles in a day, down the eastern seaboard, across the Mississippi Delta, or through the Great Plains, the road stretching endlessly behind and beyond. I have joyfully traveled solo, quietly people watched in cafes, navigated some truly horrendous airports and had laughingly bad travel nightmares. While I’ve never been great at pulling all nighters “just because,” as a traveler, I have crossed multiple time zones, countries, continents, and zones of comfort in the name of a new adventure (or a beer in Amsterdam). Armed with a backpack and a good pair of shoes (or sometimes fashionable boots, because, you know...France), I have easily earned my 10,000 steps before lunchtime.

Today, it took me an easy drive to Concord, a bus, a taxi (what?! Never…), and a well placed IMAX movie to get me through a day in Boston with Sterling.

In the two years since my first surgery, life has looked decidedly different, especially when it comes to travel. It is not to say that I have been house-bound, but I have haven’t gone more than 90 minutes away from home on my own. In the beginning, I physically couldn’t drive, so much of that task fell to Jessie. Now, with fatigue a very real part of my world, driving wears me out. Flying, which I used to do so cavalierly, has become risky for me because there is a chance my body isn’t going to be able to handle pressure changes with all of the extra fluid my body holds on to thanks to lymphedema. I can wear a compression sleeve on my arm, but my back and chest, not so much.

The biggest change is my lack of travel autonomy. While I am capable to getting from point A to point B, there isn’t a lot of point of doing so if I’m too tired to function once I’m there. When we have gone anyplace with the kids, it has been a tag team approach, going so far as to take my parents with us to Florida last year because there was no way I would have been able to keep up (plus, they deserved it).

As I’ve been learning to navigate this new world, I have had to make some very real changes to the way I do life, and travel has certainly been one of those shifts. I have come to realize that my energy is unfortunately finite. I have to be very strategic about how I plan my time, how long it will take me to get somewhere and do something, if there will be a place for me to stop and rest if I get stuck in a fatigue cycle. I know if I push, it will take me a day or more to recover.

So as I was thinking of what I was going to do with Sterling on a rainy day in April during his school break, which happens to not be the same break week as Jessie, Willow, and AJ, I had to be incredibly methodical in my thinking. He wanted to go to a madhouse full of giant bouncy castles. It’s loud, smelly, 2 hours away one way, and without his siblings, I would be co-jumper #1. Thanks, kiddo, but no way in hell were we both surviving that adventure.

I thought of taking him to the little children’s museum he likes in North Conway, an hour away, but the bang for the drive just didn’t seem worth it. I knew I would come back exhausted and there was a strong likelihood that he wouldn’t take a nap.

And then it dawned on me: If I could handle 30 more minutes driving, I could get us to Concord. And if I could get us to Concord, the bus could get us to Boston. And Boston, well… once I got there, I was pretty sure I could find a place to sit down if I really needed.

My early riser was up at 6:00am yelling a detailed narrative of his morning ablutions from the bathroom while asking a full slate of questions about dragons and wondering if I would like to pretend to be  characters from Moana with him.

Barely functional and wondering which non-human entity I had been assigned, I asked him, “Hey Bud, would you like to go to Boston today?”

“Yes!” (Did I note he LOVES Boston?)

“What would you like to do there?”

“Pat the sting rays!!!” So the Aquarium it was.

Today was not a day where I was able to meander the streets of Beantown showing him cool architecture or exploring the nooks and crannies of the city’s many culinary wonders. From South Station, I gave in to literally door to door taxi service. Not only was the weather dreary, but I couldn’t expend the energy walking the streets that I knew I would need to keep up with him in the exhibit halls. Scanning the schedule and knowing when my body typically decides to peter out, I enticed him with a mid-day IMAX movie. He has a thing for marine iguanas (“Can we have one of those for a pet?” “Not on your life, Buddy.”), so getting him to sit for 40 minutes through a 3D Galapagos Island adventure was a breeze, and also a great way for me to regain some functionality.

So Sterling had his first taxi rides today. He took three different trips to the ray and shark petting tanks, two trips to the northern tidal pool creatures, two treks to see the Pacific Octopi and anacondas, squeals and jumping at the poisonous frogs, sea dragons, jellyfish, and seahorses, a cursory cruise through the sea mammals (“Don’t you want to watch the seal show?” --hoping, hoping… “Meh…” Fish and Reptiles- 873, Mammals- 0). I let him eat a soft pretzel with mustard for lunch and he earned himself a new t-shirt by going clavicle deep into his ray-patting adventures. Those Dyson hand dryers only work so well. You can’t actually put the entire child in one.

Warm, fed, and dry, he was asleep in my lap before we got out of South Station. After a few pages of Harry Potter tonight, he told me, “That was the best day of my life!” The day was a success.

By my old travel standards, the day was barely a blink of time. I misstepped by forgetting that I’m not supposed to wear a backpack anymore thanks to my franken-armpit and uncooperative lymph fluid, and I’m paying for it tonight. I will likely have to take a couple of naps tomorrow.  

If all goes well, and if I have enough energy to pick up the prescription, tomorrow I will start a trial of a medication that may help with cancer related fatigue. Maybe next April will find us venturing out to points more distant. Regardless, today truly was one of the best days of my life. I got to have a travel adventure with my boy, one that he may or may not remember 20 years from now, but I hopefully I will.

"Mama, can I brush your hair?"

“Mama, can I brush your hair?”

We are standing in the bathroom, having the conversation about washing our hands, with soap!, for the one hundredth time. Today. Perhaps he is trying to procrastinate or get me off topic, and it works. This is such an act of kindness, a small and precious moment, that I can’t say no.

He sits me down on his little stool, the one he doesn’t need anymore to reach the sink, and begins to work his chosen brush through my hair.  It is the longest it has ever been and I don’t fuss with it much these days- no straightening or curling iron, so it’s wildly wavy and more complicated than he originally planned, I think. But he’s careful and meticulous, gentle, laughing as he brushes it all over my face, Cousin It style.  He doesn’t know how much I love to have my hair brushed or how poignant this moment is to me.

When I was first diagnosed, my first thought was that I wasn’t going to live long enough for my son to remember me. He wasn’t yet three. I would be nothing more than his mama in pictures. In those first few months, it took every ounce of self control I had to not cry every time I looked at him. I worked so hard to make life look and feel normal for him, but my whole heart broke if I let my eyes linger on him too long. Tucking him into bed at night, I would cuddle him up and wait for him to go to sleep before I would silently cry long after he settled into the soft breathing of a slumbering toddler.

I would love to say that this dread went away after my big surgery, or that December after I received my official N.E.D. status, but it didn’t. I knew I could handle pain, and I wasn’t scared of death in its terminal finality, but I was still so terribly, dreadfully afraid of leaving him behind.

When we got through Year One, I knew I was one step closer to not being a myth in his mind. This spring, as he approaches five, I realized that it has been months since I had to pull over on the side of the road to cry. He has real memories now, and I’m pretty certain I’m one of them. I also understand that my anxiety around cancer runs far deeper than whether or not my son will remember me, and I’m working on navigating the terrain of “survivorship.”

In the two years since my tumor was found, I have read countless stories of parents with cancer, and my heart breaks every time.  Tonight I cried over the diagnosis of a man I’ve known my entire life, someone not that much older than me who has a little girl who deserves to have a father who can watch her grow up.

There is so much about this disease, or any one that makes you significantly contemplate your mortality, that weighs heavily on your mind. No one wants to see a child sick, or anyone for that matter, but a parent with cancer has the additional burden of not only wanting to get better, but also fretting and worrying about making sure life doesn’t come crashing down around their children or what will become of the little person who is their world.

I am more grateful than I will ever be able to say for the time I have been given to be part of his world, and it’s because I know that my time may be limited that I work every single day to make sure it is a better place. I’m sure he doesn’t know that in any conscious way, but my hope is that somewhere, ingrained in his memories of me, he knows how deeply he is loved and how his existence makes me fight to not just exist, but to truly live.

So for today, that’s what I have to offer. Nothing grand or especially noteworthy, but a reminder that we are here for all of these precious moments, which, done in kindness and love, cannot help but make the world better for us all.  No one knows how many days we have or how many memories will will get to create, so it’s best to honor every one we are given. Twenty years from now, he may not remember asking to brush my hair, but it is my hope that I will be around to remind him of how much those little things truly do mean. And if I’m not, I hope the accumulation of many little memories paint a picture that small gestures can yield indelible good.