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September
30
2020

September 30, 2020

In these last few weeks of hospice we have had a vision of Emile resting peacefully on a raft, floating farther and farther from our shore. This raft has been drifting in a sea of our collective love, shared memories, and well wishes. (Thank you, all of you, for contributing to this beautiful ocean, it has been keeping me afloat too.) The raft has finally crossed the horizon line. He is still there, somewhere, but out of sight to us on shore. 

Emile passed peacefully last night, sometime before dawn.

His beautiful body will be planted in a wildflower meadow at West Laurel Hill Cemetery this weekend. West Laurel Hill is a place that is very special to our family as we have spent a lot of time there together keeping bees, biking, and admiring the trees and goats (yes, really, goats). I have a lot of photos of us all there together. I will attach a few. 

A little bit ago, someone asked Atty about his favorite color. I loved his answer: "all of the colors of the rainbow, PLUS all of the other colors, too."   This describes perfectly how I think we are all feeling right now -- all of the feelings in the rainbow, PLUS all of the other feelings, too. 

I will leave you with a piece of writing that I just discovered on Emile's computer, typed in a document addressed to me, written early in the morning on the day of his first brain surgery, 1/4/19:

"I just had a thought: I learned in physics that our physical mass never actually touches another – the outer electrons of each repel, giving us the illusion of touch. As a neuroscientist, I learned that our brains don’t really see the world, they just interpret it. So losing my body is not really a loss after all! What I am to you is really a reflection of your own mind. I am, and always was, there, in you."

Oh, one final thing: although we greatly appreciate the sentiment, we do not need any flowers or doorstep food deliveries. Because we have all we need, we are hoping that any desire to contribute will be directed towards the Germantown Mutual Aid Fund, or the Miquon School's financial aid fund (any donations to the school made in Emile's name will be directed to financial aid). 

With so much love and gratitude, 

Steph (& Emile).

September
11
2020

Hospice: being seen; knowing how to be held.

We are one month into our bedside hospice vigil.
We take shifts by Emile's side, he is never alone.
We read poetry, rub his feet, sit quietly.
It is a time out of time, reminding me a lot of those early early days of parenting, 
those longest shortest days, those exhausted days full of careful and intimate care taking, savoring the small and shining moments, 
feeling that to be alive and in a body is a miracle. 
 
When the hospice nurse made her first visit to our home in early August, she took out a paper tape measure and wrote down the circumference of Emile's arm.
'We use this to measure how he's doing', she explained.
We will watch him disappear, I thought. After she left, I hid the tape.
A month later, his arms are thinner. But we are no longer tracking this measure in the nursing notebook. 
 
I am thinking a lot about identity.
IS he disappearing?
 
Emile tells this great story about a bike he rode on a solo trip when he was living in South Africa in 1995.
He went on an Emile-style trip (a true adventure, entirely unprepared) equipped solely with a questionable map (written in Afrikaans), two candy bars, and a sleeping bag. 
He lost the trail, slept in trees, carried the bike on his back up a mountain and down the other side, encountered a troop of angry baboons, and narrowly escaped to tell the tale. 
A few years later he was biking around San Francisco and ran into a friend. She asked about the bike he was riding. 'Is that the same bike you took to South Africa?' Emile looked at the bike. It was the same bike. At one point, though, the frame had broken - he had swapped it out and continued to use all of the old parts. Another time, he had replaced the wheels, gotten a new saddle. . .He realized that over the years he had exchanged every single component of the bike with a replacement part. So WAS it the same bike? 
 
What makes a thing a thing? What makes a person themselves?
 
Who is Emile?
How would he have answered this question himself, a year and a half ago?
Maybe: I am a neuroscientist, a peace seeker, a papa. A bicyclist, a friend, a brother, an uncle. 
Who is Emile? 
A year and a half ago, what would I have said?
Maybe: He is a present dad, a builder of dreams, a heart-led pursuer of peace and equality, my partner in love, life and adventure.
And what about now, here in his hospital bed, sleeping in a pool of light slanting in from our bedroom window,
Who is Emile now?
He has lost his signature enormous calf muscles. 
He is not biking, not conducting research, not building. Not jumping off of cliffs into rivers or setting up tents or playing Settlers of Catan. Not flipping pancakes on Saturday morning or throwing kids impossibly high into the air (we would all gasp but the kids would grin wildly, and we all knew he would never let them fall). 
 
He has shed all of the clothes of his identity. 
But instead of a stripping away of self, what I'm seeing and experiencing is more of a stripping bare. Without the clothes, I see the raw, pure Emile.
He is not a shell, he is the nut. He is not a shadow, he is the light.
 
We are more than the sum of our component parts. But what makes the 'more'? It's the energy of a thing. Like his bike, we are the adventures we've taken. The ideas we've let loose into the world, the connections we've made, the lives and hearts and minds we've touched. We are not our arm circumference, or our calf muscles. 
Emile is not disappearing. He is who he has always been becoming. And that energy - it will stay with each of us, even when all of his parts are swapped out for dust. 
 
A lot of the time lately, Emile looks like he's sleeping but he's not. His eyes are closed but if you talk to him he smiles, and sometimes whispers a reply or an insightful comment. On our wedding anniversary last weekend I squeezed his hand and told him, we've been married for 10 years today. His eyes stayed closed, but he smiled that way he does, with his whole face, where all of those lines at the outside corners of his eyes turn into the rays of the sun. I asked: 'After a decade of marriage, what would you say marriage is?' He thought for so long, I was sure he had forgotten the question. 'I would say,' he whispered finally, 'it is being seen, and knowing how to be held.' 
 
Emile, we see you, more clearly than ever. You are not disappearing and you will not disappear, even in death.
And thank you for letting us hold you during this time - it is a privilege for us all.
 
And friends: thank you for being so present with us throughout this journey. At a time of social isolation, it is amazing that we can feel so supported and surrounded by love.
 
Emile stopped eating a few days ago, so he has started his earth-to-spirit transition. I will write again when his earthly journey is complete. 
 
With love and gratitude,
Steph.

July
8
2020

while we still have a nose

Clara and Atty have a book that I love, it's called 'The Boy, The Mole, The Fox and The Horse'. In it, the Mole asks the Boy, 'Is your glass half full or half empty?' and the Boy answers, 'I guess I’m just happy to have a glass.'
 
This afternoon, the kids were inside having unsupervised screen time as that's sometimes what's necessary for everyone's sanity. With a half-hour of time to ourselves, I helped Emile take an outdoor shower. He's not so steady on his feet these days. The wide wooden floor of the outdoor shower is perfect. I watched the drops of water gather and glisten on his eyelashes, catching the sun. The air smelled like wet cedar and sandalwood soap. I scrubbed his back and thought about this question. Is our glass half full, or half empty? The time we've had together is so much more than we ever could have hoped for. The time we might not be granted together in the future is like half of an empty glass waiting to be filled with shared experiences that cancer will never allow us to sip and savor. I'm sad. But also, I am just so darn grateful that we have a glass at all. 
 
The early days of spring were magical. We watched the dogwood begin to bloom, we marveled at the flowers at their peak, we were awoken by the storm in the night that brought the browning blooms raining down. The roses came out, and the peonies, the ants crawling through the blossoms, sipping the nectar, keeping it real. 
 
One night we decided to sleep in the treehouse. We made a campfire, dragged our sleeping bags out back, read stories by flashlight and fell asleep in a big jumble of limbs. It felt so right waking up in the outside air that we decided to keep it up. We ended up sleeping outside for nine nights. We watched the first fireflies light up the dusky night, the bats swooping low to catch their dinner. We had campfires every evening.
 
We knew the tumor was growing. We were waiting for the new drug to arrive. Weeks went by. We had no update to share. With no school, both of us working from home, we had no plan for tomorrow in any way shape or form, for days on end. What should we do? Let's roast marshmallows! And sweet potatoes wrapped in foil! Let's plant sunflowers. And spend entire days playing catch and release with frogs and toads. It was one of the best family vacations we've ever had. 
 
Finally, after several weeks, we got a call from the doctor. The drug has been approved! he said. 
Come in on Wednesday. 
It was Monday. We had just two days. 
That afternoon, we left the house for the first time in weeks. 
We went for a walk in the meadow. 
Emile was slower than normal. 
Shuffling through the meadow grasses, he found a four leaf clover, the first he'd ever found. 
I took a picture. 
The next day, Tuesday, I was getting ready to take a shower and hold a board meeting over zoom. But then I found Emile looking lost on the stairs. I'm so confused, he said. I don't know what's happening.
As I'd been about to get in the shower, I had no pants on. An hour later, I still had no pants on. We called the doctor. I missed my board meeting.

Tell me about yesterday, I prompted. We went for a walk! You found something you've never found before. 
Oh yes! Emile said, a four. . . . he couldn't find the words. 
What year is it? asked the doctor. Emile couldn't answer.
The following day, the MRI showed the tumor growth we knew would be there. We were finally able to start the new medicine on a Thursday. 
 
It is now several weeks later. At first we saw improvement. Emile has no more trouble with word recall, as he did that first day, but has lost the ability to store new memories, so keeping track of meals and medicine and the day of the week is a challenge. Even so, though, he's still himself -- still able to reminisce about past adventures, talk about his work in Columbia, have big and important conversations about race relations in our broken country, voice poignant thoughts about the state of the world.

You know, he said, a few weeks ago, while eating second breakfast, science fiction really let us down in envisioning online education. It really could have outlined a vision for a model we could be aspiring to right now! How true, Emile! I love the way you think. 

But then, though, in the next moment, he looked out of the open window and decided, based on the quality of light and the smell of the air, that it is clearly September. 
And he seems to have lost a sense of himself in space -- he has no mental map that tells him where he is and where things are. He needs help finding things big and small - the bathroom, our bedroom, the car in the driveway, the drinking glasses. 

One day he had a seizure and became 100% blind for an hour. All I could think about was how could a fully blind person ever navigate around all of the LEGO covering all of our floor space?! We were all incredibly relieved when the vision (mostly) returned. But now he's on seizure medication in addition to all the other meds, which makes him sleepy. 
 
His memory is getting a bit worse now. And his ability to walk, too. The shuffling walk I first noticed in the meadow persists, and now he leans heavily to the right. I channel my rugby self, I bind on to his shirt and try my best to be his prop when we walk. Today I borrowed a wheelchair for the first time and was so relieved. He had his first fall today, too. We will need to be careful.
 
Does it matter if the glass is half full or half empty? Not at all. We have what we have, life is what it is. We can't change the hand we are dealt, but as the Mole says, 'One of our greatest freedoms is how we react to things'. 
So I am trying to focus on being grateful for the glass, and savoring each sip we're afforded.
 
Tomorrow, Emile will not remember today's beautiful outdoor shower, the way it smelled, the way we looked up through the water and watched the boughs of the spruce tree waving slowly in in the gentle wind, like dancer's arms. But memories are always temporary, in the long run, aren't they. 
What is lasting is our ability to breathe deeply while we still can, and appreciate what's under our nose, while we still have one. 

What's under your nose, today?
 
We are stopping the experimental medicine, as it doesn't seem to be working. We will likely start a round of chemo later this week. I will try my best to keep you posted. 
 
Love,
Steph (& Emile)

  

April
29
2020

in need of some chewing gum

dear friends,

these are heavy times, and we are sending you all our love.
some of you have lost jobs,
have lost loved ones, 
have lost faith in a reliable tomorrow. 
we hope you are holding up ok,
finding moments of beauty, joy, and hope.

like each of you, we have been fully immersed in this moment in time. 
changing from our night pajamas into our day pajamas, 
juggling conference calls and classroom zooms, 
constructing and deconstructing ever more elaborate pillow forts, 
hiding in the bathroom to answer work emails, 
conducting 2nd grade math lessons, 
magically creating edible dinners out of pantry remains. 
it hasn't been easy, that's for sure. but our overriding feeling is that of incredible gratitude for all that we have: a home to shelter in, enough food to eat, love for each other, bountiful art supplies, music to buoy our spirits, the natural world providing us with endless opportunities for wonder.
and so much more.

life is a miracle. we are taking nothing for granted. 

we haven't written an update in a while, and that's a good thing.
we've been immersed in family life, enjoying a calm spell, ignoring the cancer to the best of our ability.
we knew the elephant in the corner would make some noise at some point. . . but we were hoping for a long period of quiet first.
we feel very grateful for the calm we had. 
and also, dammit, it wasn't long enough.

last friday, emile was scheduled for a check-up MRI.
he's been feeling so good, and we've been so focused on The Virus, we weren't even thinking about cancer. 
so the results of the scan really took us by surprise. 
the cancer is growing again, in two places. which means the drug Emile's been taking has begun to stop working, and we need to make a new treatment plan - quickly.
luckily, there is a phase 1 clinical trial of a drug we feel hopeful about, here in philadelphia.
unluckily, the trial is currently full. we are on the waiting list. we have been told it might take 5-6 weeks for a spot to open. this is too long to wait.
(what has to happen for a spot to open? i don't want to think about this.)
apparently, there is something called the 'Compassionate Care Clause': in certain situations, the FDA allows companies to provide their experimental drugs to people outside of clinical trials. we are trying this route. this is not common, or easy, but it is giving us hope none the less. 
if we can't get the drug, we will likely start two new chemo drugs soon, and try to keep the cancer at bay until the spot in the clinical trial becomes available. this would not be awesome for many obvious reasons.

we will keep you posted as this next chapter in our journey unfolds.

in the meantime, would you do us a favor?
would you go hug someone you love?
and if you can't be with them physically, 
maybe give them a call or write them a postcard and tell them you love them?
This time we have together, it is so precious.

below is some writing from emile.

thank you for being a part of our journey, and for letting us be a part of yours, too.

with love, hope, and tremendous gratitude,
steph & emile.

--------

I think I may have mentioned my old VW bug the last time I wrote a post. It was the tin can with the lever on the floor to open the reserve tank. I feel like we’ve been cruising along in this car for the past 6 months: puttering along and buoyed by a drug that has kept the cancer at bay. We even started daring to dream into the future. . . 
 
But last Friday the engine sputtered. In my VW bug, when this happened it could be one of a number of issues. My hand would instinctively go to the little pouch in the door’s upholstery to grab a couple of fuses. I’d check the lever on the floor that opens the reserve tank. And that’s where we were at when we got the call a few days ago from Dr. Bagley, my oncologist. I had gone in for my regular MRI, and he connected with us for a telemedicine meeting afterwards to discuss the results. I’ve felt fine – the vision may be a bit worse, and I may have felt a bit dizzy a couple times, but otherwise great. But for the first time since I started this treatment, last Friday’s MRI revealed that there are two pretty conspicuous spots of the tumor that are growing.
 
I’m in the sputtering bug. Like that one summer with my friend Jay when we hopped out and fixed a leaky fuel line with some chewing gum, everything feels pretty sketchy right now. Heather is there next to me, furiously scraping the ice off the inside of the windshield, as she would on cold days in high school when I would drive us in, and it’s not clear whether we have enough speed to make it up the icy hill along the dirt road on our way to school. But as I told Steph after picking her up from the kitchen floor last night: I’m still here! And I feel good. And that’s something. And there’s even a chance that we have something else available, which may give me a bit more time. 

That bug. I almost lost a wheel once. Broke down more times than I can count. Slid off the dirt road into a tree, and spun completely around at least twice on that little hill near the Jablonski’s house. Partly because of friends who were supplied with strategic reserves of rubber bands and twist ties, and the occasional mighty push, I was never stranded. It served me well. And I’m hoping that my body took notes. 

Still sputtering! 

emile

 

 

December
13
2019

anniversary reflections on cancer year 1

Last Saturday afternoon:  cookies in the oven, the woodstove roaring, and all four of us happily in our pajamas at lunch time. It was the first weekend in December. Just like one year ago, we hopped in the car (pajamas finally, reluctantly, temporarily removed) and drove to the Germantown Kitchen Garden to choose a Christmas tree. Should it be big this year? Or small? Should we pick the scrawny tree that no one else will choose? Clara and Atticus debated as we drove. Finally they settled on a plan: they would hold hands and walk around the farm until a tree 'called to them.' 

We set up the chosen tree in the living room. She's big, beautiful, skimming the ceiling. We decided to leave her undecorated for a while because we wanted some time to truly appreciate Just The Tree on her own. But also because I was having trouble bringing the box of decorations up from the basement. 

I am having big feelings this year as we approach the holiday season, and our one year anniversary of this cancer journey. The average survival time for a person diagnosed with glioblastoma is 12-15 months - only 25% of patients survive more than one year.So. We are beating the odds. Other patients who we've met since starting down this road have not been as lucky. I remember putting the decorations away when Emile was in the hospital recovering from his first brain surgery. Full of fear and hope, love and terror, I wondered what life would be like when I took the box out again.  

And here we are - 12 months later. And we're ok. Life is different, immeasurably different, beyond the changes to Emile's vision and weirdly shaped, baby-soft skull. Here's one difference: Our hearts — they're so much bigger. Our appreciation of each mundane moment — immense. Our understanding of the global village that holds us and supports us - YOU - you rekindle our hope when our optimism is lost, you demonstrate by example how to show up for a friend -- with a poem or a postcard, with a hand squeeze or a mango.  It's been the most challenging year of our lives. And also - for both of us - the most beautiful.  Thank you for shining your light, and sharing it with us.   

So, life is different. And Clara and Atticus are different too. They're taller and wiser, Atty's hair is longer and Clara's is much shorter. (You may remember how Clara chopped her hair off in solidarity when we shaved Emile's head before surgery #1. She's keeping it short in a different sort of solidarity: "People call us 'girls'," said Clara one day, "because Atty has long hair. So I'm going to keep my hair short, so people will just call us 'kids' instead.) They're both still as silly as ever, but with a new solemn undercurrent that can reveal itself at any time. Just today in our carpool to school, for instance, Atty saw a truck with its company name emblazoned on the side: 'Kancor Elevators'. "Cancer!" he sounded out, proudly. "That truck says cancer!" he exclaimed, again, as if he was seeing our family name on a billboard. After big sister smartypants corrected him, our carpool buddy asked, "what's cancer?". The kids went uncharacteristically silent. "It's a kind of disease," I said. "Like the flu?" said our buddy. "Much, much worser," said Atty. "I don't think so," said our buddy. "The flu is really bad, my parents told me." Clara and Atty stayed silent.

With all of our fingers and toes crossed, we are hoping to continue beating the odds -- only 5% of patients survive more than five years. It is hard to ignore the Tick of Time in the background of our every day. Are we making the right decisions about how to spend our time? Are we making the most of every day? These are important questions that we all have to ask ourselves, as the future is unknown to us all. (But, not all of us have stage four brain cancer. So, yeah.)

In the spirit of making the most of this time together, on Sunday Emile and I got a babysitter, and went on a date to the Skyspace at the Chestnut Hill Friends Meetinghouse. Have you ever been there?? If not, you should go -- it's really, really beautiful. You lie on your back and look up at the ceiling of the sanctuary. Just before sunset the ceiling opens, and a large hole is revealed, through which you look up at the sky in such a way as though it were framed. Soft lights surrounding the opening on the ceiling change colors over time, and the color of the sky, in contrast to the colors on the ceiling, appears to change colors dramatically as well. To me, it felt like a meditation on perception. The sky WAS actually changing, as birds flew overhead, as an airplane left its contrail, as the sun slowly set. But the perception of the sky as deeply purple one moment, and vibrant turquoise the next, had to do with the changing color of the light that was framing the opening at any given minute. What we see in front of us, whether it's the sky, a stranger, a loved one, or a life challenge, can be viewed and experienced So Differently depending on the light that shines on and around it.  

There's been an amazing outpouring of light on and around our unfolding journey, and it's helped shape our perspective this past year. Amazingly, this light has allowed our experience to unfold with incredible beauty. Until this year, I never knew the sky could be this color.

And now, I'm ready to bring up the lights and decorate the tree.

With wishes for peace and light in this holiday season, and in the year to come,

Steph & Emile.
---------------------------------

P.S.: Last month, we got a letter in the mail from the Pastor of a Unitarian Church that Emile used to frequent when he lived in the Bay Area. He loved the interfaith, welcoming, social-justice oriented spiritual community this church cultivated. The Pastor's letter included a transcript of a homily that Emile preached at the Church at her request, just over 20 years ago. The Pastor had asked him to share with the congregation what shaped his commitment to social justice, what sustained him, and how he faced disappointments and setbacks. I'll post an excerpt of the sermon, below. Just like the Skyspace, the sermon is also a mediation on perspective: young Emile wrote of Sisyphus and his rock, remarking, “whether it is a comedy, a drama or a tragedy is up to the one pushing.”

An excerpt from Emile's homily preached at the Unitarian Universalist Fellowship of Redwood City on November 12, 2000:

 ". . . The question that has been more on my mind recently is not actually “why do you work for social change,” but “why do you CONTINUE to work for change.” This seems to be a problem that many burned out activists face – it is the “Sisyphus problem.” The Greek character Sisyphus was doomed to eternally roll a massive boulder up a hill only to have it roll back down just before reaching the summit. . . Many disgruntled teachers /activists have predicted that the frustrations of working for social change would dim my fire as it had theirs. But I don’t think this will happen. I don’t think it will happen because I’ve had a growing realization, that is quickly becoming a philosophy, about Sisyhus: it is that his story only becomes a tragedy if he doesn’t like pushing the boulder – or if he is fixated on the summit. What if he has a friend there to help him push? What if they make games of it and take a different route every time? What if they sing while they work? What if they actually enjoy the exertion and get stronger in the process? The premise is set: the boulder must be pushed – but whether it is a comedy, a drama or a tragedy is up to the one pushing. So why continue working for social justice, even in the wake of frustrated outcomes? Because I want to do the right thing; because I want to help love to grow; because I want to continue changing myself; and because no matter where the boulder rolls, I enjoy the pushing." 

October
28
2019

In search of mangos.

Many years ago, I took my bike to Africa and spent a month cycling by myself through Kenya. It was one of the most important trips I ever took; it gave me more insight into the consequences of colonialism, and it provided me with a breakthrough in my understanding of race and racism. But it was a hard trip. Terrible stomach bug in the middle of nowhere; people streaming towards me every hour asking for things I couldn't give: a VISA, a scholarship, medical supplies; street kids fighting each other for access to my imagined riches every time I stopped. And then, 2 weeks into the trip, my front wheel caught the lip of a little drainage ditch and I went over the handlebars. As I sailed over my front wheel, I acknowledged something important to myself: this trip sucked! Moments later I hit the ground, rolled over my shoulder, and ended in a sitting position. I sat there for a moment longer in the red dirt considering myself and my bike, which lay in a bit of a jumble next to me. I then picked myself up and wheeled my bike over to the closest little cafe (a thatched hut with a faded beer advertisement in front). I ordered a beer (it was 10am) and sat down in the lone plastic chair. Now that I had acknowledged that I was not having fun, I felt liberated to look objectively at my trip and plan my next move. Upon reflection, some of the magic that I had experienced that was blurred amidst the frustration of the previous weeks came into focus: the herd of zebra that I had ridden through in front of the backdrop of the African sunset. Waking in my tent to the sound of munching in the night to discover that I was feet away from grazing hippos. The money changer in a small border town who had taken me under his wing and spoken enthusiastically with me all night with the only English he knew: all the lyrics from Tupac songs. I also reassessed my method on this trip: for some reason I felt compelled to set and reach specific goals each day, and my regular failure to do so (owing to the rains would come down each afternoon and turn the roads to clay) provided a gnawing sense of unease.
When I was done with my beer, I fixed my spokes, hopped on my bike, and headed in a new direction -- abandoning my rigid goal and setting off with a new travel philosophy: a vague direction, but a clear goal: This day, a mango. It wasn't hard to find, and wow - was it good! From then on in the trip, I embraced whimsy. The 'point' of each day shifted from reaching a point on a map, to finding 'mangos'. And the fog lifted. 

I think the surgery that I underwent last month was my over-the-handlebars moment in this cancer journey. Continuing this little side trip I've been on to resolve some infection in the surgical site on the back of my head, we found last month that I had acquired meningitis (that the infection I had acquired in my surgical scar in California had migrated its way into my brain). So I had bonus surgery #2: this time to dig deeper and root out any internal infection. While in there, they found some: bacteria and yeast(!) that was hanging out in the bit of skull they had removed to gain access to my brain back in February.

So they chopped out the infected part of my skull - a piece about the size of a silver dollar that was on the back-right of my head. I waited for them to tell me what they replaced it with: bone from my hip? Titanium? Vibranium? But no answer was offered – none to give! They just took that piece of skull out. Now it’s just a section of my head where fuzzy scalp lies right on top of brain. Steph says it pulses slowly –surely there was a Star Trek character that looked like this…

While this surgery didn't remove any brain, it was in some ways more invasive, because I realized that it took out something deep: a core element of my identity.

I have always been drawn to 'danger-fun' -- the 80-foot rope swing over the Russian River last summer; jumping between trees as a barefoot kid, and off cliffs into the water as an adult; wrestling, kick boxing, rugby, mountain biking... This is the part of myself that needs shedding. It is a bit sad to see this part of myself go; it's been with me for so long, but this is the consequence of rebirth, and I am now reborn -- complete with the soft spot on my near-bald head!

After a couple weeks recovery in the hospital, and then a couple weeks at home dragging an IV pole around ("rolly polly", the kids called it), my flight over the handlebars is complete and I'm sitting with virtual beer in hand, thinking: "yeah, it sucks... I lost a part of myself." But that's definitely not all of me. In fact, it's a part of me that I've known is only temporary - I can't be jumping off 40 foot cliffs into the ocean as a little old man. Sure, this is earlier than I imagined, and the soft spot on my head makes me feel vulnerable in a way I've never felt before. But loss always provides new opportunity; And now I get to choose what fills that identity gap, I get to allow some other part of myself to develop and grow - like those opportunistic shoots that rise up to the sun once the tree that has been shading them out comes crashing down.
So here's to opportunity and growth!
Now where's that mango?

October
1
2019

Summiting Everest

Yesterday afternoon we went on a walk.

We started by making our way to the front door.
Out the door, and down the front stairs, slowly.
One of my hands was wrapped tightly around Emile's waist, 
the other was holding a pile of coffee-stained hospital bills I've been carrying around for months.
At the bottom of the front stairs, we stopped for a deep breath.
The warm day was giving way to cooler temps.
The fall breeze felt nice on our faces.
 
At the end of our front walk, we turned left.
Our goal was to reach the mailbox at the corner. 
Our home is the the fourth house from the corner.
 
We stopped midway for another deep breath,
and some tears of frustration.
 
When walking to the corner feels like climbing Mt. Everest, 
it can be really,
really,
depressing.
Especially for a super hero.

We wondered: what if butterflies turned into caterpillars, and not the other way around? 
 
We made it there, eventually, and we made it home again.
On the way back we noticed some sunflowers, still blooming,
and the leaves of the Japanese maple starting to turn red/purple at the tips.
 
It was the longest walk Emile has taken in the past three weeks.
 
It's been the hardest three weeks of this journey yet.
 
After the meningitis and fourth surgery earlier this month, Emile was in the hospital for almost three weeks.
He came home for two days at one point, but developed a fever and headache that sent him back to the ER for more testing.
The infection has been hard to kick, and the drugs that combat the infection are hard on his system - the dosing is hard to get right.
 
Finally, he came home again this past Friday.
After the surgery in California, I remember feeling shocked when Emile needed a wheelchair to get from his hospital bed to the car.
This time, I was mentally prepared.
 
It's hard on the kids when their papa is so weak, but we are finding new ways to connect. Atty loves curling into a ball on his papa's lap. Clara sits in Emile's chair with him and they watch 'America's Got Talent' on the laptop, crying when the contestants win against all odds. 

And I am feeling stretched, but am getting more comfortable with administering the IV medications, and better at knowing the edge of my limits. I'm asking for help from neighbors and friends with less hesitation. We're so grateful to have an amazing network of friends and supporters, helping us in so many ways, every day. This morning we were talking about the difference between 'healing' and 'curing'. You can't cure Emile's cancer, dear community, but you are helping immensely with his (and my) healing, allowing us move through this journey more whole than broken. 
 
It's been hard to write an update, as we've been so tired and words are hard to find.
But we are doing okay, and getting stronger every day.
 
With love and tremendous gratitude,

Steph & Emile.

September
11
2019

the sneaker wave

Late Monday night Emile developed a very high fever, accompanied by a wicked headache and a very sore neck. I've always chided my mom for sleeping with her phone under the pillow and her ringer on high (just in case my sister or I have a late night emergency and need her) but that night I felt extremely lucky when she answered my call at 3:30am and hopped right in the car to come over.  Emile and I left for the hospital, and were there within the hour. 
We learned that Emile had meningitis, caused by a bad infection in his surgical scar. After a day of tests, morphine, and consent forms, he underwent another surgery early this morning. The surgeon removed some infected bone, and inserted a drain to deal with a cerebral spinal fluid leak that was inhibiting proper healing after the last surgery. He's out of surgery now, very groggy, but ok.

Over Labor Day weekend we took a trip to the beach. Clara and her friend spent a lot of time joyfully getting pummeled by the weekend's big waves. It was always the second wave in the set that caught them off guard. I'm remembering these waves as we start to come up from air after this surgery, just as we were finding our footing after the last surgical pounding. We are feeling a bit wiped out, and wishing for a longer period of calmer seas.

I'm trying to take inspiration from some sea glass we collected in California this summer. Stormy seas can turn trash into the most beautiful treasure. I'm having trouble finding the treasure while still in the midst of this current wipe-out, but I know it's there because it always is. I'll let you know when I find it.  

The journey continues, as it always does for each of us.

With gratitude for this day,
Steph.