2017: Bounce Back Day!

The brain.  What an amazing, intimate and yet alien mass it is.  Sometimes I find myself thinking about the structures of the brain, the vertical and horizontal weave of networked cells: a microscopic, synaptic forest that makes us who we are.  I think about Jack’s brain, the intense little machine that it has become, and its limitations.  I think about my own memories, represented somewhere within hidden networks of dendrites and axons, some memory pathways so overgrown that they cannot be recovered until they spring to life uninvited through some unrecognized association.  You stumble onto one strand, and find an entire forgotten tapestry.  For me, in February, associations crowd thickly around like little tripwires.  The half-thawed ground, the crackling overhead rivers of starlings on their morning and evening commutes have taken on a dark meaning.  The bare trees seem paused, waiting for the blow.  When the holidays end, when the semester begins, there is a part of me that starts looking over my shoulder.  Sometimes I realize right away that it is getting close to anniversary time.  Sometimes it takes time for me to understand why I feel so strangely off-balance.

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Rituals are powerful, and we have a ritual in our house that is like a spell that wards off some of those swampy, post-traumatic ruminations.  It is time for Bounce Back Day.  Each year on February 27 we talk as a family about Jack’s surgery, with a little more detail each time.  We look at pictures and we talk about the experience.  Then we go do something fun and focus on how glad we are to be together.  This year, I thought Jack could pick what we might do.  He thought about it, and made some suggestions:

  • We can do some Star Wars and Paw Patrol puzzles.
  • We can take all the dirty sheets off the beds and put them in the laundry.
  • We can all go to the forest and throw rocks in the river.

img_1125Ah, the mind of a three year old- both ridiculous and profound.  Just look at that list: he wanted to spend time as a family tackling challenges, keeping the household tidy and running, and playing in the woods.  I think this three year old child just captured my life’s philosophy.

It’s been a while since readers of this blog had some video content, so I’ve curated a few family videos here.  Hope you like them!

As you can see, in the last six months, Jack has become ever more communicative and loves to spin wild stories.  He rarely uses sign language now, preferring instead to use his voice.  He loves to read, often stopping us to ask if we can explain what this or that word means.  He enjoys making up words as well.  For a long time everyone was a silly “baroush”, “hatihot”, or “baroonjay”.  He cracks himself up with these verbal creations.  He can spend a truly impressive amount of time on a puzzle- from 30-piece puzzles with large pieces to mini puzzles of 6 pieces each smaller than a dime.  He remains outgoing and open, and will say hello to anyone.   (The last time we were at AI for a brief check up, he stopped a custodian in the hallway to offer him a high five.  I must say, by the surprised look of delight on the gentleman’s face, I think Jack made his day.)

img_3351Sam remains our happy, sensitive soul.  Right now his great loves are art and playing any game that involves running around with a foam sword.  As you can see in the video, he led me on an adventure under the kitchen table a few weeks ago with his foam sword to fight an annundoolie-flavored dragon (I didn’t know that dragons had flavors!)  I think one of my favorite things about Sam is his dancing.  It’s getting zanier by the day.  He insists on footie pajamas every night and dancing time is apparently right before bed, so the pajamas undoubtedly add to the zany effect of his wild dance moves.

These two bring so much sunlight into our world.  It dances through the tangled bracken of our complicated life, illuminating all the unexpected beauty beneath.  Three years after we sat in surgery wondering what would be left of our son and of our family at the end of it, we are all walking through the forest and throwing rocks in the river together.  It’s awesome.

Medically, we have had an easy year free of hospitalizations.  Our first!  Jack’s had illnesses on and off but no seizures, no reemerging hydrocephalus or such sudden pitfalls.  We have even had some positive developments.  First, Jack had a sleep study this fall that he passed with flying colors.  The study showed that his brain is functioning normally in sleep and there is no central apnea as a result of his brain injury that would require a ventilator for life.  Second, we had our definitive, final MRI showing that his brain continues to grow normally, and his tumor is very much gone.  We are now well past the period for re-growth, so we can say that it’s not going to come back.  We will only be followed with MRIs every 2 years rather than every 6 months to check on the status of his hydrocephalus.  Such a blessing… those words don’t even come close to expressing how incredible it feels to be releived of that burden.  Third, we are weaning him off of his ventilator, (first by removing the forced breaths, and then removing the positive pressure that the vent provided, and now he is on another machine (the Airvo) at night.  This is a very simple machine which gently blows heated, moist air to an area just in front of his trach.   (You can see it in the picture below.) When he is healthy, the work of breathing is all his, and he does well.  When he’s got a cold (which is still somewhat frequent) or a fever (also still quite frequent), his 02 levels drop and he does require the vent.  Amusingly, he doesn’t like to have the Airvo on as he falls asleep- preferring the ventilator.  Some kids like teddy bears, some kids like hard plastic tubing, I guess…?

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We’ve faced continual trouble finding nursing coverage, so lately we’ve had to cover 1-2 night shifts per week ourselves.  As I was writing this post, I learned of another nurse leaving the agency, which will mean that we no longer have Sunday, Monday, Wednesday, and some Friday coverage. Even on nights when Jack is healthy, covering the night shift ourselves is a trial.  We either must sleep on his floor in short spurts while waking to check the Airvo, his food pump or his oxygen monitor, or stay awake.  Each month that Jack does a little better off of the ventilator gives us hope that someday we can let go of constant nursing coverage, but we still desperately need it right now.  Jack is fortunate to have a great team of nurses at his side.  The little man has developed quite a temper, and our nurses do a great job of not taking too much of his nonsense, while giving him real affection and great care.

This May, we expect to have a great visit with pulmonology.  We hope to get him off the vent and discuss what further diagnostics might be needed to reassess his swallow in light of the fact that he has had so few pneumonias this past year (and is now participating in all meals- tasting everything but also clearly ingesting some of what he tastes.)  I think the future for this little boy is very bright indeed.

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Thanks as always for keeping Jack and Sam in your thoughts!

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September: Back to School Thoughts

It was a hot day, so we started our outside play early. With the aid of a cracked plastic bucket of chalk, our driveway transformed into a dusty pastel town- the town of Cucumber Sauce.  Baby blue for the police station, dull khaki green for the bank.  A grocery store, a library, and a park with a bright red swing set and multicolored grass.  We had a balloon parade all the way from the firehouse to the outskirts of town, our hands clutching our imaginary strings while the bright invisible orbs bobbed above us in our favorite colors. The boys ran or rode their tricycles to the different places in town.  They were serious in their errands.  Head to the bank to withdraw funds. Go to the grocery store to buy supplies for our park picnic.  When the errands were done, we sat cross-legged and savored the cloud-soft icing and delicate crumb of imagination, while our sandals and pant legs smeared the dusty hues of our chalk park into a strange summer haze.  A few minutes later we were sitting in the yellow Cucumber Sauce Public Library, while Sam, his hands cupped in the universal book position, told the tale of “The Person Who Was Afraid of Fish”.  Jack sat on my lap and relentlessly interrupted his brother with his own ideas about the story.  I rested my head on Jack’s, sleepily listening to Sam struggle through his half-baked narrative, his voice almost drowned out by the riotous snap-crackle-pop of late summer bugs, and I breathed in the smell of Jack’s sun-warmed hair, pleased to have just one more week before the start of the semester.

 

Maybe it was the imaginary play that had primed the recollection. Maybe it was the reedy, insectile language that surrounded us- the whirring cicadas, the jackhammer of locusts.  Perhaps it was the sweaty scent of his hair, that not-quite-permissible musk of the outdoor child which tugged the memory intrusively into my consciousness.

 

I was nine.  It was my first year at summer camp.  There was homesickness, but mostly I was in love with this newfound land of songs, cedar trunks, jangling mess halls, crackling taps on the loudspeaker at night and damp morning flagpole assemblies.  I loved archery, swimming, crafts, but especially a session dubbed “farm”.  I suppose farm must have been supervised by someone, but what I remember is long periods of just watching things happen- holding, touching and listening.  There was a cow and a calf, a chicken coop, goats and a few sheep.  There were barn swallows and mice in the rafters, blue flies and dust motes in the hot air, and the sweet-sour olfactory cocktail of a barn in summer.

 

There were perhaps a dozen chicks- though calling them chicks is being generous.  They weren’t the yellow fluff balls of Easter fame, seemingly created to rest in a child’s hands.  These were bigger, ganglier and somewhat mangy looking- their adult feathers not quite in.  They were the middle schoolers of the chicken world.  We would eagerly scoop them with two hands, their legs hanging down beneath our fingers in an odd knock-kneed pose, their long, almost naked necks arcing like ships’ prows.

 

I don’t remember seeing it happen or hearing the crack of the wooden door as it came down like judgement on the neck of the bird.  I do remember crowding around the cage with my peers, watching it struggle and claw the dirt.  “What happened?”  “Is it’s neck broken?”  “What’s wrong with it?” “It looks funny.” “Can we help him?” “Yes! Make him a little bed!”

 

The next day, the counselor gave us the broad strokes- our little patient didn’t make it.  But a friend who’d been at the farm just after our class soon told us the manner of it- the wounded bird had been pecked to death.  As I lay in my hot, narrow cot that night listening to the summer bugs, I thought of it.  The struggling bird lying there, panting, one flat, black eye fixed upwards like a beached fish, powerless as the flock  gathered as one and descended.

 

The fear.  I sit in summer sunshine with my sons in the midst of one of the best mornings of my adult life, and there it is before me like a shimmering mirage obscuring the horizon.  This is one of the swampy places, where the terror finds you even in your joy- perhaps because of it.  For me, although we have come so far, this is one of the great fears against which we have yet to be tested: the flock.
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I want my sons to venture out into the world.  I want them to stand at the rocky edge of what they know and welcome what is to come.  I want the acceptance of this unknown world to swell beneath them, the benevolent laughter of their peers cresting to patter gently about them- a welcoming.  I want Sam’s ridiculous dance moves and insane vocabulary to be a cause for celebration, not ridicule.  I want his steadfast love of the color purple to endure until he leaves it behind, untarnished.  I want the visible marks of Jack’s victories to be as unremarkable as the color of his hair- and not a signal that he is unfit to take his place among the flock, that he should be sacrificed.  After all that has been done for our family, all the kind, skilled, adult hands that have borne Jack and Sam up, will it be their peers who take them down?

 

I drove through campus during move-in weekend last week.  The faces of the parents I saw reminded me that this is not a fear that is unique to those who parent a child who is disabled, different, or medically complex, nor is it one that only afflicts the parents of young children.  First day of preschool, first day of college… is there really anything we fear more than the brute power of the flock?

 

Jack will be heading back to DSD today, his first day of preschool.  There are only a few children in his class, all with differing levels of hearing.  This year at least, we have found him a supportive educational community, and we can put aside the fear for a little while longer.  And yet, even after working so hard to make DSD a reality for Jack this year, I struggle with the decision.  Jack and Sam spent a fantastic August together at Sam’s daycare center.  Though shadowed by a nurse, Jack has been able to enjoy all of the ups and downsides of spending his days with peers.  It’s the first time he has been in a non-special education / non-medical facility.  He seems to have been able to fully participate despite the noisy rooms, despite his communication challenges.

 

Are we choosing a small environment devoid of “typical” children for Jack because we are afraid?  Or are we choosing it for all of the right reasons- for the qualifications of the teachers, the amazing facilities, the opportunity for a bilingual education?  And what about Sam, who went off to school today feeling alone and missing his brother. Am I making the right choice for him?

 

The rain came a day after our games, washing away our little town.  Cucumber Sauce- population of three humans plus an infinite number of figments- was gone before we heard the water in the gutters.  The little chalk town where the bakery is run by a pink seahorse who bakes sausage cake for turtles (but not for horses, because horses don’t eat sausage), isn’t a place where anyone can live forever.  We’d be fools, and very bad parents indeed, if we tried.

 

May Update and Mother’s Day Thoughts

The Grotti family had a really fantastic Mother’s Day celebration last weekend, which included a hike, ice cream, and planting new lilacs in the yard.  Since I had been away at a conference for a few days prior, the kids were much more lovey than usual, and I think we all had a pretty tremendous time.

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Following Mother’s Day, we had numerous visits to the hospital for a combination of sick visits with Pulmonology, (Jack is fighting another virus and has been getting fevers pretty constantly for over a week) and follow ups.  Medically, there’s some positive news to share on several fronts.  Some time ago, Dr. Chidekel (Pulmonology) had given us the green light to place Jack on CPAP at nights rather than continuing with a breath rate on his vent.  With the exception of his most recent bout of respiratory illness, it’s been going very well for nearly 2 months.  This continued weaning from ventilator support is a great sign.  We’d love to say good bye to the incessant night-time beeping of that machine!  Our next visit is June 6th, and at that time we’ll schedule a sleep study to learn what’s really happening with Jack’s Co2 levels and with his brain at night.  This is likely to happen this summer.  There will also be another swallow study this summer to help us learn how much progress Jack has made with his eStim therapies.

Jack also had follow up visits with Dr. Piatt and Dr. Walter, who have continued to monitor Jack for any signs of tumor reemergence.  They indicated that we should have an MRI in November.  If that comes back clear, Dr. Piatt said he feels that “we can declare victory over that tumor”.  Another amazing piece of great news!

Jack wowed Dr. Walter with his spoken English skills–particularly when he stuck his finger in his ear and held it up to Dr. Walter, saying, “I got some potatoes in there!”  (I’m sure oncologists could use a good laugh every now and again, but I was a bit mortified by that one…)

I was struck during my recent visits to the hospital at how comfortable –happy, even– I felt when I was there.  I tried to puzzle through this very strange feeling, and a talk I attended by Dr. Kimberly Griffin, who studies the identities of transfer students through the lens of intersectionality helped me to make some sense of this.  For any working mom, identities are always in conflict.  When you explain to the crying child that you have to go to work, when you explain to the supervisor who was expecting something from you that you have to go fetch the sick child, there is an uncomfortable clash of very important identities.  I’m a woman, a mother, a wife, a daughter, a professional, a scholar, an artist, a writer, an advocate, and an educator (and these are just the identities that spring readily to mind).  As this intersectionality theory points out- we are all complex, and these identities wax and wane in primacy throughout the day, the week, the lifetime.

Lately, following some pretty wild shifts at my workplace, I have found my professional identity to be much like a hot, brittle planet orbiting a bit too close to the core of the system for its own good.  Navigating the context in which that identity exists has recently forced me to aknowledge the gravity that I have (unwisely) given to this particular aspect of my self.  Being at the hospital takes all of those questions and those unrelenting self-judgments, and silences them.  That planet is knocked into a completely different orbit when I’m back in those hallways, looking at all that could have been, and all that we have accomplished.  I can have just a single, comfortable “me” when I am there, and no one faults me for that– least of all myself.

I find myself mulling over this lately.  Is there a way to meld my professional life with this other identity?  Is there a way to take all of this theoretical and practical knowledge of information literacy specifically, and education and learning more broadly, and apply it to help other parents of a medically complex children? Is there a way that I can give back?

… I have some ideas.  But that will have to wait until the next blog post!

January: Vulnerability

It’s the blizzard of the century here in Delaware, and I enjoyed observing and taking part in the flurry of activity and conversation that preceded the big storm this week.  While no one looks forward to the inevitable dig-out process, I think most adults secretly relish the little dose of novelty and uncertainty that a big storm injects into the week.  There was lots of talk of bringing in fuel, food, buttoning up the house, and speculation about whether or not the power would hold.

I turned 10 in 1991, meaning that my peers and I were some of the last kids to have a very analog childhood and  some of the first to have a very digital adolescence.  There was a lot of imaginintive play and ustructured time outside when I was a kid, fortunate as I was to live in an area with lots of woods, fields, and a complete lack of threat.  Safe and sound in our little corner of the US, my best friend, Denise, and I invented frontiers.  A deserted island was a favorite, the wilds of Alaska, and the various muddy, lush, or desert planets of the Star Wars universe were our mental playgrounds.  Something about these landscapes seemed to magnify the vulnerability that we felt in childhood while allowing us to explore our pluck and resourcefulness in the face of challenges.  (Yes, the hurricane blew our shelter over, but we’ll be okay, because I can talk to WOLVES.)

In college, my small, tight-knit group of best friends (one of whom is now my husband) and I had a favorite thought-game that we would play over drinks or on long hikes.  If this society that college was purportedly preparing us to enter should suddenly shudder and collapse, what would we do?  We discussed our various skills and personal characteristics, the level to which we could cooperate and remain resilient.  I even went so far as to write up a spreadsheet of prime locations that would provide us with a stable climate, wood, water, and food sources.  We still speak of “the compound” with a certain mix of self-mockery and wistful nostalgia.

Last weekend, John and I eagerly watched The Martian, a fictional survival story about an astronaut inadvertently left on Mars by his team- a plot guranteed to interest the Eagle Scout and wannabe-frontier-girl combo that we are.  Here’s one of the final lines from the film:

“At some point, everything’s gonna go south on you and you’re going to say, this is it. This is how I end. Now you can either accept that, or you can get to work. That’s all it is. You just begin. You do the math. You solve one problem and you solve the next one, and then the next. And If you solve enough problems, you get to come home.” (My emphasis.)

I actually felt my stomach sour when I heard this, and it colored my whole experience of the film.  Don’t get me wrong, I do love grit, and it does take plenty of that to get through serious crises, but I’ve come to a completely different understanding of survival these days.

Two years ago, we became a vulnerable family.  I’m composing this at 3a.m as I sit beside Jack’s ventilator.  The blizzard means that we don’t have a nurse, so we’ll cover the night shift ourselves for a few days.  John spent quite a lot of time wiring in circuits for the generator to ensure that we can keep the ventilator running through a power outage, and I touched base with our nursing company and reviewed our backup plans in the event of a long-term power outage.  I checked our prescriptions to make sure we wouldn’t be caught without anything.  I touched base with our pharmacist, who knows us by name.  Before we were ever discharged from the hospital, I put our name on several emergency lists.  The power company knows about us.  The fire department. The state.

If something were to go wrong, I mean really wrong, (war, infrastructure decay, pandemic, economic collapse, etc.) if we were faced with a frontier, we’d be screwed.  In his book, Do No Harm: Stories of Life, Death, and Brain Surgery, British neurosurgeon Henry Marsh describes the case of a child that he treated in Ukraine for a brain tumor.  After the surgery, unresolved hydrocephalus resulted in her needing a VP shunt, just as Jack does.  Despite the skill of this reknowned surgeon, despite a successful recovery, this child died just two years later.  Lacking fast access to a good hospital, shunt failure was likely the cause of her death.

There is something deeply wrong with the sentiment described by Matt Damon’s character in The Martian, that if you (individually) just have enough brains, pluck, and grit, you can survive anything.  This is an odd statement to make, since the character in the film seems to conveniently forget the multi-billion, multinational campaign that the space program back home had to mount to make his survival possible.

There’s a huge community that has borne each of us up over time, whether you are an able person, a healthy person, a genius, an average just-getting-by, middle of the bell curve, hard working person, or a person with physical, mental, or health challenges. I think these dominant frontier narratives are very dangerous when they conveniently sweep our vulnerable populations under the rug, and, perhaps even more so, when they forget that vulnerability is at the heart of their own story.

I still love blizzards, and I do get excited at the thought of a snowed-in weekend, but becoming a vulnerable family has changed the way that I experience such things.  It’s made me understand that survival is not an individual pursuit.  It’s something we do together.

 

December: Thanks for waiting for this update

Hello, all!  Sorry it has been a while.  Much has happened this fall, and there is much news to share (how could there not be, with two fast-growing kiddos in the house!?) I have taken up a new role at work, and thus have found that shifting sands and new projects of a kind that I have little prior experience with have taken up most of my waking hours and focus over the last few months.  That landscape only promises to intensify, but I am committed to maintaining my writing here- please be patient as updates may be sporadic over the next few months!

Jack had an MRI of the brain in early November, and I am pleased to report that it was clear.  There is no longer a great, gaping ‘cyst’ where the tumor had been, the ventricles are of a moderate (no longer swollen) size, and most crucially, there is no sign of a re-emergent tumor.  I was surprised, thrilled, and a little terrified when Dr. Walter informed us that there is no further need for regular MRIs.  He feels that given Jack’s tumor type, the greatest danger for reemergence is likely behind us.  It will be a strange thing not to get those nerve-wracking tests on a regular basis… and it will be hard to feel secure without being able to tell myself that a recent scan showed nothing.

Further shunt failures are likely for Jack, so there will certainly be MRIs in the future– just not regular ones.  I think this ushers in a whole new phase, and is really great news.

FullSizeRender (51)We had a more sobering visit just a week later with the neurologist who is now following Jack as a result of the April seizure.  Back when the seizure had taken place, an EEG (a test used to detect abnormalities related to electrical activity of the brain) was done.  At that time, we were told that there were some abnormalities with the scan- nothing serious.  I assumed then that this was likely because of the electrical storm that had been happening in his brain just hours before.  In November, we took Jack for his follow up EEG, and found that- while there was no sign of epilepsy (great news)- the scan did not show a perfect, untouched brain that is functioning exactly as any toddler’s might.  There are some impacts that are consistent with the kind of damage that his brain suffered.  I’m being vague here- largely because this is the first time that I have hit upon a part of Jack’s story that I feel I need to treat with some sensitivity… because I don’t know what Jack’s own feeling will be about sharing this information some day.  Our brains- their limits and their capacities- make us who we are.  This is a fact that I’ve struggled with my whole life; I know how important it is for one to make up her own defining narrative on the subject — so really, it’s up to Jack to decide when and how to tell this part of the tale.

IMG_2175We know that there will be some differences in the way that Jack’s brain works.  But we don’t really know what that will look like.  What I can say is that what I see at home is amazing progress- jumping, running, a sense of humor and curiosity, a temper, empathy, burgeoning communication abilities, sociability, and interests that are all his own.  I don’t see him really having trouble making his own way in the world- though a parent never stops grieving when their child’s way is harder than they wanted it to be.  Our neurology visit gave us a reminder of this hard truth, but it is just one small point of data in a sea of progress, and there’s not much that we can do with that data right now.

Jack has also let us know that he prefers to use his voice over his signs.  He’s figured out how to speak over his trach, so he is pretty vocal even without the valve.  One day recently, he got off of the ambulance at the end of the day and we noticed he wasn’t using his voice- he was signing just as if he’d never stopped.  It turned out that his cuff had been slightly over-inflated, cutting off the airflow to his voicebox.  He was nonplussed.  Just switched right back to his signs until we figured out what was up.  He and I also picked our signs back up at a recent, rather noisy event, when we couldn’t hear one another well.  It was gratifying to see him using all the tools at his disposal.   I’m really grateful that we invested the time and energy in sign language for Jack.  When he vocalizes, it is often very hard to understand him– particularly when he tries to tell you a lot all at once– but he can often get his point across fairly well.

Here’s a recent sample of Jack talking (with his valve on) so you can get a sense of how far he has come this semester!  For those that may not be able to understand him or to access the audio, here‘s a quick transcript.  (Sorry I didn’t have time to caption).  He was pretty hysterical over the word “cheat”, and loved saying it over and over.

Sam is ever more chatty.  Each day I am amazed at how quickly the gaps in his knowledge about the world are filling in.  (We had a half hour long, rather loop-like discussion of the weather recently.)  Here’s a recent Sam-rendition of “Santa Claus is Coming To Town”, with transcript here.  I think you can see just how hilarious it is to live with this inquisitive, unafraid spirit who is going to pitch in, have fun, and say his bit… whether or not the details are fully fleshed out.  Wish I had a touch of his confidence!  More to come soon on Sam and the holiday break.  I also hope to share some of my thoughts on the connections that I’m coming to appreciate between patient advocacy and my own line of work in information literacy in coming posts.  I’m also hoping to write more about work-life balance in the coming year.

Thanks for reading, and for bearing with me through the last long lag!

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Seizure / Living “in the woods”

First of all, Jack and Sam are fine.  We’ve had an eventful time since Jack’s shunt surgery, which I will detail in a moment, but first, I want to write about something that’s been on my mind for a few months.

A mother who is involved in an online community of parents whose children have tracheotomies recently wrote about what it means when your child is never going to be “out of the woods.”  I want to talk a bit about that metaphor here, because it has come to have a lot of power for me in the last few weeks.

Have you ever spent time alone in the woods?  (The actual, non-metaphorical woods, I mean.)  Everything in a natural landscape seems to be precisely tuned to the correct volume for the senses.  You can really take things in when you are outside.  Trees alert you to wind, light, recent rain.  Growing things make you note the passage of time in a way that you simply don’t while commuting, shopping, sitting at a desk.  You can watch the air condense and form mist in the evening.  You can actually watch it breathe over the earth.  Abstracts become concrete in this way.  Time, air, growth.

Have you ever spent time alone in the woods at night?  Now, nothing is concrete.  You hold the flashlight’s inconstant doughnut of light in front of you, filled with the inexplicable sense that something that has always been very close at hand has now swung its malignant attention upon you.  The person who serenely watched the movements of clouds over the lake hours before and made existential comments is now scarcely a person at all.  Just a small, small thing picking an unsteady path through the trees, acutely aware of how fragile her existence is.  She is part of the woods, not sitting above it somewhere, as vulnerable as the twig that cracks underfoot as she steps off of the path’s hard clay.

Being a medically fragile family is just like this.  When there are no fevers, no aspirations, no neurological symptoms, you experience a clarity and serenity that’s hard to express.  Your goals, once abstract, are concrete and stay in sharp focus.  You are not distracted by things that don’t matter.  The slings and arrows of the day fall away easily.  Your children’s accomplishments seem amplified when it was never a given that they’d accomplish them.  You feel almost heroic with this energy and are humbled by the thousand acts of grace within your community that you are uniquely privileged to witness firsthand.

And then… night sets in with the phone call in the midst of a busy work day.  Some new symptom, scan, or emergency arises, and the lights are out.  Now, you feel the enormity of the uncertainty of your situation, and your powerlessness in the face of it.  All the perspective you thought you had in the light is utterly gone in these times.  What can you do?  You wait the terror out and hope for the daylight to come back.

We’re back visiting the nighttime woods with Jack.

Monday, we got a call from Jack’s daycare indicating that Jack had a “neurological episode”.  He was just about to have speech therapy, when he put his chin down on his shoulder, became non-responsive, and his eyes diverted to the right, twitching repeatedly, just as they did during the first days after tumor resection.  It lasted two minutes, and it took a full 15 minutes afterwards to bring him back to himself.  I’d say seizure is one of the “big three” that we fear the most in Jack’s case… tumor reemergence being #1, severe aspiration and/or loss of oxygen being #2, and seizures being #3.  What makes this episode so frightening is that its something we’ve never seen before.  What does this new development mean?  After a day in the ER, a rapid MRI scan, an EEG and a follow up visit with Dr. Piatt, we are no closer to understanding than we were before.

I was grateful that Dr. Walter called to assure us that this doesn’t mean that the tumor is reemerging, and most likely the recent shunt surgery is to blame.  There are no guarantees that Jack won’t develop a seizure disorder- after all, his brain has had many assaults.  Indeed, Dr. Piatt concurred that Jack has enough risk factors for seizure that long-term medication sounds like a wise course.  This new medication is worrisome to us, as we don’t fully understand its side effects or implications.  Our appointment with yet another team of doctors in the Neurology unit at the end of the month should provide more information.

So Jack now has a new medication, and we have a new threat to monitor, but life goes on as before.  Monday night, after a day which included a seizure, being restrained for an MRI and being forcibly hooked up to electrodes for a lengthy EEG, he ran around in his diaper laughing his silent laugh and chasing his brother.

imageNo, he may never be out of the woods, but it is clear that he is enjoying the hike nonetheless.

Jack WALKS!

Everyone,

It was one year ago this week that our lives were irreversably changed.  I have no way of knowing what February will come to mean to Jack, in the narrative that he will one day stitch together for himself.  To me, it has deep traumatic resonances that have not subsided.  I   sometimes find myself confronted with very intrusive, vivid memories of the PICU when I least expect it.  Yet also, the experience and the full-sight-and-sound memories of it are an odd source of strength. What a tremendous perspective shift the whole experience has been.  You learn not to sweat the little stuff when you can smile and say that despite an uncertain future, I still have a family of four.

One year after he lay dazed in PICU, clinging to life, Jack grins toothily as he picks out his proud, wobbly steps into our arms.

What could possibly be better?  Jack is walking.

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