Ode to Home Care Nurses

They are the sturdy, ready ones- unnoticed unless there is a problem.  The rebar in the concrete bridge.  The brake beneath the elevator.  Unthanked though they bear up the skyscrapers.

They are the ones we hope we will never need. The spare tire in the trunk.  The automatic activation device on the reserve parachute.  The hidden accelerometer ready to deploy the airbag.

Expected to act with the efficiency and precision of machines, yet willing to give unselfishly of their hearts to their charges.  Live long enough, and you’ll pass through their capable hands at least once or twice.  They are home care nurses, and they have an often impossible job.

This blog has often expressed the underlying tension of life with home care nursing: it is a fundamentally transactional relationship that cannot be simply professional and transactional in practice if it is to be truly effective.  Despite its many contradictions and hardships, it is our access to skilled, professional, and trustworthy nurses that has allowed John and I to sleep peacefully at night, to continue working by day, to send Jack to preschool, and to continue to work when he needed to stay home sick.  Nursing is the oil that has allowed the complex machinery of our lives to chug.  Our household has thrived due to our nurses.  Without them, all of our plans would have ground to a halt a long time ago.

It’s not just logistical; Jack’s many nurses have played major roles in helping Jack learn to self-advocate and express his needs, to become potty trained, to read, to dress himself, to gain mobility.  We have always shared our hopes and dreams for Jack with his care team, and they have always worked to help him meet his goals- work that goes far beyond the dosing, monitoring, administering of feeds, and operation of equipment that is detailed in Jack’s plan of care document.  And I daresay that our lives have been enriched too as we’ve met so many people from so many walks of life. We’ve found ourselves learning about growing up in Cameroon, Sierra Leone, Guyana, about experiences overseas in the military, about life as an American Muslim, about working two jobs to finish nursing degrees, and more.

It is hard to say goodbye to these folks.  It’s also a little scary to make the decision to lessen the safety net now that Jack is proving himself fairly hardy now that the trach is out.

On New Year’s eve, as we awaited the 10:30pm arrival of the night nurse for the last time, John and I reflected on one of the special joys of parenting- watching your children grow into their own idiosyncrasies, which (as John put it) is a bit like seeing yourself in a warped mirror.  Yet, with Jack, it is often more like looking through a kaleidoscope- we see sparkles and flecks of so many people in his turns of phrase, his gestures, his developing sense of humor.

 

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Jack: Packed up like a nurse and ready for anything.  (June, 2016)

He likes to pack things up carefully and lug a lot of bags with him.  When he was just 2, he used to hunch at the table drawing an endless pseudo-writing sentence (we posited that he was charting).  This must have been what it was like when all the adults of a small community raised a child, rather than just two parents.  Though in future years he may not remember the faces of all the people whom he has loved in his early life, these little fingerprints on his personality will always be woven into the fabric.

We saw this powerfully this week when we dropped off several crates and boxes of supplies that we no longer need to Nurses ‘N Kids.  We had not visited NNK for some time, and we were very thrilled to be able to show Jack’s progress to the team there.  Though Jack professed to remembering little about Nurses ‘N Kids, he caught a glimpse of a few favorite nurses and teachers from his earlier days and melted into their arms, a flood of memories accompanying us on the drive back home.  It was a joy to see his pride in his own accomplishments.

While John and I look forward to more freedom over our schedules in the coming weeks, we’d be remiss if we did not pause on this new year’s day to think about our nursing team and to thank them all.

So, I’d like to toast to these home care nurses, some of whom entered our lives for just a short while, and who have come and gone, and others who are with us still.  Thanks for being the guides along the path for Jack.  Thanks for being the structure beneath the ediface, the watchful eyes, the problem solvers, shields against emergency: Esther, Sherry, Jay, Emmanuel, Pat, Carol, Mohammad, Melanie, Sherri, Michelle, Haja, Barb, Flora, Nicole, Peggy, Robert, Kelly, Anita, Francesca, Michelle, Grace, Alpha, Susan, Kim, Tanya, Amanda… and perhaps a few others, too.

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Delaware School for the Deaf preschool graduation, cheered on by Ms. Esther.
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Trach Life Comes To An End!

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In the obscure world of ultra-marathon swimming, those who complete a swim don’t always get a lot of perks.  Swimming the English Channel, completing the Manhattan Island Marathon, swimming the Catalina Channel (or all three) doesn’t get you a juicy book deal or a slot on Oprah- though it could happen, if you undertake a swim that has never been completed before.  Diana Nyad, in her swim from Havana, Cuba, to Key West, was one such swimmer — the only confirmed person to survive the fickle 110 mile swim.

Sitting here in the hospital after two incredible days, I find myself trying to find the right way to describe decannulation, and what that means to us, and ultra-marathons seems to fit.  It’s 4a.m., and Jack is fast asleep.  There are no alarms, though he’s hooked up to his pulse-ox.  The room is strangely uncluttered, but for the usual underfoot items: my purse, a winter jacket, a smattering of new toys.  No ventilator.  No piles of medications and strange contraptions to deliver them.  I could get used to this kind of stillness.

I think what I’m experiencing as I watch his great numbers on the monitor and listen to his unaided breathing is a bit like witnessing an ultra-marathon swimmer stride out of the water and onto the beach.  It may be a little too soon to say for sure, but I think that today Jack has climbed onto a shore which seemed unattainably distant for a long, long time.

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Bye Bye Trach!

At 12:30 on Monday, November 26, 2018, we were in the Nemours PICU, where our journey began.  There, sitting in the center of a crowd (several doctors, nurses, and Mom, Dad, Nana and Da) Jack removed his trach himself and, with a beaming, crooked smile, tossed it on the bed beside him- 1,727 days after it was first placed.  It’s been his friend and lifeline for a long time- and his signature too- he worries about his friends not recognizing him when he goes to school without it.  It’s also been a millstone tied about our family’s neck for those 56 months and 21 days.  Such a tiny little thing of plastic and silicone, weighing in at just over an ounce, but with it has come a kind of forced march of sleepless nights, tracheitis infections, missed school and work, nursing troubles, difficult calls to insurance companies, durable medical equipment deliveries and errors, lengthy discussions with teachers, school nurses, case managers, and transportation.

 

Watching Jack pluck it out so matter of factly, and then, with a twinkle in his eye, ask every person who enters his room to “look- what’s different!?” feels like an ending to a marathon.

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Jack getting prepped for a sleep study, July 2018

Of course, we can’t stretch this analogy, this image of a triumphant finish, too far- it easily warps and breaks.  I must be clear that this is not a narrative about a miraculous cure.  In preparation for this step, Jack underwent many tests this summer and fall, including a salivagram which investigated signs of aspiration.

 

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EEG in 2018.  No problem.

He has failed all swallow studies (there have been three) to date.  The salivagram study showed much the same.  He has only a partial, not truly functional, swallow, and still aspirates some of his secretions to his lungs.  The trach was placed to help him to protect his lungs from this threat of aspiration and subsequent pneumonias. So what has changed?  Why take this step now?

The answer isn’t straightforward.  In essence, nothing has changed.  However, compared to many trach kids, Jack has a strong record of avoiding pneumonia, so he seemsto be able to protect his airway.  As he has grown stronger, developing physically, Jack has needed his ventilator less and less, and it’s now been several months since he was hooked up to it- another reason that a trach is not as essential as it once was.

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Pneumonia, June 2018.  Very tired mom.

For Jack, the balance of factors had simply shifted and the trach was causing more problems (infections and reduced independence) than it was really solving.  So, for all of our exhillaration at leaving the trach and all of its logistics behind, this isn’t really an ending as it is the start of a new kind of expedition.  The first trial of his readiness came in the hospital as we waited to see if Jack could maintain his oxygen during sleep without the aid of his trach, a feat which he has passed with flying colors.  The next trial will be whether or not his first cold after this decannulation will set him back with a serious pneumonia.

 

One thing that I have learned is that medicine is not so much a clear equation or list of checkboxes as it is a careful reading of evidence, a navigation around dangers based upon expertise and lived experience, a series of team decisions.

In her historic swim, Diana Nyad faced dangers of dehydration, hypothermia, jellyfish, sharks, and unpredictable seas.  She also had to manage incredible monotony and sensory deprivation during the 53 hour experience, and when she emerged from the water, people saw a lone hero defying the odds.  But something worth knowing about ultra marathon swimmers is that they are never swimming alone.  Perhaps they swim in carefully managed events with plenty of staff on hand.  Or, perhaps they are accompanied by a single partner in a kayak who paddles alongside, ready to intervene and support.  In Nyad’s case, she swam behind a specially designed catamaran carrying a 35 person support crew.  In addition to her managers and handlers, that crew included navigators to keep her on a straight course, boat operators, weather routers, medical staff, and shark experts.  I imagine her team watching her progress, reviewing data, discussing, correcting course, changing plans here and there, keeping the goal in mind and working together to bring their knowledge of the swimmer, the seas, and the risks to bear in the task of supporting this unique person in her unique journey.

While under observation, Jack has enjoyed visits from a parade of people who have supported him along the way.  Sam arrived with a present specially picked for his brother and a “two thumbs up” card.  My parents stayed and played lots of go fish to pass the time while we talked about the hours they’ve spent driving to and from NH to help us. Jen, once our PICU social worker, sat with us for a long while, remembering and celebrating.  Jana, child life specialist who helped us reintroduce the twins to one another after their three-month separation met us in the new child life clubhouse while Jack played. Bob, the RT who first told us “It’s Jack’s world, we’re all just living in it!” came by with huge hugs and smiles. Abby was there, the PICU nurse who calmed Jack during some of his worst pre-op nights with a magical “chest pat”.  Kim and Mary, poked their heads in, PICU doctors who had seen him through his post-op complications.  Jack’s pediatrician (and super mom of another amazing medical kiddo) Melissa stayed for a long chat. Even Dr. Piatt stopped by, looking a little older and more distinguished, but still sporting his characteristic bow tie.  We texted teachers from the School for the Deaf, nurses, coworkers and family and friends near and far.  It’s a huge crew that has followed and supported this kid.  Survival, after all, is something that we do together.

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While we were finishing out our second day’s stay, the pulmonology team asked if I would be willing to meet with the parents of a 2-week old little girl just a few doors down from us.  The otherwise healthy, full term baby with exquisite brushstrokes of red-gold hair had been trached almost at birth.  Her shell-shocked parents had done their first trach change that very day.  “But how are we going to do this?” they asked.  “How will we ever go back to work?  How will we transport her? How will we carry all of this  equipment?”  We talked for a long time, and I watched them swirl the bittersweet new vocabulary of this unexpected ingredient in their daughter’s life around their mouths, resolute and terrified.  “You can do this,” I told them.  “You’re not alone. Take it one day at a time, and start by building her team.”

 

As my own little marathon swimmer stands on this unfamiliar coastline, a small bandage on his neck and a huge support team cheering in the background, I look forward to introducing him to the campouts and waterslides previously out of reach but which he will get to experience on this new shore.  As for me, I can’t wait for the simple pleasure of going to bed when I am tired, rather than waiting for a nurse to arrive.  I look forward- with some trepidation, but a lot of hope- to disembarking from this hulking catamaran in favor of lighter vessel as we push off behind Jack as he swims toward new horizons.

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Main Stream: First day of Kindergarten

Their father tackled the purchasing and packing of school supplies with all the care he has learned managing medical equipment.  Lunches have been carefully packed, the jar of formula and Duocal no less lovingly prepared than the neatly sliced peanut butter sandwich.  After five years, the boys are finally going to head off to school together.

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Sam, lying in a ball on the floor this morning, confessed that he felt nervous about attending kindergarten at a big school.  As Jack unhooked himself matter-of-factly from his AirVo and reached for a fresh HME, he told his brother not to worry, he’d help him learn how to go to a big school.  I’m with Sam on this one- I feel nervous, too.  I worry about the educational machine swallowing them whole.  I fear that Sam will be encouraged to be unremarkable.  I fear that Jack will be treated as someone who needs to be handled like glass.

For a long time, we fought for a specialized environment for Jack, and Delaware School for the Deaf was the perfect place for him.  At our first meeting last week with his new teachers, the educational diagnostician, and school nurse, we could feel the apprehension in this new cast of characters.  Jack and Sam’s bright, newly constructed  public school has an excellent reputation, but this team didn’t enter teaching because they were called to the challenges and delicate dance of managing special needs children.  Now the fight shifts and we are working to ensure that Jack is treated just like every other kid in the room (despite the nurse that will trundle along behind him like a shadow throughout his school days). It is an odd, off-balance feeling.

This morning, crouched down at the school threshold, I delivered them to their new world with the last fierce squeeze of early childhood- one arm around each little boy.  “Learn lots, have fun, be respectful.”  I straightened, now a lone figure on the sidewalk rather than the hulking, bunched shape of three that I had been for a time.  I watched their heads join the rivulets of black, brown, and blond crowns bobbing and weaving through the doors. Small, bright pebbles in the sand which runs through one’s fingers.  I was reminded of these lines, which I murmur like a prayer:

“Whatever he needs, he has or doesn’t have by now

whatever the world is going to do to him

it has started to do. With a pencil and two

Hardy Boys and a peanut butter sandwich and

grapes he is on his way, there is nothing

more we can do for him. Whatever is

stored in his heart, he can use, now.”

From: “The summer-camp bus pulls away from the curb”  by Sharon Olds

I’m so proud of these two.  They’ve both seen love in abundance, and rules and chores, too.  They both have been asked from the start to contribute to the good of the whole, whether that means foregoing the ice cream to avoid hospitalization, or whether that means getting dropped off at a friend’s house at short notice due to a sibling’s need to be seen urgently at the hospital.  These two have ridden roller coasters together- literal and figurative.  They’ve weathered storms and they bear the marks, some seen and some unseen.  Jack bears the “Survivor Signs” of his scars and differences.  Sam bears a certain unyielding suspicion that he might not be getting as much attention or resources as he deserves.  Both of these are the realities that they must carry.  They are young, but they are no different from everyone else, now- and yet they are so vitally, uniquely their own.

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Who will be the one who picks up these pebbles from the sand- so undifferentiated now within this strange, new, mainstream, and holds each of them up this way, that way, and marvels at the facets and tiny, rich worlds within each, polishing and coaxing them to brightness?

There is nothing more we can do for them except trust in them and believe in them.  They have each other.  And tucked away within each is all the strength and love that they will need.

Spring Break Stomach Bug

Well, Jack is down for the count with a nasty stomach virus.  It’s hard to know whether the cold he’s had for a few days set him off, or whether its simply a GI bug.  But he really is struggling.  We spent the day yesterday at home together and the poor kid couldn’t do much other than sit on the couch in a zone, holding a bucket while I tried to find the best way to hydrate him.  It’s tricky with a G-tube.  He usually eats 3x a day by taking a dose of 255mls of water over about 40 minutes.  I slowed it down to 100mls an hour of mostly pedialite, but he still couldn’t handle it and we were getting nervous  about dehydration.  By the end of the day, the doctors at AI had sent over a prescription for some anti-nausea medication, and Jack was finally able to keep down some tylenol to keep his fevers down.  Poor kid fell asleep at 4:30pm!

The whole day he kept asking me for small cups of water that he could drink.  (We give him about 1ml of water in the bottom of a shot glass.)  Jack doesn’t really take water by mouth, though he likes to wet his tongue with it, and he may get a little bit down.  He was so insistant about having water by mouth that I finally asked him why.  And he told me “when you’re sick, you need to drink lots of water so that it flushes the germs out of your body.”  Somebody had been listening to advice we had given to Sam on his last sick day, I think.  Though I told him that he needs to “drink” by taking his “belly food”, it didn’t really seem to cut it.

It’s hard to make the call to stay home when you know you have a nurse who has been scheduled to come and look after your kid.  And 70% of the time, Jack’s illnesses are short-lived fevers that don’t amount to anything, just  a result of the colonizations in his trach area-and we do keep him home with a nurse on those frequent occasions.  But I can say that the way Jack was looking yesterday and today was enough to convince me that this kiddo deserved to have a parent at home with him.  I’d like for Jack to have memories of being sick and looked after by his parents… not only when a hospitalization is involved.  And I’ll admit that I feel pretty gross outsourcing the care of my sick kid to a nurse even on days when he’s only a little bit ill.  But then, you’re cancelling your scheduled nurse, who then doesn’t get paid….  Sometimes it seems like a no-win.

I’ve just returned from a conference which gave me the opportunity to see the incredibly innovative work that my peers at other institutions are doing, and I confess that such experiences inevitably turn up the volume of the “never enough” refrain of the working mother that is always there, playing like a broken record in my head.  It’s a full, wonderful life, and I’m lucky to have work that I find challenging (and even fulfilling most of the time) and a spectacular family.  I hope someday to be able to say that there’s enough time and attention to go around.

But in the meantime, I’ll do my best to find some balance.

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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!

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.

 

July: Going With Your Gut

It was our first ever family vacation last week!  We packed the minivan full of gear (the vent, the AirVo, the food pump, boxes of formula, boxes of suction catheters, boxes of inhalation-grade water, oxygen, emergency supplies) and the usual family vacation items (little boy backpacks full of toys and coloring books, suitcases, water shoes and toothbrushes and sunscreen), and bounced up to Connecticut to see one family, then to NH to see the other.

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It was a needed break.  July has been a hard month.  We had to put our wonderful cat down after 13 years of friendship.  This was the boys’ first experience of death, and they are still processing it.  Jack especially has been asking where Buca is each morning around the time that we would have been giving him his medicine.  We also had to say another kind of goodbye.  Since Jack’s discharge, he’s been looked after during the day when not in school by a daycare facility which provides nursing care and therapy services.  These are the nurses who have risen early to get on an ambulance to ride to our house and deliver Jack back to the facility in time to catch the bus to DSD.  This is the team that spotted Jack’s emerging hydrocephalus symptoms when he needed a shunt revision.  This is the team who saw the onset of Jack’s seizure, kept him safe through it, and kept careful notes of its characteristics.  And this is the therapy team who worked tirelessly for Jack, pushing him and pushing us to work harder at getting him mobile, accessing language, learning to socialize.  This team has become like family.

Yet, in the last 5 months, most of the nursing staff there turned over quite suddenly.  We learned of at least one occasion in which a nurse who had formerly worked there full time stopped in to see him and found him asleep without his vent, an oxygen monitor or a nurse- a dangerous situation.  There were occasional mistakes- nothing serious, but then Jack’s behavior surrounding basic care began to change.  He expressed fear and distress whenever we needed to clean his trach or g-tube site.  It’s been an uphill battle to get Jack back to a level of comfort with basic care since then.

We decided to remove Jack from the facility this month.  It was a terribly difficult decision. It means that Jack is missing a month of therapy with an extraordinary team.  It means an abrupt goodbye to teachers and nurses who have always advocated for him, who truly love Jack as if he were their own.  And it means saying goodbye to Urgent Ambulance, an amazing team of people who have been bringing Jack to and from daycare for us each day.  These folks took time out of their own day to buy Jack a balloon on his birthday.  They play music, flash the lights for him… they do a lot to make him feel special.  Part of me will miss the daily rituals surrounding the comings and goings of the ambulance.  Knowing I have to hurry home to intercept the ambulance has kept me from working late most nights, and I’ll miss hearing Sam shout “The AAAM-Bu-LAAANCE!!” when that white shape pulls into the driveway.

I’ve listed quantifiable, objective reasons for our course of action here, which may lead you to think that this decision was entirely rational, measured, and clean.  What is harder to detail is the way that our feelings play into making such a decision.  According to the ubiquitous Meyers-Briggs Type Indicator, I score fairly high on the intuition scale.  When I was in high school, this classification seemed to affirm that I had some mysterious, little understood type of access to the world that others did not have- that my gut feelings were more likely to be right than others’.  (Maybe I was even a little psychic?)  Maybe the world contained mysterious forces, and I was one of the few who could interpret them (always correctly, of course).  Thankfully, 20 years of making mistakes has more than tempered this view.  Now I see this aspect of my mind quite like that teenaged daughter.  Full of promise and able to cut through a lot of nonsense with the occasional flash of insight… but also generally lacking impulse control and not to be trusted with the car keys.

I’ve been thinking a lot about when to “Go with your gut” when making a decision about education or care.  How should the ethereal feelings and inscrutable conclusions that form rapidly in the intuitive mind be allowed to influence decisions when you’re caring for someone who is medically complex?  When do you stop weighing the logical pros and cons and run with your intuition?

Sometimes, the information received from the intuitive mind is as obvious and incontrovertible as steam rising from a morning cup of tea- a knowing that is as fundamental and taken for granted as the laws of physics- just an overlooked piece of the picture.  Yet more often, I find that unpacking my own intuitive judgments is more like watching a wisp of cloud in a clear blue sky.  You can be aware of its presence, see the movement of the vapor, make a study of its tendrils curling in on themselves, you may even be able to define its edges. But determining its true size, its relevance, is impossible because your mind cannot perceive the depth of the sky.

How do you recognize the errors in intuitive judgments and refocus when incorrect?  I knew that the new staff at the daycare was making mistakes, and these mistakes were filed away in a log book of sorts in my mind, adding up over time to an unsavory picture.  Yet, my mind is not similarly keeping track of all the times that things went right, so a true accounting is not really possible.  Like the depth of the sky, we lack an understanding of our own minds, and this leads so often to poor “gut” conclusions.

In the end, however, Jack’s behavioral changes are ultimately what forced the decision, despite my uncertainty about whether “trusting my gut” was really the right course.  Jack just didn’t seem to get out of it what he once had.  This is the hidden strength of intuition.  It works poorly when trying to make a decision on something you know only a little about, like (for me) what nursing training standards should look like in a pediatric patient extended care (PPEC) center.  Yet, it works very well indeed in spheres in which you are an expert.  So, while you’ll never hear me utter the phrase “mother knows best” (because I don’t), I do spend an enormous amount of time with Jack and Sam.  I watch their faces as they react to the large and small aspects of their life, I observe their bodies in anger, at rest, at play.  At least right now I can say that I know my son pretty well, and I trust my gut when it tells me that he’s not okay.

My own rule of thumb for making a gut decision vs a solely logical one adheres pretty closely to this- do I know a lot about the subject I’m making a gut call on?  No?  Then I better do research and talk to some experts and mentors.  Do I know a great deal?  In that case, I should listen closely to my intuition.

IMG_20160801_090507958In August, a lot will have changed.  We’ll miss our furry companion, we’ll miss our old friends at daycare, and our friends on the ambulance.  But we’re looking forward to the exciting things that are ahead.  Jack will soon be picked up and dropped off by a school bus for his all-day program at Delaware School for the Deaf, which will solve our major transportation problems and meet our desire for Jack to have a rich social learning environment.  Medicaid picked up the cost of additional home care nursing hours, and Sam’s daycare, Learning Lane, didn’t hesitate when we asked if they could provide care for Jack during the day for the month of August, if a nurse is with him.  The boys’ first day at daycare together was today, and they did well.

PS:  If you are interested in reading about the strengths and limitations of the intuitive mind, I highly recommend reading Daniel Kahneman’s Thinking Fast and Slow.