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!






September- Logistics We Live With

I’d like to write about an aspect of our life that I have not written much about since Jack was in CORP over a year ago: what it takes to keep the household going while keeping Jack in the rich environments that he so desperately needs to thrive mentally, physically, and emotionally.


We could not keep ourselves going without the help of a large staff of nurses and case coordinators from our home nursing company, Bayada.  Nurses come to the house each night so that John and I can sleep.  They monitor Jack and his ventilator throughout the night, silencing alarms so that we can rest, and addressing his needs.  Some help us to keep our syringes and trachs sterilized, our equipment organized, and our meds up-to-date- things we usually do ourselves.  We used to have nursing on Saturdays and Sundays during the day.  Now, due to recent changes in Medicaid coverage, we have a single Sunday day shift per week.  This lets us take our eyes off of Jack long enough for John and I to get all the errands of the week under control.  It also facilitates our ability to get Jack out of the house on fun trips and outings.  Bayada nurses also take Jack to school at the Delaware School for the Deaf.

Nursing is absolutely essential to our lives and it dictates the ebb and flow of our days.  We turn in when the nurse arrives, and we must wake when the nurse’s shift is over.  When we experience call-outs and lack of coverage–which happens at least a few times per month– we are up all night and can barely function at work. Nursing makes our life possible.  It’s also one of the tougher things to get used to.


When we learned that Jack would have a trach and a g-tube, we never guessed that his transportation needs would be the most fraught aspect of our new life.  A certified caregiver must remain at Jack’s side when he is transported, ready to switch out a trach or provide emergency care, getting Jack to and from daycare, to and from school, and to and from his numerous doctor’s appointments.

Here’s what has to happen in order for Jack to go to daycare:  An ambulance picks a nurse up from Nurses N Kids at 6:30a.m. and travels to our house.  We give report, load Jack and his gear up, and Jack travels to NNK for the day.  Last fall, we found ourselves caught in the middle of a contractual disagreement between Nurses N Kids and the transportation company that they contract with.  The transportation company stopped sending a separate van to pick up Jack each morning.  We missed work due to late arrival times and early return trips home.  Jack was en route for well over an hour (which he does not tolerate well- he grows congested and has trouble keeping his O2 levels up). With a friend-of-a-friend’s help, we were able to appeal to the state Medicaid office to secure a separate contract for Jack that resulted in our current, ambulance-every-day arrangement.  Without reliable daily transportation for Jack, we would not be able to work full time.

When Jack’s needs grow, so too does complexity.  After a great experience with Delaware School for the Deaf last Spring, we secured funding for additional nursing coverage this summer to allow Jack to attend school 3 days a week.  Here’s what has to happen to transport Jack to school:

  • A Nurses N Kids nurse must arrive early to meet the ambulance
  • Ambulance goes to Nurses N Kids and retrieves an NNK nurse for the route
  • Jack is picked up at our house
  • Ambulance arrives back at NNK, the NNK nurse signs Jack over to a Bayada nurse, who draws his morning meds and boards the school bus to DSD with Jack.
  • The school bus takes Jack to school and back to NNK at the end of the school day at noon, where Jack is signed over to the NNK staff once again

In July, we had secured a letter of medical necessity and made the insurance request for extra nursing hours to make his additional school day possible.  What we did not account for, however, was that the school district would shift his school bus pickup times to 7:20….  our whole arrangement fell apart.  It took a week of phone calls to try (to no avail) to get a later bus pickup time for Jack, to shift our Bayada nurse’s schedule, ask NNK to send a nurse in by 6:00a.m. (and many of these nurses have significant commutes to work!) to register the change with the statewide agency that controls medical transportation, LogistiCare, as well as with our ambulance company, while figuring out lesser logistics such as how Jack’s meds will be administered with so little time for the trade-off between NNK nurses and Bayada.  Jack had his first week of school this week and sure enough… the zero margin of error that we are dealing with meant that when the ambulance was ten minutes late to NNK, Jack missed the bus. It’s a mess and I’m not sure how we’ll work it out.

Meds and Equipment

John and I have established a division of labor in which he inventories and orders our medical equipment supplies, and I calendar for and keep track of the 7 medications that Jack requires.  Some of the meds are compounded, meaning extra time must be allowed for refills. Some must be refrigerated.  Some last only ten days before expiring and must be mixed at home.  Some, like the new anti-seizure med, must be given at the same time to avoid the possibility of breakthrough seizures.  And one medication, Tobramycin, an inhaled antibiotic that Jack periodically needs to fight lung infections, could cost us over $10,000 per refill unless we tread very, very carefully with insurance.  I can’t begin to tell you here just how many phone calls have been made due to that one medication.

Because of safety regulations, Bayada and NNK nurses can’t administer pre-drawn medications, so I can’t just send Jack off with single doses ready to go.  This means we must make sure we have school bottles that are tracked and stored properly.

John checks the equipment such as our oxygen canisters, disposables such as Jack’s HMEs and suction catheters, schedules deliveries, and has worked out storage systems for all the supplies that work for us and for our nurses.  He watches the nurses’ notes meticulously for any supplies that must be sent in to daycare.  He also schedules the periodic visits from respiratory therapists who must check the functioning of Jack’s ventilators (he has two- one that travels with him everywhere he goes, and another that stays at the bedside).

Let me tell you, when you have to look at the clock and calculate how long it is until the next med, how flexible the timing is on that med, whether you need to pre-pack food and a food pump, whether Jack might fall asleep and require a ventilator, it makes it mighty hard to take a spontaneous drive, a trip to the park, or anything else even slightly spontaneous.

What it all means

I think you get the picture.  Even during the healthy, simple times, there’s a lot going on, and many balls in the air.  I was motivated to write this post NOT because I am fed up or angry or looking to vent (though I certainly get that way sometimes) but because we try very hard to stay positive– and I think that leads me to write in a way that doesn’t always give the appropriate nod to the costs of Jack’s progress.

Folks who know us are often shocked to learn that we have nurses in our home every day, having thought that this was something needed just in the acute period, when Jack was first brought home.  “When will all that end?” we often hear.

The answer to that question, of course, is not up to any of us to answer.  In a pulmonary visit last week, Dr. Chidekel was measured, logical and mostly optimistic.  As we move into respiratory season once again, our main goal must be to stay the course and keep Jack healthy.  Once next spring rolls around, when Jack turns 3 and is all the stronger (God willing) we can start talking about possibilities for weaning the vent support down.  Now, however, Jack needs the boost of good, vent-supported rest to keep his mind and body strong.  As long as Jack needs the vent, he will need the trach to facilitate its use.  Signs that he is growing stronger are good- he now tolerates and uncuffed trach most of the day and wears his speaking valve for 2-5 hour sprints.

But what about the swallowing?

Jack’s eStim sessions have not changed the fact that he is aspirating- we can see food come out of his trach– we know he is not swallowing.  Because he yearns to eat food with us at meals, we have begun to explain to him and to Sam that we love Jack but can’t give him food because it is dangerous to him.  We explain that it is because he cannot swallow, and that maybe someday, (maybe) if he works very hard with his therapists, maybe he can learn.  It’s hard to tell a two-year-old who is crying with the deep, sincere tears of one who knows perfectly well that it’s not fair that no, it isn’t fair but it is just the way it is.  Dr. Chidekel seems to put his hope in Jack’s mind- that Jack is smart, motivated, and willful, and that this combination may help him to overcome the swallowing difficulty in time.

I cannot say that I understand how this will ever happen– swallowing is something that you can do consciously, of course, but it must also happen unconsciously.  And I cannot say that i understand how a child that cannot swallow will ever be free of a trach.  And as long as Jack has a trach, all the logistics that I have outlined today will remain, as far as I am able to see.  But we are a hopeful bunch.


August- Working on vocalizing!

It was a beautiful night here in Delaware and I was able to capture some great video of Jack in a chatty mood.  He’s come a long way and clearly understands vocal speech.  In this video, you can clearly hear him say hi, bye-bye and froggie.  It’s also pretty clear that he has a lot of learning ahead.  However, with his combination of sign and sounds, he’s improving his ability to communicate every day.

Summer 2015 Ups and Downs

It’s been several eventful weeks for the boys since the last update.

Jack continues to work on his spoken and signed language.  He’s recently picked up the sign for “sunshine”, “chicken,” “song/sing” and “again”.   He is learning his signed alphabet and can very clearly make the hand-shapes for A, D, E, K, L, O, S, T, V, and W.  He’s also using his spoken voice a bit more intentionally these days.  He can now say (though it is not very intelligible) “ball”, “bye bye”, “hi”, “daddy”, and “boy”.

He had the opportunity to attend summer school for about six weeks in June/July, which just wrapped up this week.  He just loves school- loves his teachers and friends, and especially the many opportunities for constructive play.  Here are a few pictures that one of the nurses who accompanies him at school took for us, to document this wonderfully rich environment.

Heading off to school on the bus, like a big boy:


The sunny courtyard, complete with bubbles, water play, and a vegetable garden that the kids can tend:


Jack at song time, with his “twinkle twinkle little star” prop:


We are so sad to say goodbye to school for a little while, until classes resume on September 8th.  During the hiatus, John and I are working on getting nursing coverage for an additional school day covered by Medicaid.  I truly hope it will work out!

Sadly, Jack missed some school recently due to another hospitalization.  Thankfully, this one was not nearly as dramatic as previous, recent hospitalizations, with no emergency surgeries required… though it did start with our first, panicky midnight ambulance ride.  Our night nurse called us out of sleep concerned that Jack was having another seizure.  We grabbed a phone and recorded the event so that a neurologist could see it.  Jack was trembling hard, but I noticed very pronounced goosebumps, and he was responsive to us, so I wasn’t sure he was seizing.  We didn’t want to chance it, so we rushed via ambulance to the emergency room.  As soon as Jack got to the ER, a 103-degree fever spiked up, and an abnormal chest x-ray showed us the cause of the fevers- a minor pneumonia.


IMG_1895Though it was minor, 103-degree fevers sure are awful, and Jack was pretty sick there for a few days.  He spent about three days recovering with lots of TLC from some of his old friends from his rehab phase.  Lots of his new signs emerged during this period, while he didn’t have much else to do but practice.  We also discovered a good way to beat the terror of a hospital stay… get a stuffed animal, and make it suffer through all the same procedures that the patient must suffer.  Inhalers, stethoscopes, blood pressure readings, probes… any time someone came in to tend to Jack, we tended to his doggie immediately thereafter.  A good strategy, I’d say!  (At least it kept us busy.)

We’ve been out of the hospital now a little less than a week, and Jack is doing well. His current favorite activity is trying to hop, which he can’t do, as one side is much weaker and less coordinated than the other.  So instead of hopping, he tends to look like superman going from a crouch to tip-toes- just barely lifting one foot off the ground to take off into the sky, one fist raised up high.  We love it.  It’s just such a Jack pose.

Sam is always at risk for missing out on lots of things because of the logistics that surround his brother’s care.  So, this summer, I wanted to make a commitment to getting him on at least one trip to New Hampshire, where my parents have now moved.  I spent weeks dreading a 9-hour journey with a toddler.  But my little blond trooper did not disappoint!  Here he is at the rest area enjoying a treat for his amazing behavior during the first leg of the journey.

IMG_1903We talked a lot about cars, diggers, trucks and big bridges during the drive, and we sang many hours of Sesame Street songs.  He napped a little bit, but only really fussed during the last 15 minutes of the trip.  It was great.

Once there, Sam got to go in a canoe, swim in a lake, eat chocolate cake, and just enjoy himself.  He was able to have a long visit with my grandparents as well as with my folks.  He’s still talking about the trip, and it’s easy to see why!

Here’s Sam on his first day of the trip, just after scaling a pretty intimidating “mountain” for a little guy:


And here’s Sam enjoying the lake.  I especially love this picture as it gives a sense of what the world must look like to a two-year-old.  A forest of big people!

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Fall promises to be very busy for me at work, so I’m hopeful that the eventful spring and summer that we’ve had will mellow into a pretty peaceful fall.  We’ll see!

Communication Breakthroughs!

I’m happy to have some good news to share.  Jack is working with a speaking valve at last.  I know everyone is eager to know just what it was like to hear his voice for the first time since he was a baby.

I invite you to share this moment with us!  This video was taken halfway through his first valve trial at daycare with his speech therapist:

Generally, it takes trached children a while to get used to a speaking valve.  It feels strange to them to have to force air up through the upper airway, past the vocal cords, to exhale.  Their mouths and noses have been relatively unused for months, sometimes years.  So, it was a great surprise to me when Jack acted as if nothing was different when we first put the valve on.  We’d expected to try to get a five minute trial in.  Instead, Jack kept it on – with perfect O2 levels – for 45 minutes!  His speech therapists and nurses were thrilled.

Jack’s voice sounded rusty at first, but here’s what he sounded like just 24 hours later:

Now, two weeks after we started, Jack is able to tolerate around 4 hours at a time on his valve, and is beginning to try to make some verbal-ish babble sounds.  He says “Daddy” by making the corresponding vowel noises;  “Ah-ee!”  He’s got a long, long way to go, but I think it’s clear that he understands the concept of speech, and understands that he may be able to obtain it himself.

There is another form of communication that Jack is beginning to really own, also, and that is ASL!  He recently started morning preschool at Delaware School for the Deaf (“DSD”), two mornings a week.  It took us about 2.5 months to get nursing, transportation, and (most importantly) the Medicaid funding necessary to make this happen.  But we are SO, SO glad that it worked out in the end.  Nurses N Kids is a great facility, and the therapies that Jack receives there are top-notch.  However, it’s not an educational facility, and there aren’t many peers who have similar abilities to Jack in his room at the day care.  We felt it was important to find Jack a rich learning environment with other children, and DSD has more than filled that role.  The classroom is beautiful, the spoken language teachers are amazing and the deaf teachers / ASL language models are so kind, and so patient (with me as well as my boy), that it’s no surprise that Jack came home with his communication book that the teachers put together, pointed out his language model and showed me how to sign his name!

I hope to write a full entry all about Jack’s experiences at DSD soon.

However, this entry wouldn’t be complete if I didn’t let everyone know that Sam, also, is making some major breakthroughs.  Yesterday, he was eating an English muffin pizza for dinner (a favorite), when Jack walked up to his high chair and peeked over the top, trying to get his attention.  Sam looked down and very clearly said “No, Jack- I’m eating pizza!” All of a sudden- out of nowhere- these sentences keep pouring out:  “Put the lid on it.” “I wanna hold it.” “Jack Jack is under the table.”  Also, he seems to have learned his alphabet and can count to eleven:

(For those who find Toddlerish a bit hard to understand, the video picks up with Sam reciting the alphabet at about letter G.  After I ask him to start again, he gets to about letter V and then looks out the window and says “Jack Ambulance!” since the ambulance was at that point pulling into the driveway to bring Jack home.  He then counts up to eleven with a little prompting from Mom.)

Saying that I’m proud of Sam would be pretty much the understatement of the year.  This little dude is curious, empathetic, and willful as all get-out.  He’s also excited about Jack’s voice, and he often comments on it.  Because we make a big deal out of Jack’s valve whenever it goes on, Sam complains that he wants one too.  We try to explain that Sam doesn’t need one because he already can use his voice, but Sam seems puzzled by all of this.  I think we finally made a little breakthrough today.  We told him that Jack needs the valve so that he can use his voice, but that Sam can always use his voice- which is in his neck.  I hummed while Sam held his hand on my throat to feel the vibration, and then he did the same on himself.  I have no idea what does and doesn’t compute for a two-year-old, but he seemed satisfied.

There is much more to share, but time is short. I’ll be sure to update soon with more information about Jack’s school and recent doctor visits.  As always, thanks for sharing the road with us.

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.