It’s 1 a.m….do you know where your sleep is?

I remember (vaguely) when sleep came easily and I could embrace it passionately.  In my youth, and I suspect this is true for just about everyone, I could plop down on my bed and (with very little to trouble my mind in those halcyon days of homework being the biggest concern) sleep would rush to me like a lover who had met me in the middle of a meadow covered in flowers…cue the soaring romantic theme music, and together we would tumble into a fade-out.

These days I am frequently, cruelly stood up by sleep.  I am dressed (or undressed) and ready to go, and sleep decides to not show up.  Some nights are better than others, but -mostly- sleep meets everyone else in the house, and teases me from a distance.  Dada, book in hand, is off to dreamland before he has read so much as a whole sentence.  J, bless him, can easily segue into slumber…the whirring of his fan is all that I can hear through his baby monitor.

I breathe deeply.  I relax.  I cleanse my mind of all concerns and worries, all distractions. If I have been reading and I feel like I’m about to conk out, I put my book aside and get ready to surrender.  If I feel like releasing the weight of my body into the covers, the pillows, the warm body next to mine, I do it with gusto.

An hour later I will be sitting in bed, wide awake and anxious.  Either pain wakes me up (pick a body part…this chronic pain crap that no medical professional will give a name to is so random a drinking game wouldn’t work for it,) or I am sitting in bed thinking it’s a heart attack (it never is,) or a stroke (nope, not that either,) and wondering if I should scribble a note to Dada…”I went peacefull….agh!”

Once the anxiety, palpitations, aches, tingling, confusion abate, I settle back in…breathing deeply (never did I use Lamaze for childbirth…now I alternate between that -except for the pushing- and yoga breathing,) I nestle back into my spot…letting go…letting go…letting…

An hour later, bolt upright in bed…

I wonder if I should amend the note: “The previous one was a false alarm…alas, this time…it isn’t.  I didn’t go as peacefully as I wanted…agh!”

I have pondered what wakes me up.  Aside from my body having a ridiculously mean sense of humor, the only thought that crosses my mind is that my mother’s choice of a name couldn’t be more apropos: Dolores (after Our Lady of Sorrows, but also Aches, Pains…)

Why don’t I wake Dada up?  Well, for one: I know I’m not necessarily dying.  As my dad, may he rest in peace, used to say “we ALL are dying.”  Every breath is one less.  If I made a habit of waking Dada up every time I wake up suddenly in the middle of the night, I would soon turn into The Middle-Aged Woman Who Cried “AGH!!!”

This morning I actually didn’t get up for coffee with Dada.  It is a running joke in this household that Dada pulls his best Carl Fredricksen (from Up) sitting alone in the kitchen, looking forlorn and sad, until I emerge from bed to have coffee with him.  I refer to it as “the residue of our Jewish ancestry guilting me to get up because I hate the idea of you missing me, and I can totally picture you old as dirt doing this because I’M DEAD!”  This is part of the grumbling that precedes me as I walk down the stairs every morning.  The grumbling has been preceded by protestations regarding the need to have me present when coffee is consumed.  Why, I snarl as I climb out of bed, must I be awakened by kisses and mussing of the hair while sweetly(and insistently) whispering “your coffee is ready” when it’s not even six-thirty in the morning and I have absolutely nowhere to go…snarl, grunt, growl, grumble, roar, hiss…and then caffeine enters my body and I am glad to be sitting there in the half-light holding hands with my husband.

But this morning, no, I couldn’t.  Last night the sitting-bolt-upright involved thinking “shit…if something happens in the middle of the night, and we call 9-1-1…what happens to J???  Who will sit with him?  Who will soothe him while one of us is being seen to by medical professionals?”  Going back to sleep was not possible.  I kept sitting up with the same torrent of worries streaming through my mind: TGG works an hour away, and cannot leave his patients to come see to his brother; we have no family nearby other than TGG; we are as friendless as friendless can be.

When Dada came to gently jostle me out of bed I said “I just can’t…I can’t…”  At 7:10 I woke up alarmed by the quiet.  We’ve reached the age when we call out MARCO!  waiting for the POLO! to let us know the other person is fine if the house grows too quiet.  I thought he was downstairs, and it was past his time to get ready…so I leapt out of bed, alarmed, and found him getting ready to shave already.

You build this life, see, and suddenly realize that you’ve built it all wrong, I guess.  No.  Wait.  Our life is fine.  Our method is faulty.  Circumstances have sort of forced us, and we haven’t really fought it because we are the way the are.  That makes more sense, and we are accepting blame.

Every day our lives revolve around each other, and around J.  We are not sociable people; we enjoy the introversion that is natural to each of us (although, with each other, we are outright extroverts who can’t seem to shut up or stop laughing around each other,) and we accept the isolation that is built into J’s placement in the Spectrum.  People, for the most part, are awkward about interacting with him, and about understanding us.  There isn’t really a full grasping of what this means, and not everyone is cut out to handle it gracefully.  Not even TGG could after a while.  People don’t fully understand that, even if we wanted to, we can’t interact and socialize in the way that society finds optimal.  If people come here, J will be here.  If we go to people, J will either come with us, or will be left with a caregiver (ours is a little MIA right now…she hasn’t called, and we had given her some space thinking “midterms,” but figured that’s long gone…J hasn’t asked for her either.  We don’t know if they had some sort of disagreement, or if he’s just not feeling the company vibe lately) who might have need of us suddenly.

Dada said, when I told him how I was feeling, that he thinks about that, too, and that his take on it is that, whether we are inclined to or not, we might have to make friends.  I was crying when I said “we can’t move to where we don’t know anyone,” and he said “well, it’s not like we can stay here either…”

Tonight, for my sake and everyone else’s, I’ll take my valerian.  It might help.  Sometimes it does.  That, however, won’t change the fact that, as we ran down a list of people we could call in the middle of the night, we couldn’t find one single person who would a) respond quickly, b) know what to do with J, c) J would want to wake up to find here, or d) we would feel comfortable leaving with J.

J spent the better part of the morning looking at his bleary-eyed mother and asking if I was happy.  I told him I’m happy, but tired…he wasn’t convinced…that kid is too perceptive…




The not-so-long road to recovery…

Be ready for a long weekend, they said.  It’ll be rough, they said.  He will be a handful, they said.

We were ready for every eventuality.  Pain, discomfort, crankiness, bad mood, anger, SIB, dissatisfaction with the status quo and the meals it involved…

First let me say that the surgeon kicks ass.  I would show you the shape and size of those molars, but I honestly don’t want to put anyone through that sight.  Think the size of a big  wasabi bean, and the roots shaped like a jester’s hat.  They are heavy.  They are solid.  They are, I must admit, a wonder of nature.  That the surgeon only had to cut into one of them to get it out is a miracle.  It hurts just to look at them.

J was pretty relaxed when we got home.  Little by little the numbness wore off, but he never really complained.  We could tell he was very much aware of the work that had been done, and we gave him medicine accordingly.  We applied ice packs.  We got him to sit and chill out.  We fed him soft things that went down with a minimum of effort.  He was happy…

We figured he’d get up feeling it a lot more on Saturday.  On Friday night he reorganized his weekly schedule and, in what we thought was a moment of heroism, put up Barnes and Noble, Target, Kroger on the board.  He even put a cinnamon roll on there for good measure.  As we crawled into bed (an exercise in futility because I didn’t sleep a wink waiting for the wailing, screaming, complaining cries emanating from the baby monitor,) we looked at each other and said “you watch…he’ll be in his jammies and cuddled up ALL DAY tomorrow.”

He was up at six a.m. after having slept through the night.  I dashed out of the room (in a daze, of course, because I had not slept…and THAT was an exercise in futility,) and all I found was J sitting on the toilet as he usually is at that hour, and the first thing he said was “COFFEE????”  He wanted US to get up…I told him I was going back to bed.

At ten a.m., after having a rather bland breakfast, he asked to go to all the places he had put on his schedule.  The only thing he didn’t want was the cinnamon roll, but the rest of the excursion was as he planned it…we came home with more Ella Fitzgerald, Louis Armstrong, and other CDs I cannot remember right now.  He was happy.  He came home, ate his soup (with mashed vegetables and mashed noodles,) changed into his pajamas, and chilled out the rest of the day.

For dinner he had gnocchi in a creamy sauce with very finely shredded pork and minutely chopped spinach and mushrooms.

Sunday morning he had very soft sweet potato pancakes, silky scrambled eggs, and -at his insistence- bacon.

The only thing ailing him is a blister on his lip.  He is, as men will, playing up his convalescence to the hilt so he doesn’t have to do chores, but all I have to mention is going back to pudding for his meals…this makes him realize that he’s recovering nicely.

Today he insisted on running with the Wii.  Because, as we know, he will only get a hot dog from Five Guys if he runs with the Wii…  That is HIS logic, not mine.

So the surgeon is a bad-ass.  He did a beautiful job.  The one time we gave J the Lortab with acetaminophen he sounded, very briefly, like both Seth Rogen and James Franco in Pineapple Express.  It didn’t make him sleepy.  It didn’t make him dizzy.  It didn’t do anything other than give him the giggles for ten minutes.

I will not claim that he has been happy and his usual self all this time, but last night we finally heard a spontaneous giggle.  It involved the food on his plate.  He was happy about beef stew and white rice.  I understand why.  It was good beef stew.

So we are as close to normal J as we were on Thursday.  His mood is good; he is healing nicely.  He has forgiven us for the indignities he had to endure in the OR (he WAS the only nude person…hopefully.)

Now we move forward to whatever thing comes next.  Pizza is on his mind.  So are nachos. The crunchy stuff can wait until next week.

Hello, medication…my old friend…

There was a moment of recognition that passed between the spoon, the pixie stix dust, the pill and J.  Like people who haven’t seen each other in a while, some sort of change has ensued, and they meet up randomly in a familiar landscape, hesitation and then enthusiastic welcome happened.

J had heard the word “medication” floating around the doctor’s office the previous afternoon, but -as it happens with other things people mention- it isn’t real until it materializes.  There it was right in front of his eyes: small, a pinkish adobe color, circular and resting on a pillow of blue pixie stix dust.

It didn’t make him sleepy, but it obviously relaxed him.  I don’t know if it was so much the  chemical effect as the familiar routine of something that, he knew and we knew, somehow regulated the “noise” that overwhelms him.  This didn’t stop him from hitting himself during his shower.  That will take a while to go away, of course.  No one here thinks that the pill is the magic solution, or that -like the magic beans in the good ol’ beanstalk fairy tale- it will work overnight.  What was encouraging was the realization that J knows this is meant to do something that he’s been having trouble doing by himself…

He slept better last night than he had in days.  This morning he was happier when he woke up, and stayed in his room relaxing for a while.  His little fairy lights, his fans going full tilt, and him curled up in bed smiling at me as I went in to tell him to get his butt in gear.  The tense muscles, the face locked in a frown, the jaw that looked like a coat hanger were gone…

Yes, he hit himself when I swapped out his bandaids, but what started out as hitting slowly transformed into gentle tapping between one and the next layer of bandaids.

Something of the edge, the sharp and jagged edge of discontent, seems to be ground down.  I don’t think the problem has been solved, or that it has gone away, but some of the veils that are making the view unfocused are starting to sway in a light breeze that may eventually lift them enough to let us all see what’s on the other side.

That’s all we need.  We don’t need a silver bullet; we need a machete to clear a path so we can get to what needs to be done to help J.  Like the Tin Man, the Cowardly Lion and the Scarecrow, we have it in us, but we can’t see it YET.

Today, tomorrow and Friday I intend to play by ear the days and nights of life in this household.  I know there are things that I need to figure out before I figure out others…because this goes in layers.

So that’s what there is for now.

Time, tide and the common cold wait for no man…

There is, quite early in the year, a chill in the air.  We are definitely in season-changing mode.  On Saturday we dropped from 82 to 63 degrees in a matter of two hours, and this morning we were engulfed in fog and our handy-dandy we-keep-it-by-the-door thermometer indicated it was 54 degrees out there…

And J is home with a cold.

At the first hint of sniffling, my heart froze.  You know I’m not a coward, but a sniffle means a possible alteration of the beloved, calming, peace-maintaining routine, and -having had a holiday LAST Monday, and having a visit to the psychiatrist scheduled TODAY- keeping J at home is not something I was looking forward to at all.

When I informed him, after checking his temperature, listening to his congestion, and looking at the hang-dog expression that accompanies any shred of illness J might experience, that he’d be staying home today, J complained quite vocally, slapped his hands several times, assumed the “woe is me” position on the couch, and requested (in his best Richard Dreyfuss imitation) that I clean his nose.

After his Sunday-night reading of Ferdinand the Bull, he curled up in bed and turned off his lights.  No sooner had we done the same that he was standing on our doorway announcing COFFEE!!!!  I told him to turn on his heels and go to sleep.  No sooner had I turned over and found a semi-comfortable position for my neck that, once more, he came rapping on our chamber door.  Donning my robe and dragging myself, I returned him to his room, deposited him in his bed, tucked him in, and told him we didn’t want to see him until morning.

And then, of course, the same individual who requires a massive dose of persuading, cajoling, insisting, nagging and clapping of the hands to remove his fanny from bed on a school day, was up and at ’em at four a.m.  I could hear the distant rumbling of J trying to figure out when was a good time to wake us up.  He had the decency to wait until 4:30, and 4:45, and 5:00, and at 5:14 I cut him at the pass, announced he should go downstairs, and noticed his bed was neatly made, and his movies and iPad were ready to go in the red basket he uses to transfer his belongings from his night-room to his day-room, and viceversa.

The day, of course, was in full-swing once J hit the common areas of the house, and any attempts made to -surreptitiously, of course- return to bed for a brief respite were foiled by our very own version of Julie the Cruise Director from The Love Boat.  As my feet touched the carpet beside my bed (for the tenth time in a thirty-minute period) I was ready to deliver a Tony-winning performance of Miss Hannigan’s Little Girls from Annie.  Alas, when J is up and about on a day when he SHOULD be in school but will NOT be, it is impossible to break into song except under the most auspicious of circumstances, and the revitalizing qualities of coffee (the root of the whole “we’re up too early” debacle) are needed pronto…

At nearly eleven a.m. we are settled and content.  J has acknowledged that he has a cold, and that his nose is bothering him, and that he’s tired.  I haven’t yet told him that we are going to the psychiatrist this afternoon, but I’m sure once he sees WHO he’s going to meet with he’ll be fine.  This is the doctor’s office where there are no needles, no tweezers, nothing that pinches…  If his congestion doesn’t improve, well, then we’ll go to the unpleasant place where they’ll take a swab and determine if he needs stronger meds, but for the time being I am not expecting much resistance.

The change in weather, as you might expect if you’ve been previously acquainted with J’s super-power, has been predicted by the gradual appearance of Christmas music, Christmas movies, and snow-themed pictures that randomly pop up on J’s coffee table.  The other day, as we walked home from school in the blistering heat, I said “wow, J!  It’s HOT!,” and my son laughed.  I thought it had been the way I’d delivered this line, or the fact that I was sweating profusely thanks to the combination of mourning colors and the hot sun, but it seems like he was laughing because he KNEW it wouldn’t last.

Ah, mourning clothes…I forgot to mention that.  Yeah, you read right…I -like the aunts who raised me- dress in mourning according to the pre-established rules they (and I) were raised with; in a nutshell, I look like Wednesday Addams but with shorter, grayer hair.  OK, it’s not THAT severe, but it’s mourning, and no one (aside from my husband and children) notices that I’ve been dressing in black for a few weeks.  I am sweating quite a bit out there, and I can hear my aunts saying “do you now understand why we’d say please, God, let so-and-so last until the weather cools?  If it’s Your will?”  Yeah, I understand, and I also understand -because they raised me right- that comfort, fashion and recognition have very little to do with this process.  Mourning, while expressed outwardly in clothing, takes place deep within…I don’t know how well I’d deal with wearing colorful clothing at this time.

The house is not weighed-down by sadness, but there’s a ribbon of it threading through our days.  We acknowledge it, and we move forward with it because sadness and loss are a part of life that our children (not quite children anymore, right) need to learn to accept.  How well J acknowledges, accepts, understands and identifies this feeling of loss is questionable, but he has learned to adjust to the more muted aspects that have suddenly entered our everyday existence as a family.  We do our best to make it easy for him, not because he isn’t deserving of the full-blown effect of emotion, but because we know he doesn’t process grief like a neuro-typical person does.  The database in his mind has a picture of Dada’s father, but it is among many others, and we can’t expect him to react as we are reacting, but we know he’s good for a hug, a quiet sitting side-by-side…  Of all the situations we’ve tried to prepare for, in terms of “how to handle this with J,” the death of a parent hadn’t really, exactly, precisely crossed our minds…

The absence of overwhelming tantrums is very helpful…indeed.  And, at least, the kid knows how to make coffee.

The dreaded 2 a.m. phone call…

Yesterday afternoon, after being challenged by my cousin and a dear friend, I dumped a bucket of ice and water over myself for the ALS Ice Bucket Challenge.  My maternal grandmother, you see, succumbed to ALS when I was thirteen; her diagnosis, decline and death happened in the time it took for me to turn thirteen and being a month shy of turning fourteen.  The pall her illness cast over our lives was significant; those of us who had not heard of ALS before then suddenly got an education on the subject.  Dumping a bucket of ice and water over my head was uncomfortable, but it was nothing compared to what my grandmother faced in her final months.

Around the time that I was serving dinner, a sudden feeling of dread overwhelmed me.  If I tell you that I felt tremendously tired, weak and achy, you’d probably say “ah, the cold water!”  No, this was something else…  Because our family has been under the strain of ailing relatives with varying degrees of severity attached to their conditions, a feeling of dread has become par the course for us.  I ate dinner while thinking that I was being a tad melodramatic, and then I gave myself an earlier-than-usual bedtime to basically sit and relax…

We tossed and turned all night.  We were exhausted, but still we couldn’t manage to sleep and rest.  And then the phone rang…

My father in-law passed away in the small hours of the morning.  Even though we’d been expecting the news, it wasn’t easy to hear.  Yes, there is a degree of relief in knowing whatever physical suffering the loved one has been experiencing is done, but…

In the car, driving to buy a take-out dinner we didn’t want but felt compelled to eat because the next few weeks will be long and we need our strength, Dada and I were talking about the intricacies of the process of grieving.  I lost my beloved aunt 23 years ago, and Dada lost him mom sixteen years ago.  Although my parents are still alive, I do have an inkling of the grief that comes with losing a parent because my aunt was a mother to me.  Our conversation in the car turned on the many ways in which one feels totally gypped when a loved one dies.  There are many ways in which this can happen…

Waking up to a ringing phone with bad news on the other side is not fun.  It’s hard to go back to sleep after that, or -if you do- you will fall asleep when it’s about five minutes before the alarm goes off.  I don’t know if this is a law of Physics, or of any other science, but it should be.

We went through the motions of “morning” with the tiredness of sorrow, and we managed to successfully send J off to school without causing him any major anxiety.  School started on Monday and, because J decided so, our morning routine was trimmed down to getting dressed and getting out the door.  The same kid who used to relish our “I love your nose…I love your eye…I love your cheek…I love your ear…I love your other eye…” and so forth routine actually went from what usually preceded it to what usually followed it without stopping in the middle.  Although I loved the whole routine, and the giggles that it extracted from J, as well as the bone-crushing hug with which he said “I love you” when it was over, I accepted this as yet another passage in the mother/son relationship.

Ok, I pouted for a while, and maybe my eyes got misty, but I understand that we’ve moved on from another childhood ritual that J had no everyday need for anymore. As with everything in life, time gets called on habits, routines, even people’s lives, and we move on in spite of our sadness and apprehension.

Louis C.K. says “People are always asking what happens after you die. Lots of things happen after you die—they just don’t involve you. There’s a Super Bowl every year…A dog catching a frisbee …”  Death directly affects one person, and then it stops; once you’re dead, of course, your suffering, tribulations, happiness, sorrow, illnesses, tics, quirks, and so on and so forth, disappear…they’re done…they’re over.  This is not about whether there is a Heaven or not…it’s simply a statement of fact: all the worries of the world will fall off once your time as a living, breathing human is completed.

The rest of us, however, are left flailing like fish out of water.  When someone is taken out of our life permanently, we don’t exactly know how to breathe until we figure out how to function again.  It is not that we are left without a clue as to how to live, but rather that we are suddenly painfully, suddenly, shockingly aware that that person is gone, and that we are solely responsible for keeping them “alive” by hook or crook.  As we sat in traffic, Dada and I started enumerating the many ways in which we remember our respective mothers (his biological, mine blessedly voluntary.)  We both agreed that there is, even after such a long time, a gasp that comes attached to the oft-renewed realization that they are physically gone, and that we will never see them again except in the ways in which we can conjure them up through memory.  The most  heartbreaking expression I heard last night, when the lights were out and rain fell rather insistently on our balcony, was my husband’s voice laced with sorrow as he said “my parents are gone.”

There are things you cannot get back, and there are things that you will never lose unless your memory suffer a catastrophic failure.  I have learned, however, that in the throes of dementia there is, clear in my mother’s otherwise completely confused mind, the very keen presence of her long-dead mother.  The children, well, we’ve been watered down, reviewed to fit the picture she would have preferred, but her mother is there, intact and still vividly present.

The dreaded 2 a.m. phone calls throw US into chaos.  And, sadly, life IS about the endless possibility of getting one of those at any random time.  The more the call crushes you, the more you know the person it’s about was worth the pain, and -trust me- last night was heart wrenching on so many levels that the rest of our lives will be affected by that trilling sound in the middle of the night…

From bad to worse to middling to meh…

In Dada’s own words: “I thought 2013 had some pretty nasty qualities to it, but 2014 is kicking its ass…”

Once more we are reduced to three inhabitants for a short period of time, and J didn’t really let it sink in until dinnertime last night.  During the day on a Sunday, the argument can be made that Dada is getting some work done at the office, or that he and TGG went somewhere together.  By dinnertime (a sacrosanct time around these parts,) it’s obvious that one of us is gone from the table, and that’s that…  Even if TGG is not having dinner with us because he’s out on a date, with his friends, working, or whatever, there is a plate left out.  Last night the chicken parmesan was distributed among three plates, and three plates only.  It was seven P.M.

J started roll call right then and there.

He didn’t really stop calling roll until we finished our reading of Where The Wild Things Are.  It was 10:30 P.M.

During those three-and-a-half hours, we looked at the PECS board (where Dada’s smiling face is neatly laminated and firmly velcro-ed to Friday,) at the map (showing where we are and where HE is,) and at the Proloquo2Go.

This morning went better.  We looked at the board again, I reminded him that it is Monday, and then he counted the days between today and Dada’s face.  I admit I am missing Dada a much as J, and sleep has pretty much eluded me since last Saturday so this disruption in our usual general family routine isn’t helping.  Dada flies in on Thursday, but the drive from the airport will take long enough that J should be asleep when he arrives.  To stave off the anxiety of waiting for him on Thursday, I’ve made the executive decision of putting Dada’s PECS at the bottom of the board on Friday…

The phone continues to ring throughout the day with updates, questions, reminders…  I only truly jump if it’s after 11 P.M. or before 5 a.m.; calls during the day have become par for the course, but I won’t go so far as to say that I will miss them when they stop.  The new normal includes a constant ringing outside, as well as inside, my ears.

I grew up in the days when Caller ID was a pipe dream.  Answering machines were non-existent.  Call waiting?  HA!  If no one was home when someone called, the phone rang and rang, and they had to call again.  If you weren’t home and someone was there, you relied on checking the space next to the telephone to see if there were messages jotted down for you.  If someone called and you were on the line, they got a busy signal.  If you were out and about, and you needed to make a call, you had to dig for change and use a pay phone.  Now people look at you funny if you don’t have a cell phone, if you don’t have your voice mail set up, if you didn’t already KNOW it was them because you don’t have caller ID, or if they get a busy signal because you don’t have Call Waiting.

On Tuesday Dada and I had to rush to the store to get a cheap pay-as-you-go cell phone because our old pay-as-you-go cell phone has become obsolete enough that I couldn’t manage to get it to work with any pay-as-you-go company.  Of course, the frantic pace of travel preparations didn’t help.  We have had so many things going lately that I’ve determined some battles are just not worth fighting.  Before I resorted to losing my cool over an old cell phone, I decided to be mature and just go get another one…

TGG took ownership of activating and loading that phone, putting all the contact numbers and what not in there.  I had taken ownership of renting cars and such, and THAT went horribly awry through no fault of my own.  It seems that the more connected, and the simpler things are made by doing them online, the more glitches and unexpected mishaps come to pass.  Yesterday morning, bleary eyed and sleep deprived, I had to call TWO airport shuttle companies in quick succession.  The first botched my request to the point where they charged me for a ride from the wrong airport (oops!  We don’t have availability from the one you requested…so-rry!!!!!) and will refund the money in three to seven business days, and the second one solved my problem for half the price in half the time prompting a deluge of gratitude that might have included angels singing in heaven, happy tears, and a wish for eternal happiness and the big prize in the lottery.

Looking back, I don’t know how my family managed to travel when I was younger.  Granted, it was not Pterodactyl Air, but it can’t have been easy to make all the arrangements necessary for hotels, visas, passports, plane tickets in the days of “we have to do this by phone.”  I used to love going to the travel agency, looking at the posters, having the plastic pouch handed over with plane tickets and such…  I remember the hassle of going to the bank to acquire traveler’s cheques…  I remember how important it all seemed, and how they’d give us pillows, magazines, playing cards, and so forth…  I remember that you got a meal, or a nice snack during shorter flights.  It was all so sophisticated, and it involved a bit of a promise of leisure, of suspended disbelief and the real world far, far away.

Travel these days is the complete opposite.  Your phone can ring right up until they tell you to put in Airplane Mode, and you’re getting absolutely nothing (not even leg room) from the airline.  Your plane tickets are printed at home; you get confirmation e-mails for everything, and no one looks like they might relax at any point during the flight, or when they arrive at their destination.

Yes, we miss Dada and we can’t wait ’til he’s home.  Yes, we are stressed out and anxious under the shiny layer of routine we are firmly adhered to, and we are -like the proverbial paddling ducks- keeping the efforts on the down low so the glide across the week looks seamless to the casual observer.  We know he’s not having fun, and we feel for him…there’s a lot of phone ringing going on everywhere these days…

And that’s Monday morning…



The long weekend made longer…

TGG is away for the weekend.  He left yesterday morning for work, and then drove to the airport in the afternoon to catch an early evening flight to Texas.  We expect him home sometime around 8 PM on Sunday.  J knows TGG is away, but this doesn’t mean he hasn’t asked for him almost constantly since 6 PM last night, right before we took him out to dinner.

Modern conveniences make it possible for TGG to call J iPad from his iPhone, and last night we experienced that moment when J sees his brother, live and in color, in an entirely different location.  To say that it was strange is an understatement.  We had to repeat where TGG is, what he is doing there and when he’ll be back more than several times before J finally petered out.

We petered out shortly after he did.  The day had been long for more reasons than one.  The day before a long weekend is always hectic at work, and J had endured a rather difficult morning on Wednesday so yesterday was a re-focusing day for him.

Wednesday was a day of overstimulation and reaction.  Right off the bat, J had to wait for the bus while a large cement idled in the driveway.  After fifteen minutes of this, the classmate that took to screaming on the way to school proved to be too much for J to bear.

While the meltdown was short-lived, it was a meltdown nonetheless.  I heard through the driver that regularly transports him during the regular school year, and I was ready to acknowledge the situation when J came home.  He seemed relieved to know that I understood what had happened once I recounted the whole cement-truck incident, and explained that a screaming classmate in a small space while the engine roared wasn’t necessarily something I’d react to gracefully.

We tried to prepare for TGG’s trip as much on the casual down-low as we could, but we didn’t exactly hide from J that TGG had plans.  In the morning, as agreed, TGG told J he was going to work, then to the airport, then to Texas, and “I will see you on Sunday.”  Of course, the boy who consistently forgets his colors would forget what TGG said almost immediately.

Our strategy has been simple.  We repeat, repeat, repeat, repeat where TGG is and when he’ll be back.  We’ve put TGG’s photo up on the PECS schedule for Sunday evening, and we are ready to take FaceTime calls from TGG in the evenings so J can see that his brother hasn’t completely disappeared.  Putting a pin on the map showing where TGG is and tying a thread from that pin to the pin that marks where we are has helped also.


5:30 a.m.

Somewhere under the many layers of my sleeping mind, I think I hear Captain Queeg’s steel ball bearings clicking.  The realization that what I hear in the darkened doorway is Slinky dawns on me…


US:  He’s in Texas. Back on Sunday. Go to bed.  (Muffled, of course, by pillows, blankets and sleepiness.)

J shuffles back to his room, and we see the light turn off.

5:32 a.m.


US:  He’s in Texas; back on Sunday. (A quick round of ‘rock paper scissors lizard Spock.’  I lose.)

ME:  I’ll put a timer for the coffee.  (I stumble over a cat, trip over my own feet, almost walk into the door frame, drag my way to J’s bedroom.)

During the time it takes for the iPad to turn on (which is, by the way, a lot longer than one would hope at such an ungodly hour):


ME:  We’ll have coffee on Sunday in Texas; your brother yeah yeah yeah…coffee…Texas…brother…Sunday…go back to bed.  ( I could have been more patient, but I forgot my glasses, was only illuminated by the iPad screen, and was trying to do Math to determine how long I should set the timer for…)

As I walk back to my room after closing J’s door:


ME:  Sunday. Later. Sunday. Later.  

I close our bedroom door behind me, and walk towards the bed.  I realize J WILL open the door.  I turn back and lock it.  I know he can easily undo the lock with his nail, but I hope he will realize this is a “boundary.”  I try to find my spot in bed, but Dada seems to have expanded, and two cats are now curled up on my pillow.  My love for animals is less than I imagined.

We manage to doze off in spite of the increasing amount of light filtering through the curtains, and the state of alertness that comes with having been awakened by J at 5:30 on a morning when we hoped he would sleep in…)

6:25 a.m. (Through our closed bedroom door)


He pauses.


He pauses again, and I realize this is most definitely NOT over, but my plan of sleeping until seven is toast.

J:  MOVIES????? MOVIES????? MOVIES?????

ME:  Yes, yes, yes, movies…get your movies…  (As I sit up I realize there is one cat on my ankles, and another on my abdomen.)

Dada has a look on his face that tells me “I’m trying to convince you that I am still asleep.”  I poke him gently on the ribs and say “you wanted children…I only gave them to you!”  He groans and opens one eye, smiling that dazzling smile I’m so madly in love with, and sits up in bed.

6:35 a.m.

I’ve found my glasses, removed the cats from the bed, pried Dada from under the blankets, and move towards the door hoping that I will make it down the stairs without a drop of caffeine in my system.  I open bedroom door and find that J has been patiently, and quietly, standing there waiting for me to come out.


Swiftly, reassured that his day (and ours) is underway, J bounces down the hallway to his bedroom, dissolving into giggles all the way.

Hey, at least we got the BROTHER SUNDAY part down pat…