Once more…snow…

We woke up to a winter wonderland.  Of course, it still is winter, and we keep forgetting this, mostly because we want it to be over.  An 80-degree day in February gave us a false sense of spring, and now we sit here looking at the snow accumulating on everything our eye can spy outside.

J was up very early.  Up and raring to go.  I think he (and I know this is weird) heard the snow and thought it was best to just make sure Dada was going to work anyway.  School was cancelled, but there is Dada, sitting in his office, hoping the road is properly cleared by evening.

J and I have done all the chores already.  We had them done by 8 in the morning.  That isn’t, regardless of how early it seems, a record.  We’ve actually (on other winter mornings) had our chores done by 7:00 or 7:30.  He is now working on a puzzle while listening to music, and I am trying to catch up with everything I’ve put aside because I keep getting distracted by everyday life.

The lip has healed.  It is beautiful.  There will be a small scar that will show it was once a small wound, but it will not mar the beauty of J’s smile.  Interestingly enough, J’s little lip scar is on exactly the same spot where I have one from a cataclysmic fall when I was three years old.  Mine required emergency plastic surgery, and I was very self-conscious about it growing up…J is just now fonder of lip balm than he used to be…he wants that sucker to gleam when you look at it.

Yes, things are busy here.  We are working on our spring cleaning little by little.  We have realized how big this townhouse is, and how ready we are for less.  Is that odd?  Our nest will never be empty, but we do want a smaller one nonetheless.  It’s not just the cleaning and the keeping things in order; we have become less charmed by the idea of more of anything other than time to be together, enjoying the little things that make us feel happy and peaceful.  This is not, of course, a life without problems, but rather a life without added bells and whistles that make the problems more overwhelming.

We also think that J is ready for a change.  He doesn’t really enjoy this weather.  I think the greatest advantage he sees in not having to go to school is that he doesn’t have to brave the slippery surfaces from here to the bus and back.  He also doesn’t mind not having to bundle up in sixty layers on a daily basis.  Going out to appointments or for fun is one thing; the layers are manageable then…but day in and day out it becomes a huge encumbrance, and J really doesn’t miss it.  I can’t say I blame him.

There are, however, little things that we keep discovering about each other, about J, and about ourselves.  J, for example, will always obsess about the weirdest things, but it makes sense to him and, when we put ourselves in his shoes, it makes sense for us, too.  J has come to realize that we, too, obsess over the weirdest things, and he has grown to accept these quirks.  He doesn’t always agree with, or understand, them, but he accepts them.  Negotiation between us has become easier, sort of, because we are more willing to understand the little things.  A hand extends to help me off the floor; more patience is exercised because an obsessive behavior needs to be expended.  Stopping in the middle of putting a Lego together because someone’s eyes are tired becomes easier; pausing to listen to instructions even though we really are in a hurry to be done so we can go back to whatever animated movie we are watching repeatedly becomes less grating.  Waking someone up more gently because a timer has gone off and we realize it’s bedtime but old people have taken a shortcut to that particular daily milestone is a recurring act of kindness.  Accepting a shorter timer because some people are more eager to end the day than others is no longer a Greek tragedy with chorus and all…

If we can translate all this into a way of living that stretches out for the next five to ten years we will feel like it’s an embarrassment of riches.  The moments when our lens refocuses and we are more realistic we get a little down in the mouth.  If this is not easy in our fifties, what will it be like in our sixties?  J is a young man now, but by then he, too, will have crossed another decade threshold, and there will be moments when we won’t be equipped to deal with what he requires from us.

We think about this more and more.  We worry about it.  We don’t agonize, but we do hear the wheels and gears clicking away relentlessly.  And so we plan on things being smaller, more manageable, more apropos to being able for a little while longer…

And it’s snowing, and it’s almost springtime, and time clicks clicks clicks…back to lists and plans, and culling and trimming.  Tomorrow, inevitably, is another day, and we have Legos to build because a Christmas village needs new buildings even when it’s no longer Christmas.  Yes, it grows out, and over, and around…  And while we can we will keep up.  It’s what we do.  It’s our concession to J’s idea of fun.  Pauses and all, it works for the three of us.

Until it no longer does, we will plug away at accommodating each other, at understanding, at adjusting.  Less spaces to clean, and rooms to organize will be nice.  Less disruptions that we are not prepared for will be convenient.  Is it possible?  We’re working on it…

 

It’s been one week…

(feel free to indulge in the ear worm that is The Barenaked Ladies’ song of the same name. I certainly am…)

since J’s surgery.  He should be, by all accounts, starting to work through the discomfort.  We are sure that this has been overcome, and all he wants right now is to go to the movies and eat a whole bucket of popcorn.  Last night he had very crispy (oven-fried) chicken, and he has no trouble eating his 12 Pringles crisps for afternoon snack.  If J had any pain or discomfort at all, we’d know it.

The blister on his lip is healing.  Lips are difficult things to treat because the tissue is soft and comes into contact with food, drink, and is impossible to bandage to protect from debris.  We clean it frequently, make sure it’s improving (it is,) and do all we can to keep it from getting hurt again.

Sleep pattern is slightly disrupted.  That is: since I don’t sleep much anyway (hello, middle-age…) I can hear J talking to himself, giggling, and basically waiting for morning to start.  It has been starting rather early.  Not just the waking up, but also the going downstairs and getting the day started in earnest.

J has started asking to exercise again.  It is comforting on the one hand, and exhausting on the other.  The cold weather that followed last Friday’s very summer-like day gives me aches and pains that announce my body is not what it used to be.  I accept this, and act accordingly, but J doesn’t always understand why his mother is not particularly excited about running for half an hour.  It must be done, though…it is a necessity.

We are all looking forward to the weather improving on a more consistent basis.  We won’t be growing a garden this year (if we’re considering moving it’s not a practical endeavor,) but we want to be able to open windows, go for walks, be outside.  This townhouse is (too) big, but it’s still not big enough for me to sit through J’s repeated playing of anything performed by Pentatonix.  Yeah, you can write it down and certify it: I might just be the only person in the planet who is absolutely annoyed, irritated, incensed by, and intolerant of Pentatonix.  I can’t stand them.  They hurt my ears.  When played on repeat, they assail my nervous system in ways that had been, until recently, reserved for Mariah Carey and Rick Astley.  Some time around Christmas a well-meaning soul told me “oh, you MUST watch this youtube video of Pentatonix…it will blow you away!”

Aside from questioning the person’s good taste and sanity, I started to wonder why they thought I, of all people, would find this appealing.  And then J realized how much it bothers me, and he plays it so I won’t go into the TV room.  We were putting a Lego together yesterday, and -since he realizes I understand there is no pause in Lego-building-  I would sit through whatever he was listening to…and he chose The Carol of the Bells (a song that I only can stand when The Sweeney Sisters do the Bells Medley on old SNL re-runs.)  The feeling of being trapped in a maze that kept shifting was pretty bad, and I actually told J “dude, you are better than this…seriously…”  He laughed and giggled, and started the song over again…

That’s where we are: J is back to his normal, mischievous, annoying, funny, brilliant self, and I am hoping that getting older doesn’t impair my ability to appreciate this.

And, yes, I cannot stand Pentatonix…even worse after I actually SAW them…  I know, I know, I know…I’m a horrible person.  So sue me…

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.

We return…

I will go into more detail tomorrow (if J allows,) but we made it through ok.  It was a little dicey, but they got the things out…the roots alone make ME want to take painkillers.

J has been a good sport about it.  He hasn’t had any pain medication yet, but he will need it later.  There was going into the bone involved…

So..more tomorrow…maybe

 

The Day Before…

Tomorrow is the day when J’s wisdom teeth are extracted.  He knows there’s something going on, but he hasn’t been told exactly what that is.  It is without any concrete knowledge and last night he was up and tinkering around his room well past his bedtime.  He was also up very early this morning…not just up, but up and about, bed made and everything.

I am pretty sure that J has superpowers.  It’s not the being up very late, or very early.  It’s the “I need a new Slinky.”  The last time he went in for this thing he had the same Slinky he replaced this morning.  No worries, Slinky didn’t go in the trash.  Slinky is actually going into a small display case with a label that says Slinky Summa Fidelis circa 2013-2017.  It’s the least we can do for a loyal companion who, sadly, lost its youthful spring and coil.  It kept snagging on things, and -today of all days- J decided it was time for dignified retirement.  That it was present for, and supportive through, every tooth extraction until this one speaks of a long, illustrious, respectable, admirable career.  If the boxing gloves have pride of place in J’s bedroom, Slinky deserves no less…

The other noticeable thing this morning was that J is favoring his jaw again.  It seems to pop out of place, and that is one of the things that told us he needed the dentist in the first place.  Twice now I’ve told him “they will take care of that tomorrow!”  He tells me GOOD MORNING and then BYE, but I think he’s starting to realize what all the preparations mean.

Yes, I have more ice packs than you could possibly imagine ready in the freezer.  I also bought him a rather large and comfy maternity pillow that you can use to prop yourself up.    Menus will include puddings, yogurts, hearty broths with polenta, ice cream, the silkiest scrambled eggs you can possibly imagine…I’ve even trotted out the recipe for cornstarch pudding that my aunt used to make when I had dental extractions as a child.

We have Legos, movies, music.  A bag has been  packed with books to keep J engaged while the pre-op stuff is done.  We have the TWO iPads, and plenty of music in them.  As far as these things go, we are prepared.

Not much else we can do now.  We just wait for them to call and say at what time to be there.  We then plan the rest of the day, and the eight hours previous to the surgery, accordingly.  And then we come home and we go about the business of recovering, and accepting J’s ill humor (if he has it,) discomfort and pain (that’s par for the course,) and we set in motion all the things we’ve planned for this situation.

Wish us luck.

I would sing you a song of medical insurance…

Oh, well…

There is NOTHING like getting a call from the hospital telling you “by the way, Mrs. J’s mom, the medical insurance says they won’t cover J’s dental procedure because the policy states it has to be an ACCIDENT for them to cover OR and anesthesia.”  OK…wait…maybe there IS something: hearing that, unless the medical insurance covers it, you will have to find eleven-thousand and three-hundred dollars to cover a procedure that is, oh, ten days away????

Kids nowadays can text at breakneck speed.  I am from the good ol’ days of written letters, rotary phones…and yet I dialed every number necessary to get in touch with the medical insurance company at a speed that would have impressed even the most world-weary Instagramming and Twittering fifteen year-old.  I pressed those buttons and got through to a rep as fast (nay…FASTER!) than a Kardashian or a POTUS.

(Let’s just say I’ve realized that I’ve got the talent when it counts, and I’m grateful for it.)

Of course, the call could have gone better.  I can dial back the sarcasm (such as when I told the rep that taking a hammer to my son’s face and calling it an accident was out of the question,) and I can not hyperventilate into the phone.  I am pretty sure that I said (rather emphatically) that the use of the OR and general anesthesia was not elective, or to prevent J from having to go through pain or discomfort.  I remember being cool-headed while hyperventilating, and saying “help me help you help him.”  It was all strangely Jerry Maguire, but I didn’t launch into Tom Petty’s Free Fallin’…thankfully.  Now the ball is rolling in the right direction and, hopefully, we will have a positive result in the course of today.

If not…well, to quote Sally Field’s Emma Moriarty tells the bank officer after being turned down for a loan in Murphy’s Romance: “I’d go out on the streets, but you’ve only got one.”  We would, somehow, figure it out, but it wouldn’t be easy.

J is feeling the anxiety.  It’s been a bit of a week around here.  For one: TGG’s youngest was born on Friday after a rather long and difficult labor.  She is healthy, and she is very sweet.  We met her on Saturday, but left J at home with his sitters because going to hospital is not a favorite activity, and being surrounded by toddlers and nurses overstimulates him.  We will wait until the baby is older, and J has had time to get used to pictures of the family together, of his brother holding a baby and sitting with other kids.  Overprotective much?  Maybe, but it all depends on how you look at the situation; we don’t want TGG’s stepchildren to feel intimidated by rather imposing figure that is J, and we don’t want J to feel like we’re forcing him to interact with children he doesn’t know well-enough.  Dribs and drabs will have to work for now.

The weather has improved and soured, improved and soured, and seems to now be improving.  I am hopeful of a walk to the mailbox and to take the trash later, but I am not counting on it as a certainty.  There are still plenty of dogs out there, and J knows it.

The primary care physician cleared him for surgery because his heart seems to have an issue that doesn’t preclude general anesthesia.  This doesn’t mean we’re not anxious.  We try to cover it, but it’s still there.  We exercise and tweak the diet, but the anxiety lurks under the normalcy of our days.  One day J runs 2.5 miles and another he does 5; other days he does the Island Lap on his Wii Fit, and there are days when he is on the elliptical.  He doesn’t lose weight, but he doesn’t get winded while exercising.  He does, however, get anxious and that makes him breathe rapidly.  This, of course, doesn’t help matters for us.  One week away from the surgery, and we are a ball of carefully camouflaged nerves…

How well we do with our attempts at looking as cool as cucumbers is anyone’s guess.  I think we fail miserably because J suddenly gets into “hovering” mode.  How realistic is it that we are completely denuded of anxiety?  It isn’t.  We can’t help it.  Even in the best of circumstances we will know it’s there, and once you know it’s there…well…

So what do we do?  We don’t lie to J.  That’s one thing.  We will not tell him “this is all good, and we are not worried.”  We tell him that there are things we need to work on; we tell him that we are doing our best, and that it’s perfectly fine to not be 100% sure of anything all the time…

Stress is a given in our lives.  Everyone, regardless of how Zen they think they are, has stress.  How it is handled is up to each individual.  We have our own stress factor built into our home life.  Autism isn’t a factor to be taken lightly, and it is an inescapable one in our household.  The stress factors we do have a degree of control over are outside factors, and we are (carefully, thoughtfully, after considerable reflection) doing more and more to pick and choose our battles.  We now go over stress factors with tweezers and a magnifying glass, holding them up to the light for inspection.

A lot of things are going.

This is not an easy (or painless) process.

All we need right now is to make it through next Friday, and have J’s wisdom teeth out, and then help him make his way through the convalescence that ensues.  This won’t be easy…or painless.  Maybe it will be a temporary step back.  Maybe it will be a couple of temporary steps back.  Maybe we will regret it for a brief period of time.  Maybe it will spring us forward.

Who knows?  Who ever knows how these things will go?  All we can do is try to figure out the best way to handle J’s needs and take the best care we possibly can in fulfilling these, and soothing his anxiety (and ours) in the process.

I wait for the phone to ring as I continue to look for change between the cushions of all couches we own…

 

 

An unexpected turn of events…

It might be nothing, or it might be something.  We won’t know for a couple of days yet, but we are -as the fact that I am mentioning it might hint to all of you- keeping in mind that we might have one more thing to work on…

J had his physical yesterday, and a short appointment became a longer, more complicated one.  His blood pressure was high-enough that it warranted double-checking (the first time was done by a student doing her practice.)  We ended up what was a rather anxiety-riddled (for J) encounter with the doctor with an EKG and a chest X-ray.

The purpose of the whole appointment was to clear him for surgery later this month, and now we wait for the specialists to determine if we need to scrap that idea, or if we need to dig deeper, or if this was just a misreading, or what.

One of the things that warranted extra attention might/might not be an effect of the long-term use of the Risperdal, and since J had used it for five solid years (albeit at a low dose) and spent some time off it before it was restarted, that could be part of the issue.  The other issue seems to be unrelated to the med, and might require a more direct evaluation by a specialist.

The next 36 hours will not be easy to twiddle our thumbs through, wouldn’t you agree?  Why is it that you can hear if Beyonce is pregnant and see proof of it all over the world in ten seconds flat, but waiting for a specialist to review your son’s EKG takes about two days?  Ah…because the first is not something that has anything to do with your child’s health, your peace of mind, the state of the modern world, social justice, or anything important.  What matters takes longer, ages you, robs you of sleep, and makes you go back to peeking in on the kid even though he is an adult who should no longer require that much attention.

But, of course, what I see every time I log on to my computer is Beyonce with a veil, flowers, whatever, and no e-mail from the doctor.  When the phone rings it’s the same pre-recorded message from Andre (calling from six or seven different area codes, naturally) asking me to donate to a fake (I checked) charity organization.  I still run to the phone in case it’s the doctor, and -being a middle-aged woman who hasn’t really got used to her bifocals- I don’t really look at the Caller ID, or wait for Robot Ernestine to tell me that number that’s calling.  (That’s a reference to a Lily Tomlin character…

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I know you’re not as old as I am, but feel compelled to use these little things to keep my brain from getting too serious…)

Maybe his blood pressure was up because he was anxious about the appointment.  But the EKG noticed something that shouldn’t work the way it does.  Of course, a primary care physician has to consult with a cardiologist, and then we go from there.  His labs indicate that his red blood cell count is higher than it should be, and that has nothing to do with the pill he takes, but a hematologist has to review the results and then we go from there.  So we are on deck to depart in different directions, but we don’t yet have a ticket…how’s that?

It took a while to get him to give in to all the poking and prodding.  I had to negotiate, be firm, persuade, cajole, beg, and be firm again.  In the end we got it all done, but Dada came to join us at the doctor’s office in case things got testy.  Once we were done with the medical aspect of our excursion, I treated J to shopping for his birthday.

We have more train tracks than space, people.  And, if I am good at reading my son’s body language, we need more.  This might require disassembling and reassembling the whole village.  It might also involve moving furniture.  Considering that the cold weather has returned and we’re not likely to go anywhere for the next couple of days, this is a productive activity to be engaged in, and if Dada helps J with the new Lego cabin-in-the-woods, we will have yet another building for our little community.

These are the thoughts, concerns, preoccupations, tasks, ideas that presently engage our attention.  J is mildly moody today because he got, to top all other injustices heaped on him yesterday, his flu shot.  His arm, obviously, will not be tennis- (or laundry-, or help-mother-with-chores-) ready until tomorrow, but it’s a small price to pay.  I know he’s recovering still from how overwhelmed he was yesterday, and am giving him space.

Yes, I still go in there and -while lip-syncing to Zero to Hero from Hercules– I check in on him.  Yes, I still go squeeze him and hug him, and give him fish kisses that he mock-rejects until he starts giggling and asking for more.  Yes, I have the phone next to me…and my reading glasses perched precariously on the tip of my nose to read the screen if I have time.

I am well-aware that there are far worse things parents have to confront when it comes to their children’s health.  I don’t think our particular situation is extraordinary or worthy of more attention and empathy.  I know this might pass, or not.  I do know with certainty that, should it not be “nothing,” we will deal with it…

It’s the waiting, see?  It’s the not-knowing.  It’s the same thing I used to tell the kids: when you’re scared of something, find out its name…if it doesn’t have one, give it one.  Things are less scary when you know what they are…when you can call them by a name, and say ‘well, screw you…so-and-so…’  The first time TGG watched M. Night Shyamalan’s  Signs he was tremendously scared…until he saw the monster.  It was a tangible thing then, and -let’s face it- kinda silly-looking.  He still wanted us to make sure it wasn’t hiding in the bushes outside his bedroom window in our first-floor apartment in Anaheim, but he didn’t feel as overwhelmed as he did when he didn’t know what it looked like.  He was no longer uncertain of its appearance…he knew what he needed to look for to see if it really was there.

And that’s all we want.  We want to know.  Because when you know, well, it is not that you don’t worry, but you know WHAT you are worried about, and WHAT can be done to address it…and isn’t that more productive?