One week…

I could, given the proper encouragement, spew a long list of imprecations that would colorfully fill in the spaces created by our anxiety over the (seemingly) sudden arrival of May and, with it, the official, irreversible and final closing of J’s school years.  Don’t encourage this, please, I’ve become more descriptive and uncouth as I’ve watched the clock tick towards this moment.  Our Webster’s Third New International Dictionary sits on the desk, waiting for me to dig through its pages to find a new BIG WORD to send through the air, cleaving my nervousness in half.

I know it sounds like I’m thinking this is D-Day, or like I’m about to embark on some tremendous undertaking…like Mount Rushmore, the Suez Canal, the Pyramids, Machu Picchu, or the Great Wall of China.  I’m just transitioning an adult from school to no school.  Piece of cake…not a box-mix cake, but piece of cake nonetheless…

Whether you attribute it to Flaubert, van de Rohe, or Warburg, the whole “God is in the detail” comes to mind right now.  And then it morphs into “the Devil is in the detail” because little monkey wrenches keep being thrown into the gears, and we realize that each task completed and refined is the springboard to another.  Every day brings another thing we “forgot about” to our list.  It’s the little things.  It’s the stuff that we wouldn’t normally expect to have to address…

As I work my way through the normal schedule of MY day, my mind keeps popping with ideas of things I have to do.  Is the schedule board good enough?  How do we phase out the smaller boards that used to address getting ready in the morning, after-school activities, packing our school bag?  How do we translate the contents of his lunch box into the panorama of eating at home every day?  This will not be a big-scale social activity (well, as big as the scale can be in a SpEd classroom,) and we have to figure out a better way to integrate socializing into J’s at-home world.

A step in the right direction has definitely and firmly been taken.  J now puts his new friend, MedSchoolGirl, on the board without prompting.  He likes her.  They still are a bit hesitant around each other, but that’s the way these things work.  (Cue Getting to Know You from The King and I.)  The people down at Five Guys welcome J every Saturday like Elvis has entered the building; he likes that…it’s like Norm and Cliff have entered Cheers at the same time.  If this is Saturday, it must be Five Guys…after Kroger, of course, but the sea of people is greater there, and J goes mostly unnoticed.  Tuesdays we see the baby and his mom, an exercise in reliving the toddler years with a lot more exhaustion and a lot less strife involved.  J and his nephew continue to dance around each other, trying to figure out how they feel about each other’s presence.  So far so good…

The search for a gym buddy continues.  TGG is out completely.  If we see him once a month we consider ourselves lucky.  He doesn’t call.  He texts.  We’ve grown accustomed to the new status quo and, quite honestly, we don’t think that J would feel the same comfort he used to feel around his brother.  That is strange to us, and yet it seems a lesson in how we all are -to a degree- expendable to this person who lives in such a limited world.  You fill a need, you have value.  You leave, your job is passed on to another who will take it.  It’s not that J doesn’t love, but J doesn’t have time for wallowing in thoughts of abandonment and loneliness.

I know he is trying to figure out why there is a sense of loss surrounding these next few days.  There is a saying-goodbye quality to all the planning, and it is not the saying-goodbye he has learned to live with over the years.  There is no “we’ll see you at the end of summer,” and no “you’ll see some of us at summer school.”  There is “we’re going to miss you.”  There is “time has gone by so fast!!!”

In the meantime, I am working on different conversations from the ones we’ve had over the years when he got off the bus.  I no longer will have to ask “how was your day?”  I probably will because I’ve always had very good customer service skills, and I want to know how J has felt about what we’ve done and the way we’ve done it.  And I will keep tweaking the processes and fine-tuning the routines.

We know each other pretty well.  We are, and I hate to say this because I’ve realized that it’s not ENTIRELY true, a close-knit bunch who try to be there for each other.  We know a lot.  We are not so tightly-woven together that there isn’t room for surprises, but we’re also not oblivious to the idiosyncrasies of each other’s fears, strengths, hopes, concerns, aspirations.

J simply doesn’t want to not be a part of something.  I know this about him.  He is happy being by himself, but he doesn’t want to be lonely.  He is happy at leisure, but he doesn’t want to be bored or useless.  He knows how long days are, and how long they can feel.  This is true of all of us.

So we are down to the wire.  It’s the bottom-half of the ninth inning, bases are loaded, two outs…

It’s been a long, good season…

 

 

 

 

 

 

The vagaries of winter…

For J’s birthday the weather was lovely.  We were out there with no jackets or sweaters.  It was like spring, but perhaps sweeter because it was in January.

Cut to the past two days and the next three or four…it’s cold, people.  It has snowed, but not so much that we’re stuck.  Just enough to make a mess of roads, to freeze over, and to cancel school…

J is being philosophical about it.  Being stuck on the bus for hours a few weeks ago had an effect on him, and he doesn’t really like walking on icy roads so he knows there’s a reason for being stuck indoors.

He had fun on his birthday.  He went to watch Kung Fu Panda 3, and he had steak for dinner.  We made cupcakes, and had ice cream.  We even gave him a sip of wine.  Were it not because we are fiercely protective of his privacy I would show you his reaction.  He is NOT a fan of wine.  He immediately requested a second bite of his cupcake and said BLECH with perfect pronunciation and enunciation.  It could not be mistaken for anything other than BLECH.  Perhaps, someday, he’ll make peace with beer, or perhaps he’ll stick to soda…

Very little has changed about J since turning 21.  Well, perhaps he’s added a few more pin-up girls to his walls, but that’s about it.  I think we have altered our mindset more than he has, but I expect that’s normal.  He doesn’t fully comprehend that he is an adult, and we do.  Life, we know, slowly changes and there’s not much you can do about it…other than watch and adjust.

The next adjustment we’re facing, and it’s a big one, is TGG moving out, and helping J with this transition.  J is sort-of getting used to TGG’s absences, but seeing his room completely stripped of his belongings might cause him anxiety.  We don’t really know yet, but we’re preparing for some iffy situations in the coming weeks.

The first thing we’re going to do is repurpose the room where TGG is currently sleeping so it can be more of a hangout room for all of us.  We are going to have J help us choose what we’re putting in there, and -hopefully- this will help him adjust.  If it doesn’t, well, we’ll go back to the drawing board.

The way things are right now, we’re looking ahead to mid-May and the big changes in our family life.    We are planning a short vacation with just J, and the search for a hotel with adjoining rooms in our prospective destinations is an important aspect of the planning.  We are no longer restricted by the school calendar, and we can move freely to see the fall colors in areas far from home, or spending a major holiday elsewhere…  In a way, this is all surreal to us.  We can’t believe we have reached this point.

You always hear how life is about change, and often wonder how that is possible if your life seems so stationary.  One moment, suddenly, brings the realization that things have been shifting in a nearly imperceptible manner all along, and you are left wondering where the time went, and what you did with it.  I admit to sometimes looking around and seeing tangible proof that my/our time hasn’t been wasted.  Other times I’m left scratching my head.

I know, in my heart of hearts, that we’ve been “doing” things, and have “accomplishments.”  I don’t know how these rate in other people’s standards for “doing” and “accomplishment,” but I’m confident we’ve managed to evolve over time.  In what ways?, you ask.  Darned if I can list them.  We’ve moved, at best, at a glacial pace 9/10 of the time.  That we’re not competing with other parents to figure out whose kid is more advanced soothes my anxiety.  People have long since realized that they win hands down, and they’ve let go of the competition.

At a certain point in life, I suppose, the race to “be the best parent” is replaced with “be the best grandparent.”  Since we’ve entered that fray in a rather unexpected way, and the make-up of our extended family is not particularly traditional, we’re no even in the race.  We love our grandson.  We think he’s awesome.  We will encourage and support him.  We are there for him.  We are not going to let anyone put pressure on this disparate group of people who are involved in this child’s life to prove that he’s “good enough” at anything.  Our main concern is that he establishes a good relationship with his uncle J; this is proving tricky, of course.  J is HUGE compared to Little B, and Little B is still too young to understand that they share many interests.  That understanding will come in time, but when you look like a little mite compared to your uncle, well, the time might be a little longer than the rest of us would like.

J is, as we all know, a gentle giant.  He is Ferdinand the Bull.  He is Lambert the Sheepish Lion.  He is a sweet cupcake with a jam center.  He is kindness personified, and he is very gentle and quiet around his nephew.  Little B hasn’t yet figured out that, in this particular equation, he is most definitely the Alpha, but I’m sure that, as he approaches the Terrible Twos, he will notice that Uncle J is basically a human jungle gym with an excellent selection of toys, books and movies.

Life, as I said, keeps going whether we’re ready for it, or not.  The alternative, of course, is not to be alive.  And we actually enjoy the mess we live in, even if at times we don’t quite notice that things have altered over time, or if we notice that they haven’t.  That the kids are adults means we’re adults…amplified, and slowly shriveling.  We can deal with that, I suppose.  It does, as I said, beat the alternative…

And it snows again, and it’s cold again…winter can’t make up its mind, and ain’t that always the way.

 

School’s out for summer…one year to “school’s out forever.”

The big calendar I prepared to map out the summer months goes a long way to getting J ready for school to be out.  That last week is always a lulu if he doesn’t yet quite grasp that we’re in the last few days of “going on the yellow bus.”  His first encounter with the calendar is always tricky, but once he realizes that summer school looms ahead like a promise, he’s fine.

The D.C. landmarks are something he hasn’t yet figured out, but tonight we’re having a family meeting to lay out our plan for this trip.  I have learned all the necessary sign language (TRIP, HOTEL, VACATION, and so on) to help us along the way, and I think it will all be fine once we sit with the map and make sure J understands we’re not MOVING…we’re just TRAVELING.

This is one of our problems: we seldom take vacations, and we’ve only really traveled for total, utter leisure ONCE.  Every other road trip we’ve undertaken has involved some sort of “event.”  We move; we drive somewhere to see a university and then we move there; we drive somewhere for a job interview, and then we don’t move there.  We’ve only just taken ONE totally leisurely trip in our entire life as a family.  We went to San Francisco in 2002, and J LOVED it!  J’s totally a “let’s walk around this town” sort of person, and when we returned (for a job interview/let’s pretend we’re just having fun) two years later, J was even more pumped about it.  Since then, we’ve had moving trucks and many miles to cover, and the madness that ensues with relocation regardless of how carefully laid-out our plans are.  So…there’s no blaming J for eyeing the calendar with wariness when he sees a picture of our car, and several days of a town that doesn’t look like this one.

There will be several more changes to the PECS board before we leave.  We will be meeting my niece, nephew and his wife for dinner our first night there.  I have not seen my niece since 1989, and I haven’t seen my nephew since, possibly, 1990.  TGG has met them several times before, but Dada and I haven’t seen them for a very long time, and J has never met them.  I am hoping this goes well…

The biggest change to our PECS board, though, is the appearance of J’s nephew.  TGG has mended fences (there WAS some maternal interference and I’m not ashamed to admit that I’d been chomping at the bit to get in there) with his baby’s mother, and we now have a good relationship with our non-traditional extended family.  Upon meeting his nephew (a sign we had to learn,) uncle J (another sign we had to learn) promptly kissed the top of his head and thus anointed him as a person he doesn’t mind having around.

The baby, of course, found his big, jolly, hat-wearing, Slinky-carrying uncle somewhat fascinating.  I am sure that once he becomes acquainted with J’s TV room, uncle J will promptly become the coolest uncle on the face of the planet.  J, on the other hand, will have to adjust to the fact that there is a smaller, younger person who will command our attention and require our help to get things done.  At the age of one, June Bug is less capable than J at the age of 20…

TGG’s room now features things it didn’t have before: a small travel-crib, baby toys, baby clothes, diapers…  His car has a baby seat.  There are baby bottles, spoons and bowls in the kitchen cupboard.  And there’s humility.  The same guy who last year didn’t understand why being a father matters melted like butter in the hot sun of the desert when he first met his kid.  We have taken like ducks to water to being grandparents.

So as you can see we are starting an entirely new stage in our family life.  We now have relatives. We now get visits from little June Bug and everything seems to have changed.  When we go shopping, we buy things for June Bug.  When we think of future vacations, we think of June Bug.  When we talk about family, we talk about Favorite Girl and June Bug.  Favorite Girl…since she’s not a daughter in-law, she needs a title, and I flatly refuse to refer to her as Baby Mama.  We’ve all agreed on kindness and respect, and we’ve all agreed that June Bug goes first always.  J’s needs and special traits come into play, but I think we all understand that, too.  I mean, there wasn’t really any balking at the “Happy Bitchday” he wrote on June Bug’s birthday card, and it doesn’t surprise me because these are really very kind people.  We made more of a fuss when we noticed than they did.

In other news, the first batch of soaps J made was a success in some ways, and not-quite a success in others.  He needs to add more moisturizer, that’s for sure, and he needs to really spray those bubbles on the surface away, but everyone was impressed with how beautiful and fragrant they are, and how nice the packaging is.  It’s a learning process, and J is learning and tweaking and putting an effort in…  We couldn’t possibly ask for more.

And so ‘summer’ is happening.  The calendar tells us that we have to wait for the official date to call it that, but it’s happening.  It’s here.  J’s on vacation and accepting of this development.  We are ready.  We have suitcases to pack, addresses to plug into the car’s GPS, pictures to take, feet to abuse by walking more than we would under normal circumstances.  Life is good.  Maybe next year we’ll start ‘summer’ -and the rest of J’s non-student life- by taking a bigger, better, longer, more exotic trip, but for the time being this will do…a three hour drive, a nice hotel, and some sightseeing for the people who haven’t seen sights for fun in thirteen years…

Can’t wait!!!

Day Three of the Big Chill…

Beware warm January trends that require no jacket, and give you the impression that this winter will be a piece of cake.  Fruit cake…heavy, dense, impossible to digest, best used as a doorstop fruitcake is what you’ll probably get.  I speak from experience…

I don’t know how many times I overheard Dada saying “how about that?!  Not a flake of snow all December!  It’s been downright warm compared to last winter!”  If there is one thing I’ve learned over years of being with this man is that he SHOULD NOT be allowed to talk about the weather.  Every single time he comments on how it’s too warm, too dry, unusual for the time of year, BOOM!  We get a triple-dose of whatever should be expected, and the weather forecast turns into an exercise in grotesque hyperbole.

On Tuesday morning we got Kierkegaard’s call and school was delayed for two hours, and then canceled.  Tuesday evening we got the call delaying school for two hours, and at six-thirty a.m. yesterday it was canceled.  Last night we got a THREE hour delay.  We all exchanged looks and said “that’s a closing waiting to happen.”  This morning, with the wind howling and the forecast calling for subzero temps, we looked at the map our local weather guy puts up with color-coded closings and delays.  Amid a sea of red, indicating school districts that closed their operations for the day, two or three yellow areas indicated hold-outs clinging to their 2-hour delays.  We couldn’t help but wonder if superintendents sit watching the screen to see who will be next to cave, and who will be the last superintendent standing.  Do they give out awards at the end of the school year?  Judging by the stubbornness that leads to a three-hour delay on a morning when the temperatures are expected to hit -20 with the wind chill, one would suspect this is a “thing” among school district heads.

J is taking the whole thing in stride.  I think last year we experienced enough school closures to teach him that this is par for the course where we live.  He asks for his Bus Song, but he can tell when we’re singing half-heartedly, and we observes who’s calling on the phone’s Caller ID, and our movements around the schedule board.  With a sigh of acceptance, J moves to gather laundry, take out puzzles, and line up chores we can do…if that’s not maturity, I don’t know what it is.

And, speaking of maturity, tomorrow is going to the psychiatrist day and we’re talking about reducing J’s med one more time.  I think we’re ready.  We will have, of course, a few days of rough-patch behavior, but we don’t expect (fingers crossed, knocking on not-compressed but ACTUAL wood, doing the sign of the cross, muttering a fervent prayer and wishing on a star) any difficulties aside from the usual “why is my body chemistry slightly off????”  I’ve read the notes of our previous forays into reducing the Risperdal, and I’m confident that we’ll do well…

(Let those not be famous last words, please…)

The truth is that J is maturing, and that it’s a joy to witness this.  It’s also true that I am grateful that J is becoming more and more his own person; as I age, a little of the pressure is taken off me and he takes control of more of the things he wants and needs.  At the same time, some of the feelings of “I could be doing more” return.  I think every parent experiences these feelings, and I think parents of autistic individuals know these feelings all too well.  I know J likes being by himself; it’s easy for him to find entertainment, and he relishes being so self-contained.  We all do our best to encourage him to spend time with us.  I know that J is ready for “togetherness time” when he shows up offering his DVD of Daddy Long Legs, and TGG has encouraged him to do the same with Danny Kaye’s Hans Christian Andersen.

A few mornings ago, TGG saw a bit of Hans Christian Andersen on TV while he had his breakfast before going to work, and I told him that I’d bought it for J for Twelve Days.  TGG, of course, acted as if it would be a supreme chore to sit through the whole movie, and dragged his feet when J took it out to play.  An hour later I walked into the TV room to find the boys cuddled under an electric blanket and happily watching the movie.  I brought a bowl of popcorn and they looked like the two little boys who used to watch Toy Story together so many years ago…and then J kicked me out of the room because, well, I’m mom, and mom isn’t allowed to interfere during “togetherness time” between the brothers…

For Twelve Days, TGG got J a Five Guys gift card, and J was over the moon with joy at being able to eat there (because he loves the food and the music they play,) and because TGG explained that they’d be using the card together.  On the Sunday after Christmas, J climbed the stairs to TGG’s room and announced that they were going to lunch.  This made us all laugh because it was totally spontaneous.  The following Saturday the same thing happened.  TGG says that not only is J well-known among the employees, but he also has a favorite spot from which to watch the food being prepared.  Once they have their order, J chooses a table and they eat and hang out together.  It’s nice to know they enjoy each other’s company, but can function individually the rest of the time.

In other news, we’re considering the possibility of traveling with J to Puerto Rico.  I have to visit my parents, and this requires going by plane.  J hasn’t been on a plane since 1999.  The world (and security measures) have altered a great deal since then.  The eternal quandary of how J will deal with a situation that is run-of-the-mill for others is always in play, but…we’ll see…

Before any of that, of course, we reduce the med…again.  We will brave the cold, the mild anxiety of being in the doctor’s office, and we’ll see what happens next…

Stay tuned…

 

If the common cold is the worst of your problems…

The only thing missing from TGG’s demeanor in the face of a cold is Eric Idle calling out “bring out your dead!” as he follows our first born around the house.  On average, human beings catch a cold (or what passes for one) once a year.  That means that TGG should know by now (his supposed 23rd cold) what this process is like.  All you get are palliatives…you’re going to feel like crap until the thing is done with you, and that’s all there is to it.  The pediatrician told me (back when TGG had his first cold in the summer of 1991) that we’d be passing the same cold around for the next 18 years or so, depending on how many kids I had.  It wasn’t just the cost of living and the responsibilities that come attached to being a full-time parent that made me stop at two kids…it was the common cold.  Once you’ve had a baby get sick with a cold, and you’ve experienced the alternating stuffy/runny nose, the cough, the crankiness, and the crying, you sort of tell yourself there’s only so much you are capable of as a human being.  

It is 2014.  I should be done with all this by now.  However, because life and the universe have a sense of humor, and the current economy isn’t cooperating, I am -once more- surrounded by adults with colds.  This morning, with the smell of Vicks Vapo-Rub lingering in every room in the house, and with wads of crumpled Kleenex being paraded like flags all over the place by my children I decided to do a little positive thinking.  It took a while…I’m sort of still working on it.  I came up, so far, with “at least they’re no longer in diapers,” “50% of my children are very skilled at blowing their noses,” “I have enough Vicks and Kleenex to see an army through a bout with the cold,” “at least it’s not snowing.”  Feeble, I know…

Yes, J has -perhaps out of hero-worship, or simply because he failed to steer clear of his brother, Mr. Focus-of-Infection- a cold, too.  This morning I had so much trouble persuading him to uncurl from his preferred “I’m sick, can’t you tell????” position in bed that I opted to keep him home.  TGG, who is a full-time employee with benefits and a full-fledged adult with privileges, immediately wailed that he wanted to go back to bed.  I told him to find the Time Machine, switch it back to 2008, and -while he was at it- remind me that I REALLY want to exercise regularly  before I hit that troublesome spot called “the middle-aged point of no return.”  He was appalled that I would take this tack instead of sending him up to his room, and tucking him in…

“But I’m sick!!!!!!!!!!!!!!!”  Well, boo hoo you…

The survivors of the sinking of the Titanic didn’t complain as much while waiting for rescue as TGG did this morning.  As a mom, I feel for him.  I see the three year-old with the Thomas the Tank Engine underoos clinging to my shoulders are he sobs because his nose is stuffy.  I also have reached the point where my reaction tends to be “suck it up, bud.”  

My children (yes, even J!!!) are appalled by my lack of sympathy for their melodrama.  “I’m not your maid” is my favorite response when J becomes overly needy.  “Well, you’re a grown-up!” is what TGG gets most of the time.  The only reason J got to stay home today is because when J gets sick it can be pretty nasty if we have to go to the doctor.  For the record, we’ve been working on school stuff since early this morning, and between sneezes and sniffles, he’s done his chores.  TGG called during his morning break saying a cup of tea had made him feel better, and then immediately added “I know, I know…you’ve been telling me this for ages!”  

I have.  I have been announcing adulthood and its (so-called) travesties since I can remember.  The common cold, sadly, doesn’t stop the world and all its workings when you’re a grown-up.  More often than not, grown-ups have to buck up with very little hesitation.

TGG is in a transition period right now.  This transition period was entirely initiated (although he was unaware at the time) by himself, and he has to segue into a new stage of life because of it.  A world of responsibility (that he wasn’t looking for) is being put on his shoulders.  He didn’t ask for advice so we gave him none; he didn’t consider consequences, so now he has to deal with what comes out of the grab-bag.  My philosophy (and it’s not springing from the well of meanness that he sometimes believes lies deep within my core) is that if he can’t learn to buck up when the common cold comes a-knocking, he’s going to have a hard time being a full-fledged, fully-vested adult.  All the kind warnings issued out of wisdom are now replaced by figurative slaps in the face to wake him up to the fact that it’s rough out there, and -at this particular moment- he is lucky to have a cold at home, with mom and dad standing by.  At one point or another, we all have to face our first independent, solo-flight, on-our-own, oh-God-I-think-I’m-dying, moooOOOOOOOOOOoooom-where-are-you??? common cold.  

There comes a time, in every individual’s adult life, when the certainty of rescue boats while you’re floating in a lifeboat among icebergs and debris is not as concrete as you would hope.  At one point or another, we all have to learn to row with whatever we can to get closer to rescue.  If, as in Life of Pi, you find yourself stranded and the tiger in the boat is not something you can handle, you will not be able to face all the complexities of life as you should.  The resident Pi has a boat he’s stuck in, and Richard Parker is circling, growling, menacing, threatening…he’s read the book…he knows the tiger is him.  Now he has to tame it, teach it, cure its cold, and choose to drift (or float, or row) to safety…

Oh, but the whining and complaining…they are made less intolerable only by the absence of soiled diapers…

A funny thing happened on the way to gratitude…

Gratitude is a strange feeling.  We say “thank you” a lot, but we don’t always realize what that means or implies.  J is a big fan of THANK YOU, but it often sounds like what he means is F*CK YOU.  With him it can be such an automatic response that the urge to say “yeah, yeah, whatever” is often there, on the tips of our tongues, waiting to tumble out.

I will confess one thing to you: our gratitude is often arrived at in a crash, or expressed through gritted teeth.  This is not because we don’t have what to be grateful for, but rather because -a lot of the time- we end up being grateful for things we might have been dreading, and things we were unprepared for until they happened.

Take, for instance, the Teeth Issues that dominated the first half of 2013.  We are, surprisingly enough, grateful for those, and we really would not have dreamed this gratitude was at all possible.  We are grateful because of several things: a) J’s teeth have been taken care of, b) J actually learned to communicate better in light of this situation, and c) we realized J is a lot more resilient than we thought.  We are grateful that The Kid Who Was Godzilla has learned (somehow, someway) to manage the anxiety that would have turned Teeth Issues into a catastrophe a mere three years ago.

For some strange reason, we are also grateful for J’s recent meltdowns at school.  I know this sounds weird (wrong even,) but the truth is that we have figured out that it’s not the medication that J is having issues with, but rather some sort of -as yet undefined- dissatisfaction with the environment there.  While we are not grateful that we don’t know what causes this behavior, at least we can be grateful that it is not a constant attitude that seeps into everything he does and that reverts us to where we were when we couldn’t even go shopping without incident.  So, let’s say we’re grateful that this is contained to one location so far, and that we can work on solving the mystery of its provenance as diligently as possible.  Our success hinges on so many factors that it’s not even funny, but…we’re grateful that we are no longer entirely paralyzed by the notion of having to figure things out.

We are grateful that TGG seems to be maturing a little more with each passing year.  I say “a little more” because nowadays kids aren’t fully ready for the adult world until they’re much older.  At the age of 22, TGG still hasn’t fully grasped the complexities of adulthood, and -from time to time- he will do something tremendously bone-headed, but we are grateful that he has moved one more step away from his innate stubbornness and generational arrogance.  It might be that he realizes he’s too old to not take advice, or that we’re too old to put up with childish bullshit from a grown-up, but -inch by inch- we’re moving forward on that territory and, eventually, we’ll be firmly planted in Grown-Up Land…or, rather, TGG will be.

We’re grateful for the Keystone Kops-like quality of our guardianship process.  If that hadn’t exploded in our faces when it did, we wouldn’t have been angry enough to get REALLY proactive about the whole thing.  Until we had to actually take over and bypass the attorney, we didn’t know what the heck we were doing, or how to work through the intricacies of the process.

Annoying and overwhelming though it has been this year, we’re grateful for Dada’s job.  At a time when so many people are trying to make ends meet, we’re doing that, but with the certainty that -for now- there’s a steady income to support us.  In the great scheme of things, we have all we need, and we are not facing any desperate want.  There are so many people out there who have nothing, and need so much…we haven’t taken a vacation in years, but we have a roof over our heads, food on the table, medical and dental insurance, and what more can one really ask for???  Love…and that we have in spades…

We’re grateful, even when we think it’s a backhanded blessing that we’re being given.  Do we deserve all that we get from life?  Not all the time, no.  I admit to you, and this is not an easy thing for me to say, that I don’t deserve nearly half of what I get.  I am, you see, a bad daughter and a bad sister, and being as good a mother and wife as I can be doesn’t fix that.  I am suffering from terminal petty selfishness, and there are things I cannot let go of because I am not as good a person as I’d like to be.  That I am, in turn, being deluged with all these wonderful things makes me feel terribly guilty, and I feel even guiltier when I say to myself that I am thankful for all the good (backhanded or no) that comes my way.

This is the thing: we have a severely disabled  young man we are raising; his future is uncertain because, well, all futures are, and the complexity of disability and such plays heavily in this mix; we don’t  own our own house, and the one we live in is, truly and sincerely, a tremendous luxury that we’ve committed to because -selfishly- we want to be more comfortable, and we want J to have his own space; we have debt that isn’t crushing…if I worked outside of our home, which I don’t do because we’ve decided I should be 100% available for J year-round.  We have a ten year-old car that runs beautifully, but has emotional issues; we have a 22 year-old son who’s learning to be a grown-up and sometimes resents us for expecting more from him than he wants to give; we have aging parents that we don’t see as often as we should; we are aging very quickly, and not as gracefully as we’d like to, but we are trying -very hard- to not fall apart in the process.

Sometimes I look at our life, and I ask myself why are we so happy???  We live paycheck to paycheck, have an 18 year-old who needs supervision when he showers and can’t count farther than 30 (on a really good day,) never go anywhere exciting or do anything fantastic.  Our home is decorated in the style I like to refer to as “genteel decay on a broken shoestring,” and we don’t belong to a cool social set.  We play board games, buy the Sunday Edition of the New York Times once a month, and take a whole month to read it, curl up on the couch to read together, consider a 100-dollar pair of shoes an excessive luxury, have disjointed traditions that don’t fit with those of the rest of the world, own more rugby scrum caps than a whole rugby team would need even though NONE of us play rugby, dread the notion of a car repair or a major medical emergency because either would crush us financially, and can never own a dog…and yet we’re disgustingly, profoundly, sincerely, honestly, wholeheartedly happy…

Through gritted teeth, and directly from the deepest corner of our hearts, we are happy…and if that isn’t enough cause to be grateful, then we can add all the little trimmings that go on the side: our kids are funny, smart, interesting, a little weird; we are madly in love with each other; we cook really well; we have our health, even if it squeaks from time to time…  We are grateful.  Grateful.  Grateful.  Grateful…and today we can say it without gritting our teeth, and with the house smelling of turkey that is slowly roasting, and cats that are snoozing in corners, and J that is walking in and out rooms demanding attention and then immediately rejecting it, and TGG pushing gurneys and waiting for 4 o’clock, and my family diaspora that I can never repair, and Dada’s family that we don’t see often enough, and still we manage to live steeped in love and the craziness of our “normal.”

And for all that we are grateful, no “yeah, yeah, whatever” about it.

Every little thing gonna be alright…

Bob Marley was right.  Some days I believe this more than others, but it’s the fact that I believe it at all that keeps me going.

This move has been hectic.  This move has made us realize that we are no longer young enough to endure this type of uphill battle with the ease we used to, and that we need glucosamine, exercise, a healthy diet and REST in plentiful amounts.  Middle-age is upon us, and you know what follows middle-age, don’t you?  The interesting thing is that the kids are starting to realize that we’re no longer just “old” in their minds, but -in fact- older than we’ve ever been before.  There IS a difference, you know, between your kids considering that you’re old and your kids suddenly KNOWING that you’re old.  Even J is lending a helping hand to help me get up from the floor when I’ve made the ridiculous mistake of sitting there to fold laundry…

I confess that I have worries.  I have worries that go beyond the usual ones I harp about here.  I worry about our health (as individuals and as a family,) about our financial situation, about J and TGG, about the weather…I have other worries I don’t mention, and some nights I wake up and wonder if all that is seemingly “sticky” about our lives will ever be cleared up.  The answer to that is probably NO because, well, that’s not the way it works, but…

J is very well settled into our new home, and his new routine.  Like the rest of us, he has learned his way around the new arrangements, organization, habits and location.  He knows where everything is and he is comfortable.  I couldn’t ask for more.  Yesterday he even ran with the Wii and enjoyed the space in the garage.  We got an accurate weight reading and, while we haven’t really lost as much weight as I’d like him to, it now seems more viable to get him to work out every afternoon because he’s no longer needing to move coffee tables, chairs and whatnot to properly exercise.  While we did our quick jog, he went from garage door to back of the garage, and from door to wall, laughing at the idea of “look…I can move without knocking into things!!!!”

J has claimed the basement bathroom for his own.  In the mornings, when he is getting ready for school, he uses the one across from the bedrooms in the top floor, but the rest of the time he prefers the one in the basement. Who wouldn’t want to lay claim to the bathroom with the Peanuts shower curtain????peanuts-snoopy-shower-curtain-at-target

 

With all the things I worry about, there is one that has become less and less of a pebble in my shoe: J’s med.  I can now safely say that I know we can keep paring down the Risperidone until it’s gone.  If there’s something I have finally understood over the past few months it’s that J can navigate change a lot better than I sometimes give him credit for…silly woman that I am…

The move was a bigger hassle for US than it was for him.  The move was more tiring for us than it was for either J or TGG.  We are the ones laden with worries that are really hyperbolic.  We make mountains out of molehills.  We are starting to realize that maybe, just maybe, the kids have cooler heads than we do.

No, no, no…we are nowhere near our dotage, but we are slowly reaching a point where major decisions like moving require a lot more help from the “kids” than they did before.  J has done a lot more heavy lifting this time around that I expected him to, and he has done it while looking at me like I need all the help I can get.  I do.  I need all the help I can get.  I can admit that now.

There are a few things I’ve promised myself I won’t fret about anymore: money, health, family time.  It might seem like an unlikely list of concerns to put aside, but I discovered the following things in the middle of a mindless task in the garden yesterday afternoon: money is necessary, but we can always find some if we try hard enough; health is something you have to work on, and if it breaks down because of something out of the realm of your control, then you deal with that…worrying gets you nowhere; we spend a lot more time together than the average family, and it’s because we want to do it, not because we don’t have options.

I am going to tell you a silly story now that filled me with hope yesterday afternoon.  It all has to do with strawberry plants.  It has to do with barren soil, and with leaving things unattended for a few days until we have time to get to them.  Until the cats went outside to acquaint themselves with the surrounding landscape, all we’d done with the great outdoors behind our new home was move some plants down to the patio, set down some pavers, set up the grill and promise ourselves we’d “get to it soon enough.”  That was on Wednesday the 28th of August.

In those few days, my friends, the strawberries that had been languishing in a container by the deck railing set roots on the barren soil, and I only noticed when I went to put them in the big planter we made a few months ago with discarded lumber and landscaping fabric.  We know it will all come back after winter, and we now know that it will all come back on that spot in the ground where we didn’t mean to put it.  There was no way I could pull them out…and I didn’t want to do it either.  Over the next few days, the temperatures will be in the 80s, and I think this respite from cooler temps is to give me a chance to figure out where I’m hanging the herbs to dry.

J takes every day as a gift.  I don’t know where he learned to do that, but his initial reaction (95% of the time) to the beginning of the day is one of happiness rather than dread.  Well, once he is fully awake…at first he just says BYE to us.  The point is I think I can now pull a page from his book and copy it: everything’s going to be fine.  Strawberries taking root in what might someday be an actual patio?  Kids that extend a hand when we can’t get up?  The realization that, while we can no longer do as much as we used to, we can STILL do some things???

Yeah…we can do this.  We totally can do this.  In its own way, everything’s going to be just fine…