First week of ESY is history!

Monday we had to skip the first day of summer school.  The bus driver assumed that I’d know (magically…rising like a fairy mist from the forest primeval of my memory) what bus, and at what time J would get picked up.  Thursday, Friday, Saturday and Sunday went by without a call giving us the information, and by five PM (because I tend to cut people some slack on weekends,) I decided that I had to find out all this information.  The back and forth phone calls did not resolve the issue, so I made the executive decision of keeping J home on Monday.  I was NOT, because I’ve been there and I’ve done that, going to stand on the corner with a person who is anxiously waiting for the bus if the bus is not going to show up…

J was confused by this development, but he accepted my argument that we had to clean the house from top to bottom.  He was, as is to be expected, up bright and early, and armed with every cleaning implement known to man and available in this household.  I am thinking of never again using “cleaning” as a reason to keep him home.

Tuesday morning came and J was so happy to get dressed and walk down to the bus that he nearly dragged me all the way down there.  The enthusiasm hasn’t waned since; he has a new teacher this summer, and it seems to be a good set-up for him.  Tomorrow the sun is supposed to be out, and we will go to the pool and work in the garden, and I’m sure J will be happy to see the BUS PECS go up on his board for next week.

Tuesday evening was a big day for J scale-wise: he is below the 250 pound mark, and losing at a steady but prudent pace.  Every pair of pants requires a belt, and the bathing suit that suffered from PTSD from last summer has been taken out of circulation because it’s too big.  Cauliflower has become a new favorite, and when he can’t go to the gym to use the machines he’s bummed out, but doesn’t mind exercising in the garage to make up for the missed workout.

Next weekend will be interesting.  TGG is flying out to Texas to visit my brother after many years of not seeing him.  J, who usually looks for BROTHER if dark has fallen and he’s not home, is likely to be a handful for the duration of this absence.  On the plus-side, Friday is a holiday so Dada will be home, and we might just go on a long drive to entertain J.  Thursday night, however, will be interesting; TGG is leaving directly from work for the airport, and his flight is at 6 PM, which means we won’t hear from him until maybe ten PM when he gets to my brother’s house.  The incessant chorus of BROTHER will mark that evening, and a video phone call with TGG might not completely solve J’s issues.

At the end of July it will be Dada’s turn to travel.  He will be going to CA to see his dad, and I am up to my ears in trying to find the proper flight arrangements, a rental car, and so forth.  I know they make it look easy in those commercials on TV, but there is a delicate balance that must be struck when one is planning these things.  If you factor in that this is not a cheap trip, well…it makes the process all the more convoluted.

Between the car, the airfare, the times that are convenient for this whole thing to happen…well, I feel like I’m planning something by far more complex than a visit to an elderly parent.  How people manage to go on vacations with more than three people traveling is beyond me.  Just looking at the prices is giving me a rash!  And that’s not even factoring in all the other incidentals.  People ask us: do you like to travel?  Well, we WOULD if we could afford to without having to sell any vital organs to achieve it.  As it is, one person going to CA for five days is, to put it mildly, quite a luxury.

I don’t know where William Shatner is right now, but he’s certainly not sitting next to me helping me with all these departures, arrivals, stops, fees, and whatnot.  J, on the other hand, thinks the way I say EEK! is funny, and tries to get me to do it over and over again.  Every airline in the country seems to be willing to help him.  I’ve said EEK! a lot while calculating how much money I have to pay into our credit card to make this a viable project.

The reality of life is this: we are a family of four, and our income is comprised of Dada’s salary, J’s SSI, and TGG’s pay.  We are not “vacation” people.  That J requires routine, structure, and is always wanting to “do something” means we’re not “stay-cation” people either.  In the great scheme of things, we are people with fake-dirondack chairs in the backyard, and a nice view; we are people with a garden, a bird feeder, a bird bath, and a wild birds of…guidebook.  We are people who travel because someone is sick, or because we are moving.

So bags will be packed, and EEK! priced tickets will be bought, and airports will be shuffled through, and it’ll all be for the good, but we won’t do it as a group anytime soon, and we will continue to be dazzled by the notion that others do this with their families, going places, buying souvenirs, eating meals, navigating airports…

I’m having another EEK! moment.  I am playing with every discount card we have from anywhere, and the EEK! doesn’t abate.  Oh, well…it is what it is and that’s all that it is.  I guess the trip to Paris to go shopping is not in the books, is it?  We’ll have to make do with J’s Mickey and Minnie in Paris jigsaw puzzle…that was, after all, less than six dollars WITH tax…

Week two of Summer School…here we come!




Reading IS fundamental…being there for it is even better

J cannot read.  This, however, has little to do with how many books he owns, or how many stories he knows and loves.  He has learned to love books and stories because we read to him, and reading is about more than just the words on the paper, and the places they take you.

When I was 18,  Reading Rainbow started airing.  I watched Reading Rainbow…I didn’t have children until I was 26.  I watched Reading Rainbow with TGG, and then J even before they were old enough for stories.  Books were a staple in our everyday life…

My love affair with books started very early on in life.  I had an uncle with a well-populated library, and I visited that library as soon as he drove off to work in the mornings.  I would reconnoiter his bookshelves whenever I was sent in to ask him a question, bring him the mail, and so forth, and I’d locate the next selection I would extricate from the tightly packed shelves to read on the down low.

Among the books he had, one morning I happened upon a glossy cream-white spine among the many paperbacks and leather bounds.  The book wasn’t new, but it was new to me, and I pulled it out and scurried away through the door that connected his bedroom to the one I shared with my aunt.

Going in and out of that room wasn’t easy.  The space available to me was quite narrow, blocked with furniture, and there were latches -and no doorknobs- on both sides of the door.  The eye hooks on each side weren’t even on the same level so it took a little bit of negotiation to unhook, and then re-hook them.  Yes, my friends, there were doors that opened into the hallway, but the risk of being asked “what are you doing in your uncle’s room????” was quite high.  My uncle, you see, was very particular about his things; everything was neatly organized, and he valued his privacy and the inner sanctum he had created for himself.  Many a time I was chided for having used the pencil sharpener in his room, moving Don Quixote a centimeter to the left to grab a book that was behind him, and so forth.  Stealth was my forte to a degree…I was easily startled by the creaking of floorboards and the sudden rising of voices from all around the house so I would, without wanting to, leave some sort of minimal trail of evidence behind me.

The book I found, with its creamy-white spine, was called El Polizón del Ulises, or The Stowaway of the Ulysses, and its author was Ana María Matute.  The story revolves around a foundling who is raised by three spinsters in a rural area in Spain; the spinsters are three sisters with very distinct personalities, and  Jujú at times feels like he can’t quite live up to all they expect from him.  Jujú loves the sea (though he has never seen it,) and makes for himself a “ship” in the attic, and dreams of adventure and excitement.  When these things come into his life, it is in the most unexpected way, and he experiences things that change him forever, that make him grow up…

I was raised by three aunts, and I -too- seemed to be in a world where what was expected of me surpassed what I could, in fact, do.  I, too, had a galloping imagination, and my dreams were grand.  Like my friend, Jujú, I eventually grew up.  I didn’t grow up so much that I don’t still read this book every year.  Like Jo, Meg, Amy and Beth, Jujú and his “aunts” became a part of my family.

Of course, I went on to read many books over the years.  I’ve read Ms. Matute’s work, and I’ve always loved the respect her work shows for children as characters, and as readers.  Ms. Matute grew up during the Spanish Civil War, and her work often touched upon her experiences during that time.

Ana María Matute died today in Barcelona.  She was 88 years old.  A few years older than my mother, through her characters, she became part of my family.  My uncle, my aunts, taught me to love books; they gave me books, or they read to me.  I, in turn, have done the same with my children.

Why am I saying this?  Well, we are up to our ears in technology these days.  Wherever you go, people carry cellphones with them, and I’ve seen many parents handing over their iPhone to their kid so they will be “entertained” while waiting at the doctor.  By the same token, I see a lot of parents surrounded by kids at the public library on Saturdays; I see a lot of kids participating in the activities the public library has to offer for them.

Being a parent is an interactive endeavor.  You can buy your kids books, but it’s always best when you read to them, doing different voices for each character.  You can tell your child a story, but it’s always best if you jump around, move your hands, change your facial expression as you go along.  You can watch movies with your kids, but if you’re holding your cellphone in your hand, you’re not really WATCHING the movie with your kid.  Listening to music with your kid is great, but it’s better if you dance, clap, hum, whoop…

I’ve often been asked if J likes being read to, and -from time to time- someone has asked if he even “cares.”  I mean, they’ve said to me, does he even know what is happening?  People have told me that reading to babies is “good and all that, but…do they understand????”

Kids understand that you’re spending time with them, that you’re offering them something for nothing in return.  Kids find that you’re opening a door, and they might be tempted to open others and see what’s on the other side.  While times have changed and books are no longer “just paper with words on it,” the value of the time one spends with a child is undiminished.

My uncle didn’t read to me; he was just not that type of person.  He was an educator, and he recognized a hunger for knowledge and information when he saw it.  My aunts read to me, and made every story (regardless of how familiar it already was) special and interesting, even in the re-telling for the millionth time.

When my uncle left that particular book, with its creamy-white spine and its boy surrounded by “aunts,” he left me something even better than just “a story.”  My uncle knew that I’d recognize something of myself, my life experience in those pages, and that’s something every kid needs…

So, on this day, my friend Jujú and I are mourning the loss of his creator, and I am reminded of how important the simple act of giving a child a small world between two covers (or on a screen, if you prefer that) is so important.

Maybe, for starters, they won’t “get it,” or “understand,” but they will know you are there…and that is what truly counts.

Out of the mouths of babes, and into our futures as mothers…

Thirty-six years ago, a young lady wrote a humorous piece criticizing the abundance of chicken and oatmeal in her family’s menus.  These items, of course, were quite affordable compared to other things like cereals with toucans, frogs, cowboys, leprechauns and tigers on the boxes.  Persuasively friendly though these creatures seemed, the price of one of those boxes of cereal (in spite of the prize contained in the very bottom, and always pictured on the box with the disclaimer: enlarged for detail,) did not justify buying the amounts needed to please a population of four children.  One wanted the frog, the others asked for toucans, leprechauns, or tigers, and then the consensus was that the friendly purple vampire or the cavemen seemed more appetizing in hindsight.  For the price of one large container of old-fashioned oatmeal, everyone could suffer in the same degree.

The chicken was another story.  Thanks to the oil crisis under President Carter, and the high cost of living, the most readily affordable meat was chicken meat.  Grade C chicken meat, of course, because a family of six (with three males vying for the appropriate amount of food to sustain them) could get by better with more lower-grade chicken than fewer prime-grade chicken.  Any requests for ground beef, steak, or a remote query for pork would elicit a “put yourself up for adoption” from the lady of the house.  The chicken came in what can only be described as a brick, and it had the appearance of an orgy of poultry frozen in the middle of a very convoluted game of naked Twister.  Defrosting that bacchanalia of chicken was a long, drawn-out process, but not as long and drawn-out as trying to disguise it into something it didn’t look, or taste, like the night before.

The humorous piece in question argued against the evils of oatmeal, and the excess of chicken in one’s diet.  The conclusion: the family would have to change its legal name to Pegasus, as they were all about to turn -inevitably- into flying horses.

This morning, as I sank my spoon into my morning bowl of oatmeal, I was recalling the day I wrote that essay.  I thought I was being clever.  Of course, I was maybe twelve, or thirteen years old, and I wasn’t in charge of buying the groceries, cooking the meals, or stretching the budget.  My parents thought the whole thing was hilarious.  I realize NOW that they were laughing at me, thirty-six years later, shopping for groceries to feed a family of four and crying while looking at the price per pound of beef and pork.  They were also laughing at the fact that I would need the oatmeal because fiber is good for your digestion, and I need all the good digestion I can get.

J and I reorganized the freezer yesterday, taking stock of what we have, and making note of what we need.  We DO NOT need chicken.  We might not need chicken for several weeks, OR we might need to buy more chicken if pork and beef continue this week to be as much a luxury item as they were last week…and the week before…and the week before that…and…you know what I mean.  J was rolling his eyes and clucking every time I said CHICKEN, and he would make another checkmark in the column decorated with a rather scraggly-looking hen I drew for him.  The scraggly cow got only three checkmarks, and the sad-looking pig remained checkmark-less throughout.  J’s pencil hovered over the pig column, and when no PIG was forthcoming, he dropped the pencil and sighed heavily.  CHICKEN!  Yes,  I said…lots and lots…

Oscar Wilde came to mind as J walked into the kitchen looking like his future was covered in feathers: Children begin by loving their parents; after a time they judge them; rarely, if ever, do they forgive them.  I definitely understand the plethora of chicken I had to eat during the Carter Administration now; walking around the grocery store and feeling the urge to whisper “my precious!!!!” at a tray of pork chops tends to enlighten one in a hurry.  I don’t think Oscar Wilde was exactly referring to food items when he came up with that lovely statement, but I hope someday J and TGG will understand that the chicken is, well, practical…  In hindsight, a lot of my current attempts at reinventing our daily dose of poultry are inspired by chicken recipes my mother would put in front of us all those years ago.  That I spend more time trying to mask the chicken, to coax it into more palatable forms is only proof that I spend more time at home than my full-time professor mother did.  My mom was a great cook, but she was always in a hurry…the chicken sometimes seemed to have put on pieces of three different costumes before heading out to trick or treat.

This, however, doesn’t change the fact that, like many mothers before us, and like many mothers yet to come, an economic downturn, a scarcity, a family difficulty, a financial bind, a lost job might force us to pirouette around the grocery store looking for something edible and affordable to lure our family to the dining table.  We all have met, or will meet, with a degree of disappointment when, yes, under that sauce or that breading is the same thing they had yesterday, and the day before, and the day before.  J, who loves routine more than anyone else I know, gives me the fish eye at dinner when he sees, yet again, chicken gracing his plate.  My strategy to deal with this is: what did you have for lunch today?  NOODLES!  What did you have for lunch yesterday?  NOODLES!  What are you having for lunch tomorrow?  NOODLES!  At least here you’re getting either rice, couscous, potatoes, lentils or something different with the same bird!

Typical teenager, J rolls his eyes, and then tucks into his chicken.  Eventually he gets into how tasty it is, but until then it’s easy to see him composing his own version of my Chicken Manifesto of 1978…

By the year 2050, 36 years from now, I will be 85…but I promise you I’ll chuckle at the complaint queue for the chicken parade.  OR maybe not…my chicken dishes will, more likely than not, be mashed by then…




It is not so much the laziness of summer, as the busy-ness of it…

Our days, surprise surprise, start early and end late.  Between one and the other, as usual, a multitude of things happen.  Sometimes, by the time I sit down to write here, my mind is simply too full to concentrate, or too tired to make sense.

While J, of course, prefers TGG’s company to mine, I am what he is saddled with from morning until late afternoon.  I would love to tell you that the difference in demeanor while he’s with me, and when TGG walks in the door is trivial, but it’s definitely noticeable to anyone with a sliver of functioning brain.  I am tolerated, endured, accepted…TGG is the end-all, be-all.  On Sunday they went to the movies; they missed the first show by half an hour, and we ran into them at the bookstore.  J was perfectly happy just chilling with his brother, and then he saw we were there and rolled his eyes and whipped his Slinky around like Indiana Jones.  TGG reassured him that they were going to get lunch, and catch the next show.  Such relief I had not seen in J’s face since the last time we walked right past the dentist’s office without stopping.

In the mornings we go through the same routine: is everyone but us leaving?  Yes?  Wonderful.  Excellent!  By three o’clock it’s “everyone will be back soon, right?  There’s not a whole other slew of hours stretching endlessly ahead of us until they get here, right???”

Yesterday we went to J’s appointment with the psychiatrist.  All the attitudes and behaviors J is displaying are completely normal for a person his age.  That basically means that, yes, we are LAME, and he’d rather hang out with his brother.  J will happily sit with us at a very noisy restaurant and eat onion rings (yes, that was a first!,) and sip on his soda, but he’d rather have TGG around.

The doctor told me that, to a degree, this is not awesome because of the age difference, and the fact that TGG has a life and friends of his own.  But, at the same time, it is totally awesome that they have bonded, and that the oldest and neuro-typical sibling is involved enough to spend lots of time with J.  Whatever transitions take place from here on end will have to be handled with this closeness of theirs in mind.

In September we will, once more, make the trek to the doctor’s office to determine whether it’s the right time to reduce J’s med again.  I have high hopes for this.  I am enthused about the frantic few days when it seems like we’re not doing well, and then he levels off…at a lower amount of medication.

The doctor is impressed with J’s weight loss.  J is currently just a few pounds above the weight originally registered when he started visiting this hospital system, and that was a little over 3 years ago.  That J had ballooned to more than 30 pounds above that weight, and that he’s managed to almost completely lose that amount is a good sign.

Today we walked down to the pool at around 10:15 a.m.  I took out J’s swim trunks and hoped for the best.  They fit well, but then they started drooping on his hips.  I think we can resort to his XL pair tomorrow.  He was very happy with this development; he sat on the edge of the pool (as he likes to do) and didn’t have to keep adjusting his waistband so it wouldn’t cut into him.  Added to the fact that every pair of pants he owns requires a belt, and he has finally given up on wearing the snow boots, life is good around these parts.

Every morning, after carefully scoping out the dog situation outside, J goes to water the garden.  He gets through the cucumbers and zucchini quite quickly because they are closer to the little dog next door.  The rest of the garden he waters a little more leisurely, but not so much that, should the dog suddenly emerge, he cannot escape to the great indoors.

Our improvised bird bath and bird feeder are attracting all sort of feathered friends, and J takes great pleasure in watching our cats get frustrated in their efforts to reach the birds.  On the kitchen-level balcony we often see hummingbirds as we eat breakfast, lunch and dinner.  J shushes us so the lovely little hummingbirds won’t get scared, and then claps with joy when they’re done with their visits.  As we walked from the psychiatrist’s office to Dada’s office yesterday afternoon, a rabbit bounced out onto the law by the PRT tracks, and J stopped, not wanting to spook it.  He signed RABBIT, and then watched as the furry creature bounced away towards yet another hole.  The first thing he said to Dada when we reached his building was RABBIT…the second one was BATHROOM.

While at the doctor we learned that J’s blood pressure is vastly improved, and his weight is steadily decreasing.  We also learned that J is now more patient while the doctor and I are talking, and that his obsession with asking to leave has all but disappeared.  While on previous visits, J would use his iPad to incessantly ask to go to the store, to leave, to go home, to go in the car, yesterday he asked once and accepted my answer: we are not going to the store today, and we will go home from Dada’s office.  When the doctor asked him about a new restaurant we tried on Saturday, J thought for a moment and then, with an a-ha!!!! look on his face, used his iPad to say PIZZA and SODAY, and asked what we were having for dinner.  When I told him, he found the pictures for MEAT, POTATO, and BROCCOLI.  He asked for PIZZA, and I told him maybe we can go again on Saturday.

What’s not to love about this?  What’s not to love about the ability to negotiate, understand, and ask nicely?  I’ll tell you what…there’s NOTHING not to love.  It was awesome!  It was wonderful!  It was a dream come true.

On the way to Dada’s office, I would like to point out, J made sure that he walked close enough that he wouldn’t “lose” me, but far enough away that we would’t exactly look like we were together.  As we navigated a grassy slope that leads from the sidewalk to a parking lot next to Dada’s office, J made sure there were enough feet between us that I didn’t appear to be helping him.  He did, however, stop to look if I’d made it ok.  Once he was assured of my safety, he started walking quite leisurely, looking at my route out of the corner of his eye.

Dada, who had seen us from a window, asked “what was that all about?”  Easy, I said, he’s too cool for school, but he didn’t know which direction we were going so he was being aloof…








I have brothers.  Because I’m a female, my relationship with them doesn’t have that vibe that brothers share.  I have a sister, but the difference in our ages created a rather competitive atmosphere that never really altered in spite of both of us reaching a more mature age.  My relationship with my sister can be neatly encapsulated in a bit of dialogue from Jodie Foster’s Home for the Holidays:

Claudia Larson: You don’t know the first thing about me.
Joanne Larson Wedman: Likewise, I’m sure. If I just met you on the street… if you gave me your phone number… I’d throw it away.
Claudia Larson: Well, we don’t have to like each other, Jo. We’re family.


I am Claudia, and my sister’s Joanne.  It works for us…sort of.  I try not to think too much about it.

My husband is one of five sons; age differences notwithstanding, he and his brothers have an easy way of communicating and interacting, but it is easier with some than with others, and it has pretty much matured as they have.  The eight year-olds can rear their heads occasionally, but they mostly keep it in the fifty-something year-old range.

And then, of course, we have J and TGG.

TGG and J are very attached to each other, and -precisely because of that- they can easily get on each other’s nerves.  Sometimes it’s because their moods don’t match; sometimes it’s because they’ve spent too much time together.  Other times it’s intentional.  That they are 23 and 19 years old respectively has very little to do with the level of maturity at times reflected in their time together.

J still outweighs TGG by about 75 pounds; this, of course, is an argument in favor of J climbing on top of his brother, who is still sleeping, when TGG has promised to take his baby brother somewhere.  This also does not affect TGG’s enjoyment of tickling J until J, who loves being tickled until he doesn’t, roars and tackles his torturer.

J and TGG interact a lot more now than they did when they were younger.  It was difficult for TGG to break through to his brother while the veil of J’s self-absorption was made of heavy velvet.  Not only did it hang rather heavily, but it was also rather hard to tell where the opening was.  A lot of TGG’s complaints when J was little were based on the fact that J wasn’t “fun.”  And the reason J wasn’t fun was because TGG couldn’t get through to him at all.  J would be in the center of a room, and TGG would be all around him; while J sat, focused exclusively on whatever it was he was doing, TGG would be doing ten things around his brother.

Once in a while, J would shift outside his zone, and TGG -in typical older brother fashion- would complain about the intrusion.  J was always the mountain Legos were trying to climb, the Godzilla-like monster about to topple over some building, a brand-spanking new Pokemon creature to threaten TGG’s game…  As kids, they were in the same room, but in different worlds. J loved TGG fiercely, and missed him when his brother went for sleepovers.  TGG was always happy to see J.  They didn’t, however, have that brother-thing that leads kids to pick on each other, beat each other up, defend each other, snitch on each other until a few years ago.

As adults, J and TGG have a different vibe altogether.  TGG comes home from work and seeks his brother out; in the evenings they go to the gym.  On weekends they go to the movies.  They go get food together.  J will not leave the house in the mornings unless he’s woken TGG up, even if TGG doesn’t have to go to work that day.  J will do TGG’s laundry, and then put it away for him.  They now negotiate for the last roll, the last handful of mashed potatoes, where to eat…

TGG will, when his brother wants to be left alone, crawl on top of J’s bean bag and start giving him fish kisses until I hear an “OW!!!!  That HURT!” because J has toppled him onto the floor.  J will find a word that he can repeat 10,000 times until TGG cover his ears and yells “STOP IT!”  They will throw pillows at each other when they’re supposed to be changing sheets.  Bedtime stories turn into sessions that don’t quite lull and wind-down, but rather energize both of them.  We have distinctly heard Joe Pesci’s voice throughout all of Mouse Tales, but only when J isn’t laughing so hard that he drowns out his brother’s voice.

I wonder what will happen when TGG moves out.  If J now repeats BROTHER incessantly when TGG goes out at night, what will happen when TGG moves out?  What will happen if TGG moves out of state?  Out of the country?  Granted, the likelihood that these things will happen anytime soon are pretty slim, but…not as slim as they used to be a year ago.

I envy J’s and TGG’s relationship a little.  It started iffy, but has found solid ground.  The signs were not good in the beginning, but they have improved over time.  Instead of being separated by their differences, they seem to be closer because of them.  Their way of communicating has been fine-tuned to a shorthand that gets them out of the house, and away from a dinner menu that doesn’t appeal to them very quickly.

Aside from the usual insistence on driving each other nuts, J and TGG have a desire to protect each other.  For years now, if TGG thinks I’m being too harsh on J, he will intervene.  If TGG is getting scolded, J will draw attention to himself, even if it has to be negative attention.

Because of the particular set of circumstances they’re dealing with, that they’ve developed their own way to interact and communicate is great.  Maybe this has been the ideal way for them to develop their relationship: getting the self-centeredness out of the way before finding the common ground, the playfulness.

I like to think that this will turn out just fine in the end…

Wild horses with social graces

“Chance is the first step you take, luck is what comes afterward.”
― Amy Tan, The Kitchen God’s Wife

A year ago, in the heels of J’s dental saga, we implemented the “count between bites” system for his meals.  We were, at that time, pretty fed up with J’s habit of inhaling his food like Monstro the Whale from Pinocchio.  Indigestion by proxy was a problem for us; it’s hard to consume a meal pleasurably when you witness the same exact food playing the part of the bird in a scenario that involves a plane engine.

There is no denying that, since the year of the meltdowns, J had improved significantly in many ways.  By the same token, there is no denying that, from circa that time, we had developed all these defense mechanisms that often involved relenting, negotiating, and downright surrendering.  Little by little we gained territory, but food was an issue…a major one.  Of the 33.5 pounds of cheese consumed per capita in the US each year, J was consuming his share and ours.  Not only that, J ate more ramen noodle than any college student on a budget has consumed in the history of ramen noodle as a college student diet staple.

It is a well-documented fact that we can now take J to eat at restaurants, and he paces himself instead of trying to imitate the people who gorge on hot dogs and pies just to prove that they can.   That we can now take him to restaurants that don’t have a mascot, and that don’t serve one of a very limited list of items J will eat is nothing short of a wonder.  A few nights ago Dada and I went to have Thai food, just the two of us; still in the “let’s look at the menu” stage, Dada asked “do you want to order an appetizer?”  Without missing a beat we said in unison: calamari…J’s not here to bogard them!!!

We now have in our midst a version of J that will try any green food item you put in front of him. Orange items he will smell to see if they are appealing.  Cauliflower will be eaten regardless of how it’s prepared.  Yesterday morning (in one of my Little Engine That Could moments) I took left-over mashed potatoes, pureed carrots, wheat germ, an egg white, and some fresh herbs and concocted what I hoped would pass for some sort of pancake.  J ate two…because there were only two left.  His omelet had fresh spinach leaves, a small amount of cheese, and egg whites…he ate it with enthusiasm and making his nom-nom-NOM sound.  He savored every bite…I know this because I was savoring my breakfast, and because pieces by Telemann, Boccherini, Mozart, Schubert and Haydn played while J ate.  The same person who considered it torture to wash his hands while singing the Alphabet Song now takes his time eating, savoring, enjoying, and not questioning what I put on his plate.

A year is not such a long time.  In 365 days we have gone from wondering HOW to get J to eat better, less, more prudently, more calmly to watching J start on vegetables, move to meat, and eat the small amount of carbs we put on his plate.  We have gone from nearly 290 pounds to a hair over 250, and every pair of shorts that required a belt by the end of the day now requires a belt as soon as it’s put on, fresh from the dryer.  The excitement that was reserved for Pringles, mac and cheese, Ramen noodle and Cheez-Its is now clearly visible when Yogurt Time rolls around and the home-made pear chips are handed to him, or when it’s hummus and pita chip for an afternoon snack.  The last time that J ate Ramen noodle was January 9th, if memory serves…for someone who HAD to have Ramen noodle for breakfast to quit cold-turkey and be OK with never eating that again…well…call me Betty Ford, please.  I think J’s been cured of the hyper-salty, waxy-noodle addiction he harbored and clung to quite stubbornly.

We have the same exact kid in our home, but he’s a lot healthier and (we think) a lot happier.  He has discovered that strange looking things he discounted when we presented them to him can be tasty.  He has discovered that it’s ok to like things that we used to refuse flatly without giving them a chance.  He has discovered that cheese can be delicious even when we’re not single-handedly consuming the 33.5 pounds per capita per year…four times over.  J has discovered that not everything has to be salty or sweet to be delicious, and that a handful of chips can be just as satisfying as a huge bowl full of them.  J has learned that we are not as crazy as he thought we were, and that going to the gym for an hour every afternoon and actually getting on the machines and sweating can be very satisfying.

On Saturday morning, we did the usual rounds: library, market…you know the drill by now.  For the first time in his life, J went to a Dairy Queen.  We ordered a hot fudge sundae for him, a small one.  As we sipped our Orange Julius-es, J sat there basking in the glow of the little plastic cup with just enough ice cream and hot fudge to represent a sweet treat.  He was happy; he clapped and giggled quite joyfully, and we enjoyed watching his slowly work his way through the sundae.

A year ago we started counting between bites, and we started reducing J’s medication.  A year later, with some other adjustments, we are in an entirely different stage of J’s life and development.  Next Monday we go back to the psych, and we start discussing the next reduction in dosage; we also get another weigh-in, and we talk about how those little changes have altered the way J handles the outside world.  He hasn’t changed…he’s very much, and unequivocally the same person he was last June, but that person will now eat at, and behave and enjoy, dining experiences that were far beyond our expectations.

If you see him eating a sundae, though, you can see he’s still there, loving every spoonful of the “wrong” foods…but now he knows how to wait, and how to stop.




The two-week roller coaster ride…

Our life as a family is complicated.  We are used, of course, to the many ups and downs, and the sudden hairpin turns, drops and climbs, and rattling that prevail in our day-to-day existence.  This doesn’t mean that, from time to time, something can’t jar us out of what “our normal” is, and throw us into a spin.

I will spoil the ending by saying it’s a happy one, but I will tell you the rest so that you -who might have, as we do, a complicated existence- can see that there’s no real alone-ness in our individual drama.  It happens to all of us at one point, and not everyone gets the happy ending…

Two weeks ago, while in the midst of cleaning the house to prep for the long weekend, the phone rang.  It was my doctor’s office.  The voice on the other end of the line asked if I’d received my doctor’s message.  It had happened a few days earlier that Dada called from work, the call didn’t come through, there was no voice message in the system and we wondered if he’d misdialed until, lo and behold, the message popped up and the missed call was announced on the screen of our cordless phone.  I guessed that the same thing had happened, and I said “no, I haven’t heard from her.”

When you are told that you need to have a biopsy because a test came out with abnormal cells, and that it has to be done ASAP, your head spins.  I didn’t hesitate (even though my head felt like it was about to fall off,) and scheduled the test for the earliest possible day: last Thursday.  Dada will tell you that hearing “can you take Thursday afternoon off?” is not fun either; hesitation is not our style, at least not when it comes to these things, and he scheduled time off.

Mind you, this is not panic we’re talking about, but rather the realization that biopsies have one of two results, and that action of an immediate type might be necessary.  The one word we both said out loud, just because we had to get it out of the way, was “cancer,” and the next word was “J.”

We were not jumping the gun, succumbing to fear of death or illness.  We were simply planning ahead in case a new type of chaos was about to enter our midst.  Every parent thinks of how his/her illness might affect the family, and we are no different.  The timing for this particular situation was not the most beneficial, but that’s the sort of thing that one has absolutely no control over.  If surgery was necessary, what would happen to J’s routine?

Anatomy books were pulled out; online research was conducted.  Calendars were looked at, and worst-case scenarios were revisited time and time again.  The offending body part was joked about; there was catharsis to deal with the sorrow of even remotely having to deal with this; there was anger at how our bodies can betray us even though we’ve been quite lame in the risk factors we’ve courted over the course of our lives.  TGG was informed, and -during an intense conversation- it was agreed that we’d do our best to not let our anxiety seep into J’s atmosphere.

Mind you, this was not an exercise in hopelessness.  We hoped for the best, but prepared for the worst.  My mother in-law died sixteen years ago of cancer.  The woman I consider my mother died of cancer 21 years ago.  My godmother -Dada’s aunt- was the most recent loss to cancer.  All women who led healthy lives.  All women we valued.  The possibility of a life-threatening illness is not to be taken lightly.

We talked about surgery.  We talked about the risks of it, and the recovery time.  We talked about how a hospital stay might affect J’s sense of the world.  We talked about how a six-to-eight week convalescence might affect my ability to be the point-person for J.  We talked about how he might react to my absence, my inability to be 100% myself until I recovered.  We talked about what would happen if I needed radiotherapy or chemotherapy.  We talked about the pall that casts over everything in a family’s life.  We talked about death.  We talked about how J might process all these things.

The wheels were set in motion to cover as many bases as we possibly could.  Who would help with J from the time he came home from summer school to the time Dada and TGG came home from work.  How much time would Dada take off from work.  How to make every routine easier to follow.  How to manage all the other things J requires that I provide on a regular basis.  What I’d want done if I somehow ended up in a coma.  All these things became part of our conversations in such short order!  Things we’d discussed before, but…not with the possibility of them actually being germane to our situation.

Last Thursday, TGG drove me to the doctor, and came home to wait for J.  Dada met me there.  We went in together, and he sat holding my hand during what felt like an excruciating invasion of my poor, middle-aged body.  We discussed the possibilities with the doctor.  We discussed the risks of this procedure, and how long we’d have to wait for a result.

Then we came home, and we tried to be the people we usually are.  We went grocery shopping.  We cooked meals.  We slept a little.  We fretted a lot.  We worked in the garden.  We went to the library.  We looked at the calendar, and we pondered how soon we’d know.

As I said: the news was good.  I am merely, for lack of a better way to put it, falling apart because I’m aging, not because any part of my body needs to come out.  The doctor called around six P.M. last night, and we both stopped in our tracks when we saw the number pop up.  No appointments to confirm for anyone…just the one call we needed.  The doctor sounded happy; I’m sure giving bad news is not fun for anyone, regardless of how long they’ve been practicing medicine.  The doctor told me to hug my husband and have some wine.  TGG, when told the news, looked as if he’d just realized he was sitting on an anthill.

The kids went to the gym.  We cooked dinner.  We hugged suddenly, and did a little dance.  We were relieved and happy, and thankful.

A few hours later, when the dishes were washed and put away, when we had consumed another chapter of I, Claudius, when we’d had ice cream, I sat next to Dada and told him that I was happy, and yet couldn’t stop thinking of all the people who don’t get the happy phone call.

One of the things that I said to Dada while we discussed all the possibilities we might be confronting was that “for me this is not a problem.  If I die, I die.  I’m really worried about the rest of you, though.  My problem would be over, and yours would be just beginning.”  Until I said that, I had never really understood that this is, indeed, true.  We all want to think that we’re irreplaceable, and -to a degree- we each bring something to the table that others can’t, or -at least- can’t quite like us.

For the time being, I am in the clear.  For the time being, life goes on in the way it usually does.  We know better now.  We are aware of the curve ball.  We know that even if you don’t spit into the wind, something can come back at you.  It’s the banana peel you’re not expecting to step on; it’s the step you miss because you’re in a hurry; it’s the random test that comes out “funky” and you need to go give a piece of yourself to make sure…

At our age, it’s to be expected.  We’re lucky we’ve come this far with no major health issues, and that TGG is now ready to handle J’s needs better than he was in the past, but…

Parents can’t really leave things to chance, can they?  Parents can’t live thinking they WILL be there always.  Parents have to prepare for all these things.  Parents of autistic kids…disabled kids…special needs kids…oh, that’s another story, and sometimes we forget that it’s another story.

We know now.  We definitely know.  Yet another thing I have to get poked more frequently than other body parts “just to make sure.”  Hey…better safe than sorry…