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Archive for the ‘grandma’ Category

Whenever I stop blogging for a week or longer, there is too much to say.  Then another day goes by and more happens, and I start to dread attempting to sift through it all to highlight all the events, which then usually get amalgamated.  So be it.

Sometimes I’m lazy and turn everything into a pictorial.  This will be kind of like that, I suppose.

Last week Jonah had a doc appointment with the pediatric rheumatologist at Albany Med.  I love her and her staff.  They get Jonah right into a room and usually see him quickly.  I’d made sure to buy a whole pile of octopi, so I was prepared with both that and a bag of fruit snacks for Boo.  I called my dad to see if he wanted to come, because Jonah is rarely aggressive at this particular doctor, and I thought Jonah would like to see his “pa.”  So my dad met us there.  But Murphy’s Law being what it is, Jonah came at me at his usual light-speed and grabbed the front of my shirt, nearly ripping it in half down the middle.  Luckily both N and P were there from the school, so they intervened quickly and that was that.  It was enough to send my dad off into the waiting room for the rest of the appointment.  Though I tried twice to convince him to come back in the room, he refused.  His theory is Jonah aggressed because he was there, which may or may not be true…but he was a good boy for the rest of the appointment.

Jonah with his octopus and fruit snacks (and still, the eye shield)

Jonah with his octopus and fruit snacks (and still, the eye shield)
Boo, acting all punk-ass, slouched in the big chair

Boo, acting all punk-ass, slouched in the big chair

It’s a shame my dad did not get to see him for a longer period of time. I think he carries a deep sadness inside him, a kind of trepidation in his gut that simply will not abate.  I understand this, though it’s distressing for me to witness.  Sometimes I wish my parents had adopted another kid or two, so they’d have more grandchildren.

This was the second doc appointment that week, the first being the amazing one I’d talked about last post, so I got to see Jonah 4 times in one week, most of which were affectionate and joyful visits.

Though his retina doc still wants Boo to wear the eye shield, we got permission for him to go swimming with a life vest on (so he wouldn’t go too much underwater), and evidently Jonah was okay with that, even though he has never in his life needed a life vest.  I thought he’d pitch a fit, wanting to go deep under and swim along the bottom as is his preference…but I suppose he was in no mood to look this gift horse in the mouth (even one which forced him to compromise).

I missed him so much after that — maybe because I’d gotten to see him so many times the week before.  So I was really looking forward to yesterday.  When my mom and I were driving down I was in an awesome mood.

But the visit was tough.  Jonah was on the playground when we arrived to pick him up, and though I held my arms out wide for a big hug, he ran straight into daddy’s embrace.  This I can handle and understand; he is with his dad more than he is with me, but still I can’t help wishing he’d run to mama once in a while.

We arrived at the apartment and all seemed okay.  I was proud of myself because once he tried to lash out at me and I deflected his swing “Karate Kid” style, wax on-wax off, just like Daniel-son.  But then he got me good a few minutes later, coming at me with two fists and tightening each on a wad of my hair.  I called out and Andy came running, lowering Jonah to the floor and telling me to come with them (as if I had a choice).  I grabbed each of Jonah’s fists and pushed them into my head so as to lower the pain level and ensure he didn’t dig his fingernails too deep into my scalp.   While Andy was trying to disengage Jonah’s fingers and my mom tried to reason with him (Now Jonah, don’t hurt mommy), I writhed on the floor and cried like a wimp.

Then Jonah scratched up my eyelid (my eyes were closed tight) and bit my left arm, twice, hard, leaving painful welts I can feel today.  His shoes were still on, so I got a few nice hard kicks to the stomach as well.  Finally Andy disengaged him and I ran into the bathroom and closed the door.  If I’d had a sense of humor about it at the time, I’d have taken my camera into the bathroom and shot pics of myself.  My hair looked Halloween-crazy, teased into a mountain of snarls and tangles.  I carefully combed it out and removed a huge handful of hair from the comb,  washed my face with cool water, took a few deep breaths, and came back out to the kitchen.

After that he was mostly okay.  I’d bought him a train video (a double DVD of real trains) and he liked that.  We took Jonah for a car ride (my mom stayed back after I helped her log into Facebook so she could look up some relatives) and Andy gave him an eye drop, and for a while it was peaceful enough.  Later we had to pull over twice because Boo started crying and asking for one of his favorite caretakers at his residence.  Each time Andy got out of the car and hugged him tight, letting him cry.  I breathed deep.

We'd taken the eye shield of to give him his drop but you can see how it looked all gooky

We’d taken the eye shield off to give him his drop, but you can see how it looked all gooky

We have two more eye doc appointments next week – one at the glaucoma doc and another back at the retina doc.  I hope and pray the blood in his eye has abated, and that he will have some sight left in the eye, and that he can swim as he likes for as long as he likes.  My poor Boo.

Someone at his school called me last week to see if I had any questions about Jonah’s progress or anything I was concerned with, and I mentioned the medications and the aggressions-sans-antecedents, and she assured me that it was a fine idea to speak with Boo’s med doc, though I still want to wait until his eye situation is under control.  Also, the pediatric rheumatologist saw no problems with his joints, so if he does not need it for the eye, we may be taking him off the Humira and possibly also the Methotrexate.  So I don’t want to monkey with his psych meds at the same time.

It is hot today and I am smiling just picturing him able to go in that pool – not being left behind as all the other kids get to swim.  I hope he is having a happy day.  I’m still doing well and shrugging off the incidents where he hurts me.  I know he does not mean to hurt his mama.  I know he loves me and I love him and we are all doing everything we can to ensure his happiness, safety, and well-being.

I know we are lucky – especially when I broaden my perspective and think of the rest of this planet.

Every morning I wake up and the first thing I think is thank you.  My new job has an overwhelmingly positive effect on every single piece of what I think, what I do, and what has become most important to me.

Andy may bring Jonah up this week to swim in my mom’s neighbor’s pool.   We just have to borrow a life vest from someone.  I will get in the pool with him and we’ll have a blast.  At least this is what I hope.

“We must accept finite disappointment, but never lose infinite hope.”

~ Martin Luther King, Jr.

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Last Saturday I brought the big-ass pillow with us (the kind that you use as a backrest, with two “arms” on either side) and we successfully got all 4 of us in the car for a ride.  The pillow served to protect the backseat occupant with its bulk and punching-bag-like sturdiness.

The way we accomplished it was to put the pillow in the backseat right from the time we picked Boo up at the residence, and then after his lunch, we told him “we’re all going to the grocery store and grandma’s coming too.”  When he started to protest we reminded him that we’re going to buy chocolate donuts but only if grandma can come.  And by gosh, it worked.  He was even good in the car — he liked the pillow and rubbed it as we drove along.

Boo with his new grey pillow

Boo with his new grey pillow

a soft barrier

a soft barrier

I taped a small conversation we had along the way, though he’s parroting through most of it:

Overall it was a good visit.  At the store Boo successfully navigated the cart politely around other shoppers to the exact location where the beloved chocolate donuts awaited his arrival.  This Saturday we switched our visit to Sunday, so I will see him tomorrow, on Father’s Day, then come home in time to take my own dad out for dinner.

Instead M and I indulged in other plans, afterward ending up driving near Thatcher Park.  What a gorgeous day.

gorgeous day for it

beautiful

the bluest sky

the bluest sky

When we got home M wanted a nap so I took a walk alone to Buckingham Park and took some more pictures, then made some “nature art.”

Always there are ducks and geese, fish and turtles.

Always there are ducks and geese, fish and turtles.

I liked this little boy and took his picture as he watched a goose

I liked this little boy and took his picture at the park

I sat in the grass and I materials that were within reach

I sat in the grass and used materials that were within reach

On Wednesday Jonah had another follow-up appointment with the eye doc/surgeon.  It wasn’t a good visit.  I’m grateful that sometimes it is easier to handle Jonah’s outbursts/aggressions/whatever-you-wanna-call-them.  Sometimes they roll off me like rain washing river-paths along my body, navigating around my heart.  I don’t know why – I wish I could tap into those “sometimes” all the time.  Maybe it had something to do with the rain falling on us all week…

…but, at first, he was good.  Two care-givers from the school brought him up, so I felt more secure knowing they were there.  Still, I came armed with fruit snacks and a yellow octopus I’d bought ahead of time.  He liked both of these gifts.

all, at first, was fine

all, at first, was fine

He even smiled as she guided his head into the eye machine

He even smiled as she guided his head into the eye machine

She told us the pressure in his eye was 18 – nice and low.  She doubted herself and took the measurement again, and got 17.  She looked in his eye and said there was a lot less blood present.  We asked if he could go without the eye shield now but she said no.  This means he’s been wearing the thing for more than a month and has to keep wearing it for we-don’t-know-how-long.  Then she asked Jonah to sit back in the chair and he suddenly freaked, arching his back and standing up, his face melting into anger and sadness.

You can see one caregiver behind him and one in front.

You can see one caregiver behind him and one in front.

And yes, in case you’re wondering, it is awkward for me to whip out a camera at these moments to take a picture (all in the name of photo-journalism).  One more pic, and then I was required to enter the fray.

??????????????????????

Moments after this picture he bit N’s wrist, hard, drawing blood.  (The dude is about to retire; I bet he feels it’s none too soon).

After this we got Jonah down on the floor, where he thrashed, kicked, hit, head-butted…the usual whole 9 yards.  In the interest of protecting the two of us at his feet, I leaned in to take off his left shoe and BAM he thrust forward at the same time and kicked the shit out of my right shoulder and, afterward, scratched me up right between the eyes. (I never wear glasses around Boo anymore).  Eventually it took me, the two caregivers, and even the doc herself to get Jonah under control.

My tears were brief, and all for Jonah this time, whose face crumpled, desperately upset — innocent even in the midst of the aggressions.  The doc hadn’t yet done the ultrasound, which is an important part of the whole exam, but she made the wise choice to put this off, scheduling another appointment for a week away, making this coming Wednesday another anticipated & exciting attempt at examining his eye properly.

Then we somehow convinced Jonah that it was all over, that there would be no more doctor, that we were all done.  N was able to stand him up and guide him out of the office, holding both his arms.  I stayed behind to check out and make the next appointment.  Of course I could feel all  eyes on me, all the seated, (mostly) senior citizens who’d heard the screaming and carrying on, but I’m used to that.  What I’m not used to is what happened next with the elderly lady in line behind me.  I glanced at her and smiled, but she narrowed her eyes at me, the corners of her mouth turning sour-down in disapproval, shaking her head as if to say “what a shame you can’t raise a child who isn’t such a brat.”  Instead of shoving her over like I wanted to, I turned back to the receptionist, got our paperwork and appointment card, and quickly walked away.

Andy just called and said Jonah was good today, both with him and at the residence.  May tomorrow be a happy day too.

Happy Father’s Day to all the fathers out there, all the step-fathers, foster fathers, grandfathers, and people who act as fathers to others….to all the fathers no longer with us, to all the brand new fathers, and to fathers who are sick or alone, and to all the men who decided not to be fathers because they were mature enough to know they didn’t want to do it.

When it is Mother’s Day I usually also give a shout-out to all birth mothers who selflessly made adoption plans for their babies, but I don’t feel the same way about birth fathers.  Perhaps I should, but I just don’t.  At least not about the ones who don’t stick around long enough to see the whole thing through, and I haven’t heard about too many of those.   I couldn’t give a crap about my birth father…who he is, or where he is, or why.  At least my birth mother carried me in her womb and then had whatever it takes to watch as they took me away.

I miss my mom’s dad, who I called “Poppy.”  Jonah’s middle name is Poppy’s first name — Russell.   He died just after I’d gotten engaged to Andy.  I wish I could have known my other grandfather, my dad’s dad, but he died when I was a year old or so.  He was a deputy fire chief in Albany, and was just 57 when he passed away.

I honor Andy as our son’s father, and I’m looking forward to honoring my own father too, by spending some time with him and taking him out to dinner later in the day.

It has been good.  I feel like I can handle things.  And I’m grateful for that.

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I have not wanted to write here.  I am only going to spout lots of depressing crap in this post, so if you don’t feel like reading it, please feel free to skip this one altogether.  It reads too much like a diary and is too personal.  I admit things I don’t want to admit.  I’m this close to deleting the whole damn post.  In fact I want you to skip it.

Sigh.

When my mom and I drove down to visit Jonah last Saturday it was difficult all around.  Andy had taken Jonah the night before for an overnight visit, and Jonah didn’t fall asleep until 5am.  I don’t know if it was the heat that kept Jonah up or what, but as a result Andy was exhausted.  At first the only discernable effect on Jonah was a strangely voracious appetite, asking for one food after another, though later he napped against the window on his car ride.

asleep in the car

asleep in the car

He refuses to have all 3 of us in the car, which almost always means my mom has to stay back at the apartment while Andy and I drive him around.

This time we tried to force the issue, but Jonah wasn’t having it.  My mom got in the back of the car with him and Jonah immediately attacked her, pulling her shirt and scratching up her shoulder.  So as usual she went inside and watched Fox or QVC or whatever the hell on TV.  But she’s sick of it, the whole thing, the making sandwiches for all of us ahead of time and driving an hour and a half every week to bring Jonah gummy bears, chips, special treats, then visiting him for 10 minutes and being left behind.  She’s tired and she doesn’t want to do it anymore, as much as she loves her grandson.  Then, to add to it, Andy and I have been arguing on the car rides recently and sometimes I come back crying, and that pisses her off too.  She yelled at me on our ride back home, demanding why can’t two people get along for 3 hours once a week?

I have no answer.  I don’t know why.  It was never a problem before.

There is so much frustration in everything that has to do with Jonah now.  God help me but sometimes I don’t want to drive down either.  Back home I sit in Jonah’s room sometimes — I’ve got it decorated like a guest room now:

Jonah would destroy all of it with one sweep of his arm

Jonah would destroy all of this with one sweep of his arm

I look at it all and then close my eyes.  I picture the room as we’d prepared it before he was born:  the pale green checkered curtains and light wood crib with matching green checkered bedding.  The toy box, bookshelf full of baby books, closet & dresser full of tiny clothes.  The before.  And the wee baby days when Jonah was sweet, strong, holding his head up early, walking early.  We all thought he was so very healthy, so uniquely intelligent.  I’d nurse him on my lap and balance my own dinner on the edge of the boppy pillow, gazing down at my beautiful son, our eyes meeting with love.

"those were the days"

“those were the days”

“And you know where you were then…”  I sigh too because sweet, innocent, dingbat Edith (Jean Stapleton) of my favorite show has died, “stifled” all too soon, even if she was 90.

Now we don’t know where we are, or what to do to solve anything, and more questions, trouble, worries appear on the horizon of each day.  I have no health insurance for 90 days, and I can’t afford COBRA.  I need to find out what insurance paid for which doctor and what medicine so I can ensure Jonah is still covered for everything he needs through Medicaid disability.  Andy wants to get a divorce now (we are currently legally separated).  He has been saying for some time that he no longer wants me to help him monetarily — not with health insurance, not with car insurance, not with anything — going so far as to tell me (in a moment of hyperbole) that he’d never talk to me again if I paid for any of his expenses.  Maybe the divorce will give him closure; maybe it will make him less angry at me so much of the time.  I don’t know.  But even a no-contest divorce through our mediator is more expensive than I guessed.

And I keep thinking I should make an appointment with Jonah’s psych doctor, talk to her about weaning him off the cocktail of meds which are supposed to mitigate the anxiety and aggression, then put him back on them one at a time to see what works and what doesn’t…but I’m not sure it’s the right thing to do and I’m not sure who can tell me or how damaging it might be for Boo to put him through that.  Plus I want his eye to heal first.  I don’t know what to do.

Andy took him to the eye doctor in Rhinebeck today.  When he called me tonight to give me the daily “Jonah report,” he told me the eye doc checked Boo’s vision in the left eye…and that now Jonah can’t see anything out of that eye at all.  My heart stopped. You mean all this has been for nothing?  The operation…the hell week afterward…the anguish and the aggressions and the all of the everything?

Evidently Jonah can’t see out of his left eye because it has hemorrhaged somewhat and there is still blood in it, blocking the retina, so the doc was not over-alarmed. But Andy says it will take a very long time for the blood to clear.  Does it mean Jonah will have to wear the eye shield for another week?  Another month?  Does it mean that when the blood clears, he will be able to see again?  We don’t know.

We don’t know what is going to happen and we don’t know how to visit with Jonah and we don’t fucking know.  Andy took Jonah for a while today and Jonah attacked him twice when they were having “quiet time” lying on Andy’s bed.  Other than that he was good, Andy told me.  Other than being attacked twice…

On Sunday M and I went to church, a non-denominational Protestant Christian church his co-worker goes to in Schodack.  It was the first time in decades I’d been to anything but a Catholic Church.  I suppose it should be easy for one raised Catholic to go from the seeped-in-ritual Mass to the virtually ritual-less service of this kind of place — at least easier than if it were reversed, and one had to try to unravel all the movements and prayers of the Catholics.  But the pastor spoke about the story of Abraham and how God told him to sacrifice his son.  I started to cry, of course, silently, drawing an immediate parallel to my own life, and I couldn’t stop the tears through the whole service.  I felt like an idiot, though M assured me afterward that it was a perfectly fine place to have tears rolling down your face.  I suppose I should be glad of that.  (Of course, in the Bible passage, as soon as Abraham agreed to sacrifice his son, God changed His mind and let the child live).

My little Boo, the sacrificial lamb.

We gave him up all right, but for what?  He’s been at his residential school for nearly two years, and though he has learned a lot, his aggressions haven’t gone away at all.  If the medicine is mitigating the aggressions, I shudder to think of what he would be like without them.  He is now older, stronger.  Are they simply managing him?  No.  He is learning and he does have good days of joy and peace.  But still he moves lightning-quick to strike and slap and pull hair, to hit, to kick, to hurt whomever is in range, even when he has just been given something he wants – even when he seems perfectly happy just microseconds prior to the aggression.  It’s as if Andy and I have permanent PTSD.  Or just TSD, because there isn’t any Post.  It’s ongoing.  I am ashamed to say it but I am grateful I do not have to take care of my son; I am grateful he is not in my home.

And now I will admit the most shameful thing of all:  sometimes, on the worst days, I become ignorantly envious of parents whose children sicken and die, and for this simple reason: because there is an end to it. 

No, of course I don’t want Jonah to die.  And I am not really envious of parents whose children die.  I know it would be horrible, beyond my imagination or comprehension.  It’s the end to it that I want. 

I just want an end to it. 

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“Likely as not, the child you can do the least with will do the most to make you proud.”

Mignon McLaughlin

It was the first thing Boo asked for when I met him at the car; Andy had just driven up to the eye doctor’s office and I was there, yesterday, waiting for them.  “Octopus?”  he said when he saw me, reaching out his hand.  “Hi, Boo.  I’m sorry.  Mama forgot the octopus,” I answered, cursing myself.  I’ve bought him so many octopi and he destroys or loses them all, or they get so grimy and un-washable we have to toss them away.  But next appointment I’ll be sure to have one at hand.

Jonah and his "octopus."

An older picture of Jonah and his “octopus.”

This is a picture of what Jonah calls “octopus.”  Any kind of those squishy rubbery toys with nub or finger-like appendages will fit the bill – even those that look like caterpillars or balls.  To Jonah they are all octopus.

He was a good boy in the car ride up, and a good boy at the eye doc office, even though we had to wait a good while in a small room.

Daddy played 'push and pull' Jonah's legs while we waited.

Daddy played ‘push and pull’ Jonah’s legs while we waited.

After a while, Jonah started turning his circles in the small area, becoming less patient.

You can see where we've cut the hair along the top of his head to keep it away from his eye shield.   What he needs is a buzz cut for the summer.

You can see where we’ve cut the hair along the top of his head to keep it away from his eye shield. What he needs is a buzz cut for the summer.

We sang “I’ve been working on the railroad” for a while, trading lines, but then he stopped and said “no,” clearly done with that entertainment.  Finally, I thought the taking of the pictures themselves might occupy him. Sometimes it makes him mad, so usually when I take photos I do so surreptitiously.  But this day he enjoyed it.  I took one of him with his daddy and then daddy took one of him with me:

Coming in for a hug with daddy.

Coming in for a hug with daddy.

Sitting on mama's lap

Sitting on mama’s lap

Eventually Andy went into the hallway to tell someone that Jonah was fixing to have a tantrum (though he really was still being good) — we knew the longer he was left in the room, the harder it would be for the doc to examine him once she arrived.  Soon afterward the doc appeared.  She had me take all the tape off his eye shield and remove it altogether; I hoped against hope we could leave it off for good this time.  But his eye still looked bloody and the pressure was too high (around 32) – both of which things, she told us, were to be expected.

She put two kinds of eye drops in his eye, one of which stings, and did an ultrasound with blue goo all over a wand against his closed eye.  All of these things would bother an adult, let alone a child of 11 with autism.  But my little trooper was so good – he patiently let her examine, shine lights, and more while Andy and I waited anxiously.

She said the ultrasound looked like things were much better, and she wanted him to have two more appointments, a week apart.

Unfortunately, we had to put the eye shield back on.  Jonah seemed resigned to this and happily gave both of us kisses when it was all over.  I needed to return home to work, but Andy brought him to see grandma, and then back to his residence, without much trouble at all.

I was so proud of my Boo.

Thank you to all of you who sent prayers and well wishes through comments, or through my facebook page, or by e-mail, or live and in person, or in your hearts.  Jonah loves you all, unconditionally.  Mama promises.

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And so it came to pass that for 6 nights and 7 days following his eye operation, Jonah and his mother and father moved into Grandma’s house.

The story is too long to tell and, by now, amalgamated into one long, blurry, mess of exhaustion, irritation, frustration, worry, and a million rational & irrational emotions spanning the gamut of the human condition.   But I can provide some idea of the experience, sans hyperbole.

Each day Jonah attempted to remove his eye shield at least five times and usually 10 or more – and since it was vitally important for him NOT to touch his eye, each attempt required sudden and swift action, whether during day or night, in the car or the bathroom, while he was eating or running about or watching his favorite parts of  Willy Wonka and the Chocolate Factory.

And each swift action provoked Jonah, usually sending him into a rage whereby injury was inevitable and often severe.  These injuries occurred most often to Andy, since he was the only one with the strength to hold Jonah down while I cleaned the eye shield and re-taped it all across his face, attempting to close off any possible entry points for Boo to slide his finger beneath the tape and itch his eye.  Not to mention there were two different eye drops we had to give him, one twice a day and one four times a day.  Andy had borne a hole in the middle of the shield so that we could sometimes manage to insert the drops without having to undo all the tape and re-apply it again.

OLYMPUS DIGITAL CAMERA

We quickly discerned that any of us was unsafe sitting in the backseat of the car with Jonah, after he bit my mother’s arm 3 or 4 times, drawing blood, and, on a separate occasion, attempted (partially successfully) to rip out two handfuls of my hair while somehow simultaneously shoving his foot in my face.  Why not give up the car rides altogether, you ask?  Because the car rides were among the only time-eaters, one of the only ways to give Jonah any semblance of peace.  A thousand times a day, at least, he begged for car ride?  car ride? car ride?  wanna go see train?  train?  car ride?  wanna see train? car ride?  wanna go car ride?  wanna see train?  car ride?

I promised no hyperbole: a thousand times a day.  By Friday I decided to count, and got up to 87 in the first 15 minutes of the day (our days began whenever Jonah awoke, usually around 6:15am) before giving up.  It was maddening, the requests.  At times we temporarily lost the ability to feel any sympathy at all for Jonah in the midst of his incredible ability to spew forth repetitive phrases ad infinitum.  Oompa oompa?  he’d ask if he wanted Willie Wonka, which was our favorite request, for it meant we could sit or lie down with him while he watched.  He has no interest in the movie whatsoever until Augustus Gloop falls into the river of chocolate, but he adores the Oompa Loompas and most especially the end of the movie, where Willie Wonka yells at Grandpa Joe:  “You STOLE fizzy lifting drinks!  You BUMPED into the ceiling, which now has to be WASHED and STERILIZED, so you get NOTHING!  You LOSE!”

Unfortunately it was also his least requested thing.  In a vague order of repetitiveness, I’d say his requests were most often:  car ride?  wanna go see train?  breakfast san-wich?  take band aid off?  black donut?  lemm-a-made?  grandma?  all done?  (when he was being held for aggressing), and a variety of other things, usually uttered in rapid-fire desperation, for what he really wanted, I am sure, is to have that damned eye shield gone and his routine re-established.

On each car ride Andy played FLY 92.3 on the radio, which Jonah loves. Music?  he asked if it was not on, or loud enough.  This meant we were treated to the same 15 songs or so played over and over and over- YAY!  More mindless repetition.  I got a particular kick out of Taylor Swift’s song about the nostalgia of feeling 22.  I mean, isn’t that how old she is now?  Once I slipped Guster’s Easy Wonderful in the CD player – but within 4 songs Jonah was asking for radio.  I’ve lost the ability to guide my child’s taste in music – but then, what parent doesn’t?

We were at the train tracks in Voorheesville so often that we met all manner of railfanners.

OLYMPUS DIGITAL CAMERA

These individuals come from all walks of life and sometimes far away locales to watch (and often tape) the trains passing by.  They explained to us the pattern of the four lights, two on each side of the tracks, and what they meant.  Four reds was bad business and usually meant no train was coming.  We learned quickly not to say “four red lights” or anything even close to it within earshot of Jonah.  He often began begging for green light the moment we got in the car for a ride to the train.

that way?  he would ask, pointing in the direction he thought the train would be coming from

that way? he would ask, pointing in the direction he thought the train would be coming from

One day I snapped a picture of him actually smiling a little after we were lucky enough to see two trains!

note the ridiculous amount of tape all over his face in our attempt to keep him from touching his eye

Note the ridiculous amount of tape all over his face in our attempt to keep him from touching his eye

God forbid we had to detour from the exact route Jonah was used to while driving to the train.  One time the local convenience store (Handy Andy’s) was in the process of burning down, smoke reaching with fat, grey, angry fingers at the sky.  We had to go the wrong way, and there was hell to pay.  That way!  That way!  Jonah screamed, oblivious to the burning building and emergency vehicles everywhere.  To him it mattered not that flames were literally blocking our path; the only thing of consequence was that his route had been inexplicably disturbed.

One day he “eloped” (ran away), bursting out my mother’s front door, sprinting halfway down the street before Andy could even get out the door after him.  Andy had to drive his car halfway down the street and jump out in order to catch Boo, track-star of the year.  During the initial drive home from the surgery we had to pull over to replace the eye shield for the first time, and some passerby must have called 911 because soon a cop arrived to ask what the situation was.  Hmmmmmm…where to begin?

Sleep was elusive and usually impossible, especially for the first two nights.  My mother, bless her, slept on a blow up mattress downstairs so that Andy and I could sleep in her bed, each of us on either side of Boo, taking turns watching over him – parent-hawks protecting him from hemorrhaging, from the complete loss of the eye itself.  When there was sleep it came in quick REM lucid dream time, frightening images and nonsensical mazes which were difficult to shake off once awoken.

Lest I get any further caught up in the excruciating minutiae of every incident (and believe me I could write on and on), suffice it to say that by Monday (the day of Jonah’s follow up doctor appointment), there were four individuals on the edge of something frighteningly close to insanity and nearly at one another’s throats.

One final, comedic coincidence occurred just before we left to drive Jonah to the doctor; my right eye was bothering me all morning and when I looked into the mirror, its pupil was fully dilated while my left eye’s pupil was dilated normally.  So after Jonah’s check up, the doc took a quick look at my eye as well and, after an appointment with my own eye doc later in the day, it was determined that I’d gotten some of Jonah’s drops into my eye, causing the uneven dilation.  I’ve had quite enough of eye problems, thank you very much.

I’m bleary eyed (no pun intended) and ended up telling far more of the story than I thought I’d even remember.

The best part of the whole week was snuggling in bed next to my sweet sleeping son, watching him breathe deep, stroking his hair, his warmth and innocence — enjoying the mama moments I no longer can have.  That alone was nearly worth all the exasperation of the week.

When next I write it will be to tell a far different tale – a vastly better tale of redemption, miracles, and dreams come true.  For, as Guster promises us, “there’s a twilight, a night-time and a dawn” — and my own dawn has finally come.

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Never deprive someone of hope; it might be all they have.
~ H. Jackson Brown, Jr.

Early tomorrow morning Andy is driving Jonah up to Albany for an operation to remove the Retisert implant from his left eye.  (Turns out I’ve been spelling it wrong for a while).  I know that the chance of Jonah’s eyesight improving in that eye is slim, and we hate putting him through yet another eye operation, but still I have hope that it will help him to have the implant gone.  It is at best a foreign object doing nothing, and at worst something which causes his eye pressure to rise – and maybe even causes him pain.

Tomorrow and the next day will be a time of special vigilance over Jonah, to care for him when he (almost always) gets sick after awakening from the anesthesia, to ensure he doesn’t get any of his little fingers under the eye shield, and to keep him pain-free, occupied, and as calm as possible.  Andy and I and Jonah will all stay overnight at my mom’s, so we can take turns watching him and caring for him.  At the very least Jonah’s constant cries for “Grandma’s house?” shall be fulfilled.

On Saturday when my mom and I drove down to visit Boo, our spirits were somewhat lifted because he’d had a good week, for the most part. Again the pendulum swings without reason; after his eye heals, I would like to contact Jonah’s psych doc and titrate him off his meds, then start over with one med at a time.

Saturday Andy was very tired (he struggles with insomnia).  I tried to step up and help out more than usual so he could lie down.  I gave Boo his bath and offered him small sips of his beloved black soda.  I played straws with him on the floor, which basically means I make little house-like structures with colored straws and he gleefully knocks them over…or, in another variation, he dumps them all over the place and we sing “clean up, clean up” while he picks up two or three straws and I pick up the other 22.  Sometimes he’ll help me sort them by color, but he wasn’t having any of that this day.

We went outside to blow bubbles —  I hold it?  — Jonah asked after I blew a stream of bubbles into the air.   I put bubble solution on the mini-wand and handed it to him, and he blew way too hard and spazzed the solution all over himself.  He didn’t seem to mind; he simply handed the wand back to me and watched some more of the rainbow orbs fly past him into the air.

Then I got on Andy’s computer and showed Jonah the video of him swimming in a Cape Cod hotel pool when he was seven.  Interestingly enough, Jonah is at his heaviest in the video (and has moon-face from steroids given to him to combat the the very beginnings of all these problems with his left eye).  At any rate, it had been a while since I showed him this video and he shrieked with delight, watching himself swim.  I asked him if he wanted to watch the video of him singing Guster, but he kept asking for the swimming video, so we watched it 8 or 9 times, each time Jonah screaming in excitement.

Finally, I entered “train” into the search box and, thanks to all the rail fanners, there was a plethora of videos of trains approaching and chugging along.  We found one of a nice, long train….the approach, the gate lowering, the lights flashing, the rhythmic noise growing louder and louder, and the cars passing by, providing Jonah with a visual ecstasy I don’t quite understand but can certainly appreciate.  Instead of shrieking, this time he stood mesmerized, his eyes following each car, never growing bored even though this particular train was at least 100 cars long.  A few of these videos kept Boo occupied for quite some time – all in all, enough for Andy to have a quasi-nap (if all the screaming and shrieking didn’t wake him).

And so Saturday served, also, as an early Mother’s Day for me and my boy.  I was a little disappointed that his teacher at school didn’t have the kids make something for their moms, but at least I got to spend some fun time with him.  And tomorrow and Wednesday I’ll be spending all my time with him, gladly, even though it will likely be exhausting and scary.

I hope the operation goes well.  I hope Jonah doesn’t get too sick.  I hope we can keep him pain-free.  I hope his left eye’s vision is somewhat restored, or at least not damaged further.

I hope.

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“The “D” is silent.”  ~ Django, in the 2012 movie Django Unchained.

So I just saw Django Unchained, finally, and enjoyed it so much I watched it twice.  I can’t believe it lost to Argo for the Oscar, which I also saw but thought was a good (but lesser) movie.  I’m not a huge Tarantino fan and am glad I went into it without the knowledge that he had written and directed it, because I would have been somewhat prejudiced against it from the start, though it should have been obvious he directed it: the violence, the structure, and all that ignoring of plot holes and logic.  It didn’t matter.  I didn’t even mind the violence…it served a purpose, and as far as folks criticizing the word “nigger” being overused, it was set, after all, in the antebellum era before the Civil War.  It was true to its time, for the most part.  I loved it.  Perfectly cast, too.

Djonah has also acted in an unchained manner of late – he even “eloped” (which is the autism world’s word for running away) on Saturday when my mom and I visited and we were eating lunch at Andy’s apartment.  With no warning he ran at the screen door, flung it open, and ran full speed down the short-ish street right toward the 55-mile-per hour road it meets.  Andy acted lightning fast, and thank God he’s been working out for months now because he caught him easily.  I would hope that with my new exercise regimen and super-power momma instinct, I also could have caught him, but luckily I didn’t have to try.  Left unchecked, Djonah would certainly fly, headlong into the street, I’m sure, powered by an inner need to escape something inside him which would ignore all danger of speeding cars on the road.  This eloping is new; he has only done it once before, and on the school grounds, where he is trapped on all sides by fencing.

There are other new things amiss with Djonah.  He is having multiple aggressions every day (which has always been cyclic) but he has had zero aggressions for something like 2-3 weeks prior to this – and also, now he is exhibiting signs of OCD (obsessive-compulsive disorder) we’ve never seen before, touching doorknobs 100 times and spinning ever-increasingly in circles, round and round.  This is all different. His nurse and his behavioral specialist are both really concerned.  There is also some blood in his left ear; it isn’t pouring out of him but when we gently clean it there is blood on the swab.  I have to call today and see if I can drive down to meet with Djonah’s doc and talk to her about what to do about all these things.  After talking to other moms in similar situations, I think I want to take him off all his anxiety/aggression meds and then put him back on them, one at a time, to see what is working and what isn’t.  Right now he is on such a cocktail of meds that adding and subtracting meds at this point is just a guessing game.

On top of all this his eye operation is a week from tomorrow.  I can’t see that helping any of these behaviors.  Things will almost certainly get worse before they get better.

Also on Saturday, he attacked Andy twice in the apartment.  Andy managed to get him onto blue bed and hold him, and I came in to lay across his legs so he wouldn’t back-kick Andy in the kidneys.  Djonah wept and wept…in frustration, anger, I don’t know what, drool and snot and tears all mixing together in a pool of desperation on the bedspread.  It took a long time to calm him down.  I tried singing softly, shifting my body so my face was near his, and he’d jut his neck out toward me as far as he could and open his mouth, gnashing to bite me.  I recoiled as if facing a cobra.  I kept kissing him, on his legs and feet and back, wherever I could reach safely, telling him softly, over and over, “I love you, Boo.  God loves you.”

Eventually he was able to calm down, breathe normally, and relax his lithe body.   He ate his lunch and took his bath and wanted his car ride.

settled down somewhat

settled down somewhat

People sometimes ask me how he is doing and I never want to talk about it.  I direct them to my blog sometimes, because I can’t live it and talk about it all the time too.  A defense mechanism in my mind kicks in so I can live a life without a constancy of terror and anguish, helplessness and envy.  And yet I have to balance this with the necessity of advocating for our son and ensuring he is getting the care and medication that will help him.

A friend called me last night to vent because her teenage son is being very rebellious.  All I could do was listen.  I know nothing of teenagers but for memories of my own teenage years.  I wish I could have helped her more.  I sent her a list of books he may enjoy, and she may enjoy them too, for they are both readers and in my literature-loving mind, a good book is damn near a cure for anything that ails you.  If nothing else it provides escape.  Here is what I recommended (most of which I have read but some I have not and recommended based on reviews):

Fiction:

Looking for Alaska by John Green

Divergent by Veronica Roth (inspired by The Giver, I’d say)

Matched by Allie Condie

Every Day by David Levithan

I am the Messenger by Markus Zusak

Boy21 by Matthew Quick

Don’t Care High by Gordon Korman

The Chocolate War (and its sequel) by Robert Cormier (all his books are great)

The Curious Incident of the Dog in the Night-time by Mark Haddon

Brave New World by Aldous Huxley

Non-fiction:

Me Talk Pretty One Day by David Sedaris (really funny)

Life Without Limits by Nick Vujicic

One Man’s Wilderness: An Alaskan Odyssey by Dick Proenneke and Sam Keith

Black Like Me by John Howard Griffin

The Wave by Todd Strasser

A Heartbreaking Work of Staggering Genius by Dave Eggers

Books always help me.  Writing always helps me.  Both are ways to immerse myself so completely that I’m in a zone from which I cannot be awoken easily.  They are meditations. 

I pray and hope and will Djonah to get better, for all of this to subside, for the wheel to turn so he is not squashed at the bottom but rather riding on top – happy in the warm weather – and soon, swimming again.

But there are good things on the horizon as well.  My mind is feeling calmer, and happier –and the changes I’ve made in diet, behavior, exercise, and what I put into my body in general have given me more energy and a better perspective on everything I see and all I encounter.

In the midst of the Djonah turmoil, somehow, I am feeling very, very blessed and grateful.

Auf Wiedersehen…

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If your head tells you one thing and your heart another,
before you do anything, you should first decide
whether you have a better head or a better heart.

~ Marilyn vos Savant

Undoubtedly my heart is better than my head, but I’m not sure if that’s saying all that much.  Oftentimes I extinguish the embers attempting to flare into emotions simply because I don’t want to feel those emotions.  And other times the embers are fed by a circumstance or song, and they flicker and come aflame unbidden…causing anything from tight-jawed pain to tremendous joy.

Yesterday Jonah was a happy kid.  My mom waited in the car while Andy and I went to the residence, and Boo was standing excitedly by the front door.  I had brought his “octopus” with me, but a small red-headed boy hugged me and held out his hand for the toy, so I dropped it in his palm, smiling as he ran off happily to play with it.  Jonah didn’t mind, and I can always buy him another.  Jonah’s more concerned with where grandma is, and whether or not there will be delicious things to eat.  We went into his room to gather a windbreaker, and another kid came running in to jump & land on Jonah’s bed.  Another kid was in Jonah’s window because he loves to look out at the playground. Party in Boo’s room.  Jonah tolerated it nicely as we apologized for the handfuls of hair incident from the other day, and asked about his morning (which, they told us, was good).

The caregivers who had endured Jonah’s attack were kind, smiling and telling us Jonah is good far more often and causes smiles more than frowns.  My heart swelled so that tears came into my eyes.  Also he has been doing something new; whereas he used to take his shower and go straight into his room to lie down, now he is coming out into the main living room area to walk circles or sit on the couches with the other kids.  I am glad he seems to be moving toward some sort of socialization, even if the kids can’t really talk to one another (Jonah is one of the most verbal) and don’t actually play with one another in a traditional sense.

He can easily outrun me to the car (Andy could probably catch him, but I just started walking and running, and I tire easily).  There he found his precious grandma, but wanted mama in backseat?  After I’d gotten in the car and Andy had gotten in the driver’s seat,  Jonah turned to me and said “need help?”  I asked him what help he needed and he pointed to his shoulder.  I noticed Andy had forgotten to secure Boo’s harness to the clips on the back of the seat and I secured each clip, in awe of Jonah noticing this mistake and actually asking to be strapped in more securely.  I gave him a ScareMeNot and he stared out the window, watching for deer and the ducks in the pond as we drove off the property and to Andy’s apartment.

I'd brought Valiant Valerie along (a ScareMeNot) and Jonah held her close as he looked out the window...

I’d brought Valiant Valerie along (a ScareMeNot) and Jonah held her close as he looked out the window…

(This was supposed to be a photo of Jonah kissing Valiant Valerie, but the camera was still set on video, so it’s a one-second video instead).

After lunch and a bath, Jonah asked for grandma stay here? and Andy and I brought Jonah to transfer station. I’d queued up Guster’s Easy Wonderful CD but Andy asked him if he wanted Gunther or radio.  Jonah chose radio, which slightly annoyed me because I know Jonah loves Guster and would have been fine with it if we’d just put it in.  Andy calls Guster Gunther because E (who comes with J to bring Jonah to most of his doctor appointments) always calls them Gunther by mistake.  Music on the Top 40 radio stations all sounds the same to me.  I guess I’m a music snob.

Were I in charge of the music my boy is exposed to I’d play all kinds of different stuff, including Guster: all the Beatles CDs, some traditional children’s songs, Marlo Thomas’ Free to Be You and Me, Elton John, Kula Shaker, Crosby Stills Nash & Young, Billy Joel’s Glass Houses, songs from Sesame Street, Mozart & Tchaikovsky, 80’s pop music, They Might Be Giants, Simon & Garfunkel, the Grateful Dead, the Hilltop Hoods….all kinds of different things.  And I’d never, ever, ever, ever, ever, ever, ever play that dumb Taylor Swift song.

I suppose it doesn’t really matter, so long as he’s not listening to Gangsta rap or death metal.

Jonah’s like me in that his hair grows fast, and already he needs another haircut.  We’d like them to give him a buzz cut at this point, for it is getting to be warm, and that way it’s out of his face and will grow back in soon enough.

I’m anxious to take Boo on walks in the woods, push him on the swings, watch him dive into the pool, smile at his widened eyes when train comes toward us and passes by.  I want to take him to a Guster show and not have to leave.  I want to be with him on the beach, watch him cavort in the ocean and run barefoot along the jetties.

Yesterday M’s daughter J was here; we held hands and ran together to the park, where we kicked and bounced a beach ball around, and went on the slide together, and chased one another, laughing.  M and Jack-dog followed behind while J and I goofed around on the playground.  Later we walked, just J and me, to Stewart’s, where I let her pick out ice cream and a surprise snack for her daddy.  I looked around me and realized people figured I was her mother.  For a moment I knew what it was to be in public as “the mother” of a “normal” kid.

It felt, well….normal.  Which in my world is pretty damn strange.

I have two blooming multicolored tulips in my yard now, and I’ve re-stacked my stone cairns.  Time to oil my Buddha tucked into the bushes out front.  Time to make nature pictures in the woods.  Time to rejoice in the springtime.  May 1st is coming – my favorite day of the year, because it slams the door on winter with the satisfying sound of finality, and who doesn’t love that?

“Ha ha ha ha
People are laughing
Children are singing
Come join the dance

And the walls around us
Which we kept at such a cost
When we turned around
Came tumbling down

Ha ha ha ha
She can’t stop laughing
He can’t stop singing
First day of may!”

First Day of May by James Taylor

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“If you can’t make it better, you can laugh at it.”
~ Erma Bombeck

There remains inside me, despite every effort to squash its useless purpose, an ugly envy when I see beautiful photos of families – husband, wife, child/children, smiling, caught in a snapshot of happiness.  The knowledge that these parents may tuck their little ones in at night, or cheer them on at sports games, or watch them proudly in the spelling bee.  The realization that they have the opportunity to guide and teach and comfort their kids, to gather together in their own family unit, tucked into time itself with undying memories.

Of course this is foolish, imagining idyllic problem-free lives.  It is never so.  Behind every smile is pain, and in every life falls the rain of sorrow.  Yet I have but one child, too far away from me, and I am unable to guide him anywhere against the wilfulness of autism itself which cages him in its unrelenting grasp.  Jonah’s father is gone from me – and as necessary as it was, it is too often cause for feelings of inadequacy, of failure, of loss.

The mornings are hardest.  Awakenings.  In sleep we are all embraced by the quiet wellspring of a dark, unknown possibility and promise. Saturdays are question marks, when every week my mother and I punctuate the ride to Boo with silent queries and fervent prayers.

When we first picked him up at his residence, he was happy and excited.  The caregivers told us he ate two breakfasts and was behaving well.  He was calm on the ride to Andy’s apartment.

Jonah and his "octopus."

Jonah and his “octopus.”

Just a few days ago I phone-conferenced in to his IEP (individualized educational plan) meeting.  I heard encouraging news about his progression in verbal communication – he is learning to say “I like” and “I see” (etc.) to begin sentences, instead of just “I want.”  He is not yet generalizing this beyond the classroom, but I am confident he will.  They tell me he is most anxious (and therefore likely to aggress) when he is in large crowds or feels encroached upon by someone sitting too close – which is most likely why he only tolerates anyone in backseat for the short duration of the ride to Andy’s apartment.  Often he will ask for daddy in backseat, but I can’t drive Andy’s stick shift and neither can my mom.  I suppose I should learn.  How hard can it be?

They told me he has a rash on his penis which they are treating, and they are beginning to recognize it as a recurring cyclic seasonal thing.  He will have been there for two years in August.

The mind reels.

This last Saturday brought change, as Saturdays often do. He ate lunch on his garbage can perch, and had his bath.

???????????????????????????????

Whereas usually Jonah will ask for mama to ride with daddy to transfer station, instead he held his palm up to me when it was time to go.  No mama, he declared.  Mama stay here.

I smiled weakly and stayed behind, briefly playing with Andy’s landlord’s kids, Manny and Isabella.  They are cute kids, and Andy’s landlord looks like George Clooney:

I call him George

I call him George

Sweet Isabella with Protector Patty, a ScareMeNot.

Sweet Isabella with Protector Patty, a ScareMeNot.

I pulled Andy’s copy of Clan of the Cave Bear off his bookshelf and read a few pages about Brun and Broud, Creb and Ayla, until they all returned.  Jonah came flying in the door, and my mother and Andy said he did not want to come back to the apartment at all.  He wanted park.

We were all glad, since usually he only wants car ride. But once again he wanted no mama.  My mother felt so bad for me.  “Mama is coming too,” she told him.  “No…no,” he answered.  My mother decided to be the one to stay behind anyway, and I brought along some root beer for Jonah to sip in the backseat of the car, as incentive for him to let me come along.  He was not appeased.

OLYMPUS DIGITAL CAMERA

“I hold it,” he declared as soon as he was strapped to his safety harness.  Andy opened the can and poured most of it into a cup, which he gave to me, then he handed Jonah the small can with just a bit of soda inside.

Laughing, Jonah chucked it at us, splattering the dash and control panel of the car’s radio.

sticky mess

sticky mess

I cleaned up while Andy removed Jonah from the car and took off his harness, telling him “You blew it.  No park.  Quiet time.”

looks like an arrest

looks like an arrest

After this we went back inside, where Andy and I got Jonah to lie down on blue bed and each of us lay on either side of him.  He was quiet for a few minutes and then turned to me and held out his little hand.  I kissed his palm.  He lifted his leg out from under the covers and I held his little foot and kissed a toe.  More kiss?  he wanted.  Of course more kiss.  I kissed each toe, his ankle, his fingers…the softest place on his neck.

“I love you,” I  whispered.  “I love you.”

And then it was time for my mother and me to drive home.

Yesterday Andy asked me to play an online Texas Hold’em poker tournament he had won an entry into but could not play (actually he’d had to place high in several tournaments to get into this one).  There were 750 people in the tournament and nine prizes, the top prize being either $2,000 or an entry into the World Series of Poker in Las Vegas (which usually carries a 10k entry fee).  After two hours of playing I came in 6th place and won a whopping $40.  I do like to play and am fairly good at it.  It was a fun distraction to my weekend.

The world events of this past week are a shadow-cloud over my microcosmic thoughts.  Too much too much.  My therapist tells me not to listen, but it is impossible not to hear.  While I was sitting on the steps outside his office the day before, reading and waiting for my appointment, a blonde woman with a gold cross necklace asked if I minded if she set her coffee cup down.  I told her it was not my building and even if it was, of course she could.  We chatted a bit as she pulled out a cigarette and lit it, telling me things about herself – she was from NYC.  She didn’t like Albany.  She had been mugged twice.  A man from the Troy Record newspaper approached us to do a “man on the street” interview about the Boston marathon explosions.  I politely declined, but the woman was all excited to talk and have her picture taken for the paper.

“It’s those damn Moos-lums,” she declared.  “We have to ship them all back to their own country.  (And what country would that be? I thought to myself).  “It’s going to keep happening,” she added with certainly, pointing her cigarette at the dark-coffee-skinned interviewer.  He grew visibly uncomfortable and told her he could not use her comment about the Muslims.  She was unhappy about this, accusing him of being part of the liberal media agenda.  When she walked away, he and I talked for a bit.  I could tell he wanted to interview me instead, and again I declined, saying “I think it’s sad that the only time we seem able to be able to come together in solidarity is when there is terrorism or disaster.”  He nodded in understanding, and I stood up and went inside.

Boston.  Texas.  Seattle.  Denver.  China.  India. Japan…North Korea…etc. etc. etc.  The suffering is everywhere now, every day.  If nothing else, it helps remove the envy I spoke about at the beginning of this post, replacing it with gratitude and sympathy.  God help us all.

“One way or another, this darkness got to give.”  ~The Grateful Dead

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“Never be afraid to trust an unknown future to a known God.”
~ Corrie Ten Boom

On Saturday Boo was his reliable, predictable self, and yet he never ceases to amaze me.  Andy had taken him overnight and so he was there when we arrived.  He had been asking for “grandma” and “mama” all morning, yet when we arrived he was more interested in the food my mother had brought him.  This time she’d added a new item:  a small container of mini-Oreos.  Jonah’s not the type to eat things in what others might consider a “logical order” – food, then dessert.  His banquet must be presented all at once, and though he did eat most of his sandwich, the Oreos were a big attraction.

Jonah enjoys the stuff in the middle — the meat and cheese inside the bread, his fingers first tap-tap-tapping against the sandwich and then, usually, discarding the bread altogether to get to whatever is the middle.  It was no different with the Oreos.  He held each mini Oreo carefully in his little hands and pulled it apart, scraping the creamy white stuffing out of the middle, then discarding the two outer cookie pieces.

cookie fun

cookie fun

He gleefully attacked his lunch with fervor.

cookie mouth

cookie mouth
YAY!

YAY!

We are waiting for warmer weather but offered to take him to the park anyway, or the train, or the Poet’s Walk.  When we asked him if he wanted to do any of these things he answered “no,” sweetly but firmly, to each one.  “Transfer station?” he asked, which is a recycling facility where Andy takes his paper and cans, etc. every Saturday.  It is car ride Jonah wants, and he almost always says “grandma stay here.”  I think it’s because he wants the whole backseat to himself.  So my poor mother is stuck watching QVC and Fox News on Andy’s TV until we return for a bath and then another request for car ride.

I found out about an open swimming program at Bard College on the weekends, but Andy seems reluctant to take him, lest he throw a fit.  I want to try, though.  Perhaps M will come down with me some Sunday and we can take him.  Jonah loves the water so much!  I was ready to book a 3-night stay in Cape Cod this summer, to take him to the ocean with Andy, to watch him frolic in the waves, to hear his little voice cry gleefully for ocean!  It is a word we do not use, for if we cannot take him it would be mean to plant the idea in his head.  Now it looks like I may be hard-pressed to take him at all.  I will find a way, for I am a determined mom and want to give the gift of ocean to my Boo.

I would like to end this post with some quotes and passages upon which I have been reflecting.  There are discoveries to make, and self-improvements to make, and faith to build.  There is self-awareness and I am attempting to step away from myself and see myself as others see me.  I am looking deep into a metaphorical mirror to ensure I can remain true to myself and to everything I have ever wanted to be…a great mother, a loyal friend, a good person.  Most of all I am seeking to be kind to all I encounter, to forgive, to understand (and not only to be understood),  as in the prayer of St. Francis, perhaps my favorite prayer/hymn.  I am praying it with everything inside me and turning things over to the certain God in which I believe.

Lord, make me an instrument of your peace.
Where there is hatred, let me sow love;
where there is injury,pardon;
where there is doubt, faith;
where there is despair, hope;
where there is darkness, light;
and where there is sadness, joy.

Oh Master, grant that I may not so much seek
to be consoled as to console;
to be understood as to understand;
to be loved as to love.
For it is in giving that we receive;
it is in pardoning that we are pardoned;
and it is in dying that we are born to eternal life. Amen.

– – –

“Experience: that most brutal of teachers. But you learn, my God do you learn.”

~C. S. Lewis

– – –

Matthew 5:44-45 says, “But I tell you: Love your enemies and pray for those who persecute you, that you may be sons of your Father in heaven. He causes his sun to rise on the evil and the good, and sends rain on the righteous and the unrighteous.”  Thus, now go on your knees and pray for the person who has hurt you.
– – –

“To enjoy good health, to bring true happiness to one’s family, to bring peace to all, one must first discipline and control one’s own mind. If a man can control his mind he can find the way to Enlightenment, and all wisdom and virtue will naturally come to him.”

~ Buddha

– – –

“Silence is one of the great arts of conversation.”

~ Marcus Tullius Cicero

– – –

“To thine own self be true,
and it shall follow, as the night the day,
thou canst not then be false to any man.”

~Shakespeare

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