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Archive for the ‘trains’ Category

I see Jonah in bits and pieces.  He is behind me on a car ride, he is requesting The Jungle Book, I’m starting the movie, I’m pouring him cranberry juice.  Sometimes I’m trying to get a photo.  In most of the photos he’s in the backseat of the car or sitting at the table or on the floor, eating something.  He almost always wants to nap but only wants mama about half the time.

     

Today when I asked if he wanted me to lie down with him for a nap, his answer was unambiguously no.  And when his answer is no, my visit is short.  Every other week my mom is with me.  I used to have people join me on my mom’s Sundays off, but not so often anymore.  Andy always manages to visit with Jonah several times a week, no matter how tired he is or how much he has worked that day.

The beginning of November was sunny and warmish, but lately the days are short, cold. Dreary.  Seemingly always raining, dark, drizzly…we even had snow already, which I prefer, if it’s going to be cold anyway – and most days I am tired, often depressed.  It’s hard to write about Jonah when there isn’t much going on where he’s concerned.  I guess Jonah’s ambivalence or indifference toward me is better than an attack – a thousand times better.  I should be grateful for it.  How quickly I forget how bad it can be.

Props to his teachers and caregivers.  Sophia, his head classroom teacher, sent me a great photo of she and Jonah in the classroom during their “Charlie Brown Thanksgiving” celebration.  Just like in the TV special, they feasted on toast, pretzels, jelly beans, and popcorn (which I’m sure the kids loved) and I guess Jonah had a blast.  Could we ask for a better, more energetic, patient, creative, and loving teacher?  Not in a million years.

I love seeing Boo happy. I wish I could stand behind a two-way mirror and watch him in class, or at the rec center, or hanging out at his residence.  Videos and photos are the next best thing.  One of his caregivers at the residence even texted me two little videos one day, of Jonah jumping around on a giant beanbag and laughing his head off.  I don’t know how to move the video from my phone to the computer, though.  Maybe I’ll ask the youngster at work.

I’m tired.  Maybe I’m not getting enough iron, or potassium, or protein.

Sometimes the days seem lengthy and meaningless, and there are days I go to sleep old-lady-early.  I forgot to take my meds a few different days recently, and paid for it dearly.

Thanksgiving was as successful as Thanksgiving gets, though, and believe me I’m grateful for it.  Jonah and Andy made it up to my mom’s house safely and without incident, and when we took our car ride, we saw a long train within minutes.  My mom made delicious dinner and packed it up for all of us just like she’s been doing for 5 years or so now.  Next year I want to try making Poppy’s dressing.  (My grandfather, who died in 1999).  His dressing was legendary and time-consuming to make…my mom doesn’t attempt it anymore and I miss it.  Funny, the things you remember, the details of life you long for once they’re gone.

Then, the Saturday after Thanksgiving, my awesome sister Barbara was taken to the ER and abruptly moved to ICU with bleeding ulcers, breathing problems, and ridiculous leg pain and bruising.  While they were figuring her situation out, my sweet Uncle Donny had a heart attack.  He had a stint put in and was somehow “fixed” and home two days before Barbara.  I spent as much time as I could with my sister, trying to advocate for her when it seemed they weren’t managing her care very well.  There was one day when I felt like screaming Shirley MacLaine-in-Terms-of-Endearment style:

My mental illness has been showing.

I’m having full-blown panic attacks out of nowhere.  It’s always a déjà vu feeling, usually triggered by something – a certain word or phrase sets everything into motion.  Sometimes it’s a snippet of a song or a line in a movie.  Then I’m caught on a memory-train tunnel; a piece of my brain unlocks and floods with terrifying thoughts – things I don’t want to see or hear, the confusion of not understanding what’s thundering through my head while at the same time remembering, recognizing, the recognition terrifying, and I am forgetting or unable to breathe, a burst of fire in my center, my heart thumping odd strong rhythms, and then I’m falling from my chair to the floor, falling away from my consciousness, saved at the last minute by breaking out in sweat, knowing how to breathe again.  Moments later I always try, almost unwittingly, to recall what I was thinking, what was so overwhelmingly scary – and even as I seek it I am frightened to find it.  I never do find what it was that started the tornado, nor what was swirling through my head.  It leaves me feeling insane, or at least like I am facing going insane.  I call it a panic attack because I don’t know what else to call it.  What does it matter what you call it?  I’d do anything not to have another.  They are the most horrifying moments of my life.

Two workdays last week I cried on and off all day, for no reason and for every reason.

Still I worked my jobs and ate food and went to sleep and kept moving forward.  I have friends and a cousin in various degrees of distress and depression, and I want to help them.  More often than not, though, I’m right there with them and can only empathize with their dismal forecasts and downtrodden spirits.  Some of my extended family are feuding, and people are hurting.  It seems we’re all slogging through the holidays; I’ll be glad when the year turns and there is the promise, at least, of the renewal of spring.

I am not like this every day.  I’m not.  I sing and I smile and I do my best to combat the hate in the world by trying to be a good person.  It’s just a struggle right now.  I chose to write this in the midst of it, but I am not trapped under it.  I promise. I’m a Weeble.

And, as all Gen Xers know…Weebles wobble, but they don’t fall down.

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Where Jonah is concerned, the best place to be — the most dreamed of, sought-after, wondrous, asked-for place — is Grandma’s House.

For a variety of reasons, it has remained thus since he was a baby.  (Of course the best part of Grandma’s House is grandma herself).

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Jonah’s sitting on grandma’s counter in this picture, taken Christmas Day. I was sick and kind of weak; I tried to get a good picture of them standing side by side, but to no avail.  I wanted to show how Boo’s only a few inches shorter than my mom now, which would make him about 5′ or 5’1″ at not-yet-thirteen.  His growth seems to be happening, somehow, more quickly than before, as if I’d looked away for months and finally turned around to see him.

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I’m kind of wan in this pic, but Jonah’s all smiles.

Here are a few great pics we took in December:

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I love the way that last one came out, with all things notJonah softened.  It’s almost as if I knew what I were doing when I took the picture; ’twas luck, alas, and nothing more.  (For kickass-quality photography you can visit my sistercousin DiAnna’s website).

Then a few weeks ago Jonah started in a new classroom.  He was aggressing regularly in the other one, even on days when all seemed fine at his house.  His teachers and therapists thought maybe he was bored or unchallenged.  So far he hasn’t had a major aggression in the new room, so they were probably right.  I know Jonah’s bright, but it’s hard to know how much of that light we’re going to be able to coax from behind the clouds.  So far so good.

He’s been a happy kid, mostly, at any rate.  He adores his daddy and got to spend two overnights in a row at his apartment recently, which is right up there with Grandma’s House on Jonah’s list of preferred places to visit.

Lately Jonah’s developed a keen interest in his wardrobe and, more recently, in others’ as well.  He’s got two pair of sneakers at daddy’s place – one blue, one green – and he’ll tell you in no uncertain terms which he wants.

The other night Andy put him on the phone with me.  Jonah’s definitely not one to dominate a conversation, so I asked him a lot of questions he could answer with “yes” or “no.”

Eventually I said bye bye, Boo; mama loves you.  Jonah answered byebyemama and handed the phone back to Andy.  I heard Jonah ask twice: mama comin’ in? to which Andy automatically replied: 13 hours.

It seems to satisfy Jonah to have a number – any number – I think so he feels like what he wants is comin’…and when.

Then, in the background, I heard Jonah say:  Light green shirt? Andy answered no, buddy, This shirt is good.  I guess Boo’s new thing is to decide upon not only his own clothes but his father’s as well.  Sometimes Andy capitulates, allowing Jonah a glimpse into one possible career path toward fashion or wardrobe design.

I can just see him in Hollywood, pulling at a “wrong-colored” costume donned by Jennifer Lawrence, insisting no! no!

A few weeks ago I traveled to Bloomington to see Tim perform in a holiday concert with the Quarryland Men’s Chorus, which was as awesome as it could be.  Tim had a short solo in one song, and after both performances, audience members sought him out to compliment him.  I stood at his side, grinning proudly as if I were the one responsible for Tim’s mellifluous bass.

Tim's in the middle of the back row, with the long blonde hair & awesomely full beard

Tim’s in the middle of the back row, with the long blonde hair & awesomely full beard

Tim also gifted me with the best Christmas present I’ve likely ever received – but for now it’s just between us (and, due to my uncontainable excitement, two friends whom I swore to secrecy).

* 12-29-14 * NOTE:  Now lots of folk are guessing Tim gave me an engagement ring, and I’ll put that rumor to rest.  We’ve been in a long distance relationship for just 5 months.  And this gift is better, presently, than the prospect of marriage — to anyone!

We are happy.

We are happy.

And so life is good.

I am getting used to being cold, bundling up with resignation and maybe even complacency against my chosen 55 degree home temperature.  The no lights thing is actually more difficult – I go through candles like boxes of Tagalongs at Girl Scout cookie time, and I now have an oil lamp.  Since the days are so short, I want to go to bed at around 6 or 7, like an old lady.

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I get out every day, when I can motivate, and I fight winter blues/being alone/stagnation, reminding myself that every day now, the days are lengthening. There is much to do and plenty to look forward to with the excitement of this new year coming – 2015 rising like a glorious dawn.

I know the journey truly is the destination, and this one feels really right.

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I got to see Boo twice this week, which was awesome, and he was a happy kid both times, which was even better.

On Thanksgiving Day my mom had home-made all kinds of traditional dinner dishes and then, as she has been doing for several years now, portioned it out into containers for Andy and for me.  She’s an awesome woman and grandmother and mom, and I sometimes can’t believe what she will do for the people she loves.  Her heart is big, and full, and loving.

She even makes her father’s stuffing (my “poppy,” who died in 1999)  – an amazing and difficult concoction of deliciousness I can’t even begin to describe.

Andy brought Jonah up around 11:30am – Jonah’s always begging for “grandma’s house?” and so this was indeed a grand occasion.  We even had a beautiful day, for it had snowed the day before and there were 8 inches or so on the ground, white still newly-clinging to the branches and bushes against a happy blue sky.

Because we had our dinners packed up to eat later, my mom had also made sandwiches for our lunch.  Jonah, however, likes to search every compartment, cabinet and crevice for different and unusual food choices- especially at grandma’s house.   There was bacon in the freezer, cooked pieces my mom makes a few at a time and then stores away for later.   Once he saw that, Boo knew what he wanted.   If you listen carefully at the very end, he comes over to me and says “and the boobie,” evidently intending to fish down my shirt.  Not happening, kiddo.

He even got to see a train, on a car ride a few minutes after that video was taken.  Sometimes it’s not until I watch videos of Jonah that I realize his level of functioning (both below, above, and beyond others) and can see how very different he is from other children.  I don’t spend a whole lot of time with kids in general, and when I do, they seem like mini-adults or special other creatures who act and look like strange little beings with superskills.

This video from yesterday is an example, too.  Jonah listens to and likes what he likes, without shame or any concept of cool and uncool — none of that “these songs are for toddlers and I’m going on 13.”  I love it.  It’s all very loud; Jonah likes his music cranked.  In the video he says he wants black soda, but quickly decides to try and thieve both mine & my mom’s white sodas.  Having succeeded in making off with mine, the fun begins.

Oh, he is a funny, sweet little boy when he’s happy.  Lately he has been exploring a little more music but definitely has his favorites (his current favorite song is Prince’s Sign of the Times and he asks for it over and over by announcing its track number.

In this video from yesterday he’s jammin’ to Third Base.  He looks like a little gangster, silly Boo.

He hasn’t been great in school lately – more aggressions.  The school called me last week and said they were going to have a meeting about Jonah and whether or not it might be better to transfer him to a different classroom.  The concern is that he’s bright, and bored, and needs more to keep him occupied.  You shine like the sun, my son!  We’ll work together to get you the best schooltime possible.

We have a special relationship, Boo and I, for I am also unconcerned these days with what’s cool, and we rock and sing and love together.

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(I think he knows his mama is a little nuts).

Which brings me to my great winter experiment, by which I use neither heat nor lights.  I think I should start a new blog (or maybe a heading under this one) where I discuss things not Jonah-related.  So if you see a new tab up on my main page, that’s why.  If I had all day to write I would make five or six separate blogs about all kinds of things….

So anyway, for today I’ll just keep it here.  I have turned my heat up to 55, having been warned that it’s the lowest temperature at which I can set the thermostat to keep my pipes from freezing.  To be honest, though it is growing colder, I am used to it somewhat and I think I’ll be able to stick it out through the winter.

And I have added further restrictions to my self-imposed experimental wintertime lifestyle: I unplug nearly everything before going to bed or when going out.  I limit my use of paper towels;  if it can be done with a dishcloth, I use that instead.  I take hot showers less often (2-3 times a week instead of once a day) and set my washer on cold water.  No more using the dishwasher.  I’m selling my movies, books, cds on amazon and e-bay in favor of going to the library. (My precious books are the hardest things with which to part).  I get 10 minutes of space heater time during which I get dressed in front of it.

I’ve even caught some media attention from doing this, while trying to get press for Modest Needs.  Once they find out I’m living like this, that becomes the big story – which is fine with me.  At least I get them to mention Modest Needs as an organization helping people stay self-sufficient.  If my “strange & kooky” lifestyle helps that along — by selling papers or getting people to watch TV, I care not.  It all feels quite normal to me, this austere lifestyle I’ve chosen.  It’s not for nothing that Laura Ingalls Wilder & Dick Proenneke are my heroes.  Anyway I should be in the January issue of 518 magazine and also the Bethlehem Spotlight newspaper, thus far.

Call my crazy.  I don’t mind.  This kind of crazy doesn’t hurt anyone and helps me prioritize, to stay mindful of what really matters.

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My precious boy and me, with grandma watching o’er in the background.  (I’d include more pictures of Andy but he doesn’t like it).

Over and out for now, peeps.  Time to work. And on Friday, courtesy of Tim, I am flying out to Indiana to see him and the Quarryland Men’s Chorus perform an off-book (memorized) intense holiday concert.  My Tim has a solo and one of the best voices in the choir.

How proud am I?

happy couple locks of love

“They love each other…”

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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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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.

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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.

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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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Andy and I are talking, making decisions, struggling to do what is best and right for Boo.  I know everything will be okay.

He drove Jonah up this afternoon to visit my mom and me at her house.  Jonah’s got the week off from school, and they’re coming up to grandma’s house for Easter Sunday too, so I get to see Boo twice this week.

When I first arrived, Jonah and Andy were already there.  At one point Jonah opened the fridge, peered inside, and reached for a bottle of soda.  Root beer? he said, placing the bottle on the counter.  It was indeed a bottle of root beer.  Andy asked how Jonah knew it was root beer.  My mom replied that Jonah knew the look of the bottle.

Then I piped up.  “He can read,” I told them.  (Now I know as well as anyone that he only can read some sight words, but I wanted to see which ones he knew).

I picked up a milk carton and, showing it to Jonah, pointed to the word MILK.  “What does this say, Jonah?”  I asked him.

“Jonah,” he replied with indifference.  Enough people have asked me to look at letters and tell them what I see, I almost hear him say.  Not you, too, mama.  Cut that shit out.

It has been a weird and wonderful day. I was treated to lunch by my lovely cousin-sister D.  She is inspiring and is a genuinely good, positive person, which is rare enough to be precious to me.  She listens as well as talks.  This is a skill, requiring awareness.  She’s better at it than I am.  She’s good at it like few other people I know.  Her spirit is bright and ready for a smart, engaging, adventurous future.  Go D!

Also I was able to talk to a lot of interesting people over the phone at work.  When your job is to be on the phone a lot, you may as well find out about people.  You can brighten their day, maybe, or be the person who listens to their story of how they built a business up from scratch 16 years ago.  You can’t just bullshit your way through caring how somebody’s day is going…that’s transparent, unless you’re genuine.  After all, who can’t see through that pitch when it’s thrown at them?

Now I am home, and comfortable with Jack, Almanzo, M, and Seinfeld.  It’s all I need right now.

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“We must be willing to get rid of the life we’ve planned,
so as to have the life that is waiting for us.
The old skin has to be shed before the new one can come.”

~ Joseph Campbell

Me & Boo

Window

by Guster

A gaping wound tells the story of it all
A man lost only to find
What was left of his mind
With no hope of a scar at all
You say, “Go slow”
But something’s right behind me
I can run away for only so long
It will not stop
I will come down
Oh no
Let me find my way
I’ll take you to the edge
Go across that window
And I’ll carry you there
Oh when nothing goes right
Oh when days don’t come tonight
Oh when all I see is the error of my own enemy
A man alone and cut and torn for it
His whole life friend after friend
They’re all a flash in the pan
With no hope of rejoice at all
Let me find my way
(Don’t be scared of what you might be thinking)
I’ll take you to the edge
Go across that window
And I’ll carry you….

I love how you can see his reflection in the car window here

What a beautiful weekend this is.  What a happy boy was Boo yesterday.  He is the dawn after my darkest.   Jonah is such a joy…clever and curious…a mischievous boy with a sometimes silly, sometimes subtle, sense of humor.

And this time when we visited the river/train he really wanted to dip his feet in the water.    (The whole thing was my fault because I took off my sandals and dipped my feet in, and then he wanted to also, so we both did).

We splashed around together and giggled and got pretty wet – the kind of wet you don”t worry that much about because it’s sunny and warm enough to dry you pretty quickly.

Jonah, splashing around with Knockout Ned

Captain Jonah surveying the land

for Boo there’s nothing better than water

A patriotic Jonah sports a shirt from “Pa”

Jonah, watching them take a boat out of the water near the dock where he usually sits

After my mom and I left, Jonah stayed with his dad and they likely played some more, hit some of Jonah’s favorite hot-spots.   Again today Andy went to pick up Boo, bring him back to his apartment, give him lunch, a bath,  and spend time with him.

Maybe he will be able to take him overnight some day.  It is enough to have small steps.  It is enough.  Seeds, sprouting slowly, but sprouting nonetheless.

Jonah meditates under his daddy’s careful watch

Today I gardened and gardened and gardened.  I found all the little pots I could and filled them with soil and impatiens, and I dug in the earth and planted some.  Things are about as pretty as they’ve ever been in both my front and back yards.  I weeded as much as I could, and M mowed the front and back, and then we were hot and tired, so we came in and I decided to sit in front of my fan and blog.

My lovely flowers…the key to flowers is perennials, I think.  More perennials.  I am so not a gardener, but when I garden I feel joy.  I don’t use gloves…I need to feel the soil and let the earth move through my fingers.  (You get very, very under-the-fingernails dirty and usually a whole lot of scratches this way, but still it is the only way I can do it).

I’m going outside to take pictures of the friendly flowers and prickly plants and prickly flowers and friendly plants I played with today.

somehow the focus is on that bud off to the right…

I think Emily was correct:

“Hope is the thing with feathers, that perches in the soul, and sings the tune without words, and never stops at all.” ~ Emily Dickinson

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