Posts Tagged ‘trains’

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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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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Some of our boy is back, now that we’ve got Jonah taking the original dose of Risperdal again, for fear of attempting yet another med or dosage that’ll throw him all out of whack.  It’s a strange thing to try this and that, feeling like you’re guinea-pigging your child, especially since you used to think you were anti-meds.  Desperation will bring you places you thought you’d never see.

After work I often go the house, and Andy and Jonah and I will take a ride to go see train, which Jonah enjoys again and seems to get excited about, but if a train takes too long to come along or we take a right when he wanted to go left, we pay for it in kicks and thrown shoes, screams and thrashing and incomprehensible demands.   It’s a trade off; we can have some of his personality and smiles back but the aggressions still aren’t mitigated very well.

But ah, the smiles…

They’re sweet, the smiles, and damn it he’s in there, the kid who swims and climbs and pours wood chips down the slide.  It’s great when the cloud of aggression parts and you see him smiling, playing, singing, joyful.  Even just calm, eating or watching train-on-TV.

He’s my precious little boy, and I want to snatch him up and plant kisses all over him, have him open his arms wide and hug me, say I love you, mama —  hold him close, snuggle into him on the couch, sniff deep into his hair and simply absorb the presence of him.

Springbrook hasn’t contacted us yet, so we’re waiting.  From Thursday through Sunday I’ve got a lot to do during long days at our annual spring convention at work, so I’ll be back after that’s all over.  It’s fun but exhausting, and I’m presenting a session this year so I’m a little bit nervous.

Please send Andy some “you can do it” energy, if you will.  My mom will try to help him, or at least feed both he and Jonah, and my cousin D will hopefully help too – but trust me it won’t be an easy weekend for him and I hope Jonah doesn’t give him a hard time.

Once in a while Andy’s got to catch a break, right?

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“Grandma is open for business!”  Andy tells our son in the fake-bright voice of exasperation.

He is telling Jonah that yes, we can go see grandma now.  Jonah understands that when something is open for business, he can have it.  When it’s closed, he can’t.

Anything can be open for business or closed – including people (like Grandma), cookies, his scooter, cranberry soda, the TV, the Rensselaerville Falls, or even something that really is either open or closed, like an actual store.

Jonah loves his grandma almost as much as she believes the sun rises and sets on her only grandchild.  Only two things stand a chance at trumping her on Jonah’s request list:  go-see-train and swimming, and even among those prized temptations, grandma usually wins out.

Jonah is eight and a half.  He has autism, and for him, and our family, that means he speaks only in small phrases yet can somehow sing entire songs (usually by Guster) verbatim.

It means children are largely obstacles to Jonah, things to move past or get around, and adults are providers of hot dogs, car rides, games of chase, and “mem-a-made” (lemonade).

It means he will pee pee on the potty when bribed, and will (only very recently) squat and squirt out a tiny poopy on the potty when promised a coveted “black soda” (any kind of cola).  At all other times he wears pull-ups, requiring frequent and oft-stinky changes.

It means he drives us to distraction with his repetitive requests (“Outside?  Outside?  Outside?  Wanna-go-see-train?  Grandma?  Outside?”), but he endears himself just as repeatedly every time he nestles in for a big huge “huck.” (hug).

It means that until he was eighteen months old or so, we had very little idea what the hell was wrong with our kid but we knew that something strange was definitely afoot at the Circle K …yet we kind of dismissed autism as a possibility because “those kids just sit in the corner and bang their heads against the wall” — and, well, our son was so bright, loving, and engaged.  Couldn’t be autism.

It means sometimes there are Saturdays when by 10am I am already “all done” with the weekend and wishing I could go back to work instead of pulling my son away from a crowded playground because he won’t stop shouting “penis!” and all the parents are glaring.

It means I have been drawn inexplicably and unwillingly into a world where surreal is the norm and life is sometimes simply pushing through one minute at a time – sometimes excruciatingly, sometimes hilariously.  Sometimes both.

It means all of this and more, and for this writer, it is high time to write about it.  I was supposed to maybe have a blog on our local daily newspaper’s website, and the editor over there seemed initially interested in my proposal to do so, but now after weeks have gone by, he has yet to answer either (A) my follow-up voice mail or (B) my follow-up-e-mail-regarding-the-follow-up-voice-mail, and I don’t feel like begging the dude.  Plus they’d probably censor me, and fuck that.

This blog, then, about and in honor of Jonah Russell, is “Open for Business!”

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