Feeds:
Posts
Comments

Posts Tagged ‘reticert’

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.

Read Full Post »

Andy drove Jonah up to the glaucoma doc this morning and I met them there.  The good part of that is I got to sleep an extra half hour and I got to see my Boo.  The bad part was the damned operation they’ve scheduled to take the Reticert implant out of Jonah’s eye on the off chance that it’s still emitting steroids, in which case we need that to stop.  Jonah, as usual, was very good through all the exams and procedures, the eye drops and pressure gauge.  But his left eye is 20/400 (20/200 is legally blind).  And so May 14th he’ll have his 5th? 6th? eye operation.

After today’s appointment Andy brought Jonah outside and I stayed behind to talk to the doc and do the paperwork.

“Is there anything we can do to treat that eye…to improve the vision?”  I ask doc S.

“Well, if he were a normal boy…”  he starts.

That’s all I hear.  Yeah.  If he were a ‘normal’ boy he could wear glasses that he wouldn’t throw and smash, and he could have the permanent operation to redirect the drainage in his eye, but he can’t…he’d rub his eyes and crush the whole mechanism before it healed. 

Why can’t this doctor just answer the question?

He gives me a brochure about glaucoma.  It’s the brochure I read months (a year?) ago – the one that says glaucoma is an eye disease that gradually steals your vision and glaucoma usually occurs in both eyes, but extra fluid pressure often starts to build up in one eye first.

I tell him I have read the brochure.  I ask him about that first sentence – the steals your vision part.  He smiles at me, answers “if left untreated,” and is already out of the room before I can respond.

If left untreated. 

Well you just told me we can’t treat it, I want to yell after his retreating figure.

I realize I’m painting an unfairly poor picture of Dr. S. here, but what I want is the bedside manner of that rare, wonderful doctor who will sit, listen, and speak to you as though you are an intelligent human being (instead of aiming medical terms over your head then ushering you out the door).  But people rave about this guy.  He has “Best Doctor” awards all over his office.  (Today I noticed he’d re-arranged them). I’m sure he is a fantastic glaucoma specialist who’s great with the demographic of the majority of his patients:  an aging, docile population of ‘normal’ people.   He is kind to Jonah in an off-hand way but never learns that Boo does not converse and is never going to answer his questions about whether or not Santa came or what kind of Easter he had.  It isn’t like Jonah hadn’t been there 10 times or so before.

Grandma?  Jonah answers when the doc asks him one of these questions – and where can the doctor go from there?  I smirk, turn my head.  Way to shut him down, Boo.

And so after the doc appointment Andy brought Jonah to see grandma.  They all drove to the train in grey car and my mom told me later that Boo was good; they saw a very long train which pleased him very much.

Easter was kind of a blur.  Andy drove Jonah up and I met them at grandma’s.

Easter Boo
                        Easter Boo

My mom made delicious food but now it is always pre-packaged up, one for Andy, one for M and me.   There is no pretense of sitting down to eat and there hasn’t been for some time.  It’s better this way.  I love my mom for making the delicious food anyway and for getting Boo a beautiful Easter basket anyway, but I also fight to stay grateful – especially, for some reason, on Easter.  I see little kids all dressed up and going to church after their Easter Egg hunts…I am jealous of that whole piece.

I didn’t even go to church on Easter myself.  My favorite priest is retired and gone, and I wanted his Easter homily only.  I am a one-priest-Catholic, I guess. And now, I love Pope Francis.  His humility and simplicity – his gentle ways, his appeal for peace, for the poor, for the helpless.  It’s not as if I am a good Catholic – or a good anything, for that matter.  But this pope makes me want to identify myself with Catholicism more than any pope before him that I can remember.  I like to keep abreast of what he’s doing and I’m so happy that, whether people are Catholic or not, what he says and does will be a big influence on the world.  We could all use a leader with a little humility, if you ask me.

Anyway.  I don’t really like holidays anymore.  My favorite holiday is sleep.

Read Full Post »

Warning:  this post goes all over the place Please keep hands and feet inside the vehicle.

What a wonderful, sweet boy my Boo was yesterday.

Andy had picked him up the night before so when my mom and I arrived, Jonah was already there. Andy told us Jonah asked for both of us about 10,000 times that morning.  When I walked in, Boo immediately sought out the goodies I carried (one bag with natural potato chips and another full of birthday presents from my friend K). After capitulating warmly to hugs and kisses from my mom and me, he tore into the goodies..tune-fish sandwich…bath with new toys….more kiss?

His perch while eating is atop a white garbage container which sits next to Andy’s kitchen counter. It is Jonah’s dry bar  – and the garbage can, his bar stool. He tucks his legs under him, mama-style, and chows down to his content. Good thing Andy is very clean, but then again, no reason to be a germaphobe when your kid takes 5 baths a day.

only my kid

This is so Jonah

Nearly immediately thereafter (and sometimes during) his meal, Jonah decides it is time for bath. On this day, I help (usually Andy does), and we had fun splashing around in the bubbles with his new, courtesy-of-K, colored straws.

Colored straws!

Colored straws!

Here I must pause to reassert I am a lucky parent in several ways; for instance, it’s exceedingly inexpensive to bring him joy in the form of play. He is 11 and other children his age have lots and lots of expensive things. I don’t even know what. A gaming station, for certain. Hell, even I had one of those by age 12 or 13. (Mine was called Telstar Colortron and played pong). Anyway, I get off cheap. My mom used to buy him all kinds of electronic games and learning gadgets but he just didn’t really like anything unless it played music. Now he just bops along like a playah, listening to hip hop in the back of dad’s car.

cool as a cucumber

cool as a cucumber, pimpin’ the Gs

Then we played blowing raspberries (I have been watching All in the Family a lot).  Boo thought this was great – and, as usual, ended this very slobbery game by sucking his thumb.

He’s got a couple of new teeth (molars?) coming in, too, so he decided to use grandma’s hand to try them out:

he thinks grandma's hand is a teether

he thinks grandma’s hand is a teether

Jonah was happy to have grandma along in the backseat, something he has not tolerated lately. Grandma stay here? he usually says, and my mom stays at Andy’s apartment watching Fox News. But this day he was tolerant, even sweet and lovey. I love taking these pictures of Jonah with his adoring grandma.

o smiley boo

o smiley boo

Oh, it was a good day. A day of grace. A gift to all of us.

At that doctor appointment…the one I didn’t want to talk about anymore last post…Jonah was so very very good, I’d said. So good that the retina specialist could see both his Reticert implant and his optic nerve very well. So well that she turned away from Jonah and spoke to me in a low, controlled, serious voice: I’m very concerned. Jonah and J left the room while E and I stayed to talk to the doc.

The pressure in his left eye is at least 30, and she suspects higher. The optic nerve has thinned considerably, drastically more so than when she saw him a few months ago.  With his left eye, he could barely read the giant E on the chart.

little boo is better at the eye doctor than most adults are, including me

little boo is better at the eye doctor than most adults are, including me

From what I could understand, we are out of options but for one: do what Dr. S (the glaucoma doctor) has wanted to do all along – take the Reticert implant out. It isn’t as if Dr. F (the retina doc) has come to agree with him – it’s that she doesn’t know what else to try.  If we opt not to operate to take the damn thing out, his sight will eventually disappear altogether in that eye. If we opt to operate, the Reticert comes out but it might not do any good at all.  It’s a shot, though doc’s confidence is not high.

I keep remembering how much pain he experienced after they put the Reticert in his eye 3 years ago. It was the first time in his life, at age 8, that he verbally expressed pain. Eye hurt? he cried, hanging his head in despair-like desperation, cradling his forehead with one hand, pain pulling the words out of him.

Since the Reticert isn’t supposed to be dispensing meds anymore, it could just be left there, according to Dr. F.  But now she wants to try taking it out. E asked questions. I asked questions. Of course I forgot to ask a lot of questions. I scheduled the operation for May 14th, figuring there was plenty of time to change our minds, to research, to ask other people.  To think.  Absorb.

There is a doctor who comes from Boston to see patients at Dr. F’s office. I want her to get him over here to see Jonah before we do all this. I need a second opinion, a different perspective. It isn’t that I don’t really love and respect Dr. F.  I do think she maybe has difficulty dumbing things down for we lay-folk.  I didn’t understand well, for instance, that the eye pressure would in turn put pressure on the optic nerve, which is why it’s thinning out.

When I left her office with E, I was in a daze. I think E was, too. Poor peanut butter, she said, her loving nature holding all these children’s hearts to her bosom; her sharp mind keeping track of them, protecting them, listening, keeping on top of appointments, trusting her instincts. She and J are amazing. I have said it before and I’ll likely say it again.

When I got to the van, I was almost openly weeping, fearing the worst — total blindness — ready to curse God pre-emptively for a nightmare scenario which hasn’t yet occurred. Keeping it together for a moment, I kissed Boo soundly and turned away. Then E hugged me and J as well, and I got in my car and cried, allowing a fog to descend on everything. I can’t fight the aggression and the blindness and the 6% proposed fucking budget cut to the Office of People with Developmental Disabilities all at once.

And so I called Andy, my dad, my mom. Told M and a few close friends. A few people at work. People with autism are usually visual learners. The irony would be funny if it weren’t so maddening.  I called Dr. F’s office and asked for her e-mail address. I am not an orator and if I speak with her on the phone, I will forget half of what I want to ask her and most of she tells me.  If I can e-mail her, I can take my time to gather my thoughts and formulate my questions.

When my mother arrived yesterday, we hugged one another and I held on to her tighter and longer than usual. She loves Boo more than anything on this planet, I believe, and that is why she can know my feelings perhaps better than anyone except Andy. We only talked about it a little. We both said we would give him an eye if we could, and then we had an “argument” about which of us should hypothetically give him an eye, and she declared it should be her eye – which sees very well, she’ll have me know. Besides, I need my eye for work, she asserted. It was a ridiculous conversation but it kept the focus (pun intended) away from the fear.

And then the beautiful scent-of-spring Rhinebeck cold and a wonderful day of grace.

If you know me at all you will probably be surprised to hear me say this but I would love to take Jonah to see Pope Francis.  How cool if he were even to be blessed by this man who wants us all to be humble, to protect the weak, the environment, the poor.  I love Francis’ humility and his gentle spirit.  I smile when I read about what he says and does.

I would maybe take Jonah to Lourdes, or a faith healer I believe in (is there any such human?)  I am buying him essential oils. I’m becoming more willing to try anything innocuous as long as it is not downright ridiculous. And fewer and fewer things are sounding ridiculous. You can’t understand how desperate you can get until you walk a mile in the moccasins.

This is why I love working with prospective adoptive parents. I understand their emotions, if not their exact situations. I get it. I know what is like to want something so badly, to have all this love and all kinds of questions like when is this going to happen and is this going to happen and my God who can I trust who really cares who has a heart? I understand what it is like to be part of a vulnerable population.  Plus I am adopted and it gives me a special connection to them all.

Divinity is prodding at me. My faith is so weak. A fucking mustard seed. I am the atheist in the foxhole (though I never was an atheist) in the sense that I find it easier to reach out to God when knocked to my knees, even to a God I don’t understand or can wrap my mind around. It makes sense that there would be a Jesus son of God in order for we humans to wrap our minds around it all.  A human you can relate to – even one who tells puzzling stories and heals people left and right. Why do I struggle so with the concept of God and accepting Jesus into my heart?  Is it all the truths I see in other religions?  Can’t I love and pray to Jesus and still believe others will go to heaven too?

Do I have to believe in what I can’t help seeing as a “special club” mentality of I’m going to heaven and you’re not?

I would rather follow Jesus through actions, evangelize through deeds. I would rather listen and act upon the wisdom of Buddha as well. I would rather believe there is a chance for us all to experience an afterlife, a rebirth, something other than nothing.

At any rate now I am praying. And in my old Catholic way. Praying to the Mother, to Mary, to help us, to intercede on our behalf. The Protestants don’t understand why we pray to some saint to intercede when you can just go straight to God, and I’m not sure I’ve got an answer for them, but I know St. Anthony comes through for me when I lose something important, and I feel Mary listening, empathizing as a mother who raised a difficult son of her own. Sometimes when I pray to Jesus it is more like Guster’s song Empire State:

“I’ve been talkin’ to Jesus, but he’s not talkin’ to me…”

It is difficult to “give it to God,” and it is a fine line. Do you throw up your hands? Are you supposed to step completely out of the way?

Please feel free to chime in.  These are not hypothetical questions, and I am seeking…

He conquers who endures. ~Persius

Read Full Post »

Tuesday, two people from Jonah’s school drove him up to his glaucoma appointment, and I met them there.  This was his first appointment at a glaucoma doc since they determined he had it.  We knew he had a good chance of getting glaucoma.  In February of 2010 they operated on his left eye, placing a Reticert implant inside (which constantly emits a controlled dosage of a steroid, locally) and they replaced the lens of his eye with a fake one.  Too much pressure in his eye.  Glaucoma was likely, eventually, they said.

In photos you can see his left and right eyes look different.

And so now glaucoma.  At the appointment I was given a brochure called Understanding and Living With Glaucoma.  Its clear, clinical language was interrupted in just one place:  the first sentence (under the heading What is Glaucoma?), which somehow managed to sound both dismal and anthropomorphic:

Glaucoma is an eye disease that gradually steals your vision.

I closed the brochure.  Not now.

During the whole time, Jonah was the bravest little boy ever.  I’m so very proud of him.  The doc was almost an hour late, so we had to entertain him, and the two people who drove him up from school turned out to be incredibly awesome, operating like a well oiled machine.  I don’t mean to say they were in any way cold, either.  E was a short giant of a woman.  She knew her shit.  She was friendly and efficient, and perceived exactly how to handle everyone, from me to the doc to the receptionist.   E put everyone at ease, and kept everything at Def-Con 1.  A compassionate magician of a woman.

She understands the system and works well within it, but she also demands respect and damn well gets it.   I loved her.

With her was J, a muscular young-looking man with a strong-yet-softie look about him.  He and Jonah were like brothers.  (I kept thinking of Rainman:  V-E-R-N.  My main man Vern).  J is definitely Jonah’s main man.  He knew how to re-direct Jonah and did so with a deceptively casual brilliance.  He’d look over at Jonah and say give me the punch and they’d bump fists, Jonah giggling.  J too was friendly and comforting; when I sang with Jonah he said “you got pipes” – and we chatted easily.  He told me he was an amateur boxer, and he was about 10 years older than I’d pegged him for – all the while engaging with Jonah as necessary and wise.  I loved him.

I tell you these people were awesome.  I was so grateful I was nearly in tears.  When other people are in charge of your child, people who are not relatives or even friends, you want to kneel before them as you would royalty, for they have the most important job in the world, to parents like Andy and me.  They care for our little boy.  He will be ten on March 7th,  sharing a birthday with, of all people, Tammy Fay Baker.

Wait!  Wow.  I just searched for “Who was born on March 7th” out of curiosity, and found out Elizabeth Moon shares his birthday!  She wrote one of my favorite books, The Speed of Dark– set slightly in the future, about a man who has high-functioning autism and must decide whether or not to undergo a new procedure to make him normal.  The book is where I got the title for this blog, Normal is a Dryer Setting.  In The Speed of Dark, one character with autism says it during a conversation.  I love that.  Who else was born on March 7th?  Ravel, the composer.  Wanda Sykes, the comedienne.  And even Pam Carter – Wonder Woman’s sister.

But I digress.

Doc was good.  A little cool and clinical, but 99% of doctors are, after all.  (Not you, Jacob.  Or you, Neil. You’re the 1%.  HA!)  Here’s where it gets weird, though.  With both E and J holding Jonah, the doc put numbing drops into Jonah’s eyes (Jonah’s used to eye drops so that wasn’t the big deal you’d think it might be) and then looked through his fancy machine and said “this suture is broken.” He turned to the nurse, asked her for an instrument, and proceeded to (I have no idea how) remove the broken suture from the back of my son’s eye.  Um, okay.  Wow.

Turns out it had been scratching his retina, the suture, and as a result the retina was red and irritated.  “How long do you think it’s been broken?” I asked.  “Months,” he replied coolly.  “At least.”  I looked at the suture he’d set on a tray.  “Could he have been in pain all this time?” I asked.  He paused.  “Yes,” he answered.

But Jonah’s to the point where he can say if something hurts, I was thinking.  After his eye operation, he cried in misery and very clearly stated “eye hurts!”  I don’t understand and I don’t know what to think.

But in a few weeks they’re going to put him under anesthesia so two specialists can take a closer look at his retina.

Then the doctor set me up with the name of a rheumatologist who sees children – something we were told a year ago did not exist in this area…which is why we traveled to Boston Children’s Hospital to get him diagnosed with juvenile arthritis, something all the doctors here suspected he had.  Now, finally, he can be hooked up with a rheumatologist.

There is more but I am tired.  It has been a very exciting day, and I’ll tell you all more about that later.  I have to go watch Tora Tora Tora; my dad said it was the most historically accurate portrayal of the events leading to the attack on Pearl Harbor, and I’m interested in that.

Good night all.  Good night, little Boo.  Sweet dreams.  If there’s any mistakes in this I’ll come back and fix ’em tomorrow.  I don’t have it in me to edit.

Read Full Post »

<span>%d</span> bloggers like this: