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we are shooting stars

Just typed a long blog post, complete with frequent “Save Draft” both automatic and self-saving, published it, and POOF it is gone.  Not in drafts, not anywhere.

Lots of pictures in it.

I guess it wasn’t meant to be.  It’s just as well.  It’s been a sad weekend for me and this way I can let the whole post go, the whole time just disappear; all the people – we are shooting stars…

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Yesterday Jonah required a “two-person takedown” at school. 

Whenever there is a “two-person takedown,” they are required to call a parent to explain what happened.  When my cell phone rings at work and I see their area code, my heart always jumps and then sinks, diving down into a numb place before I answer.  I don’t want to hear it.  I don’t want to know it.  I want to be ostrich-mom and I can’t, and I want to believe he doesn’t hurt anyone anymore, but he does.  Not nearly as often as before, they tell me, but I hate it just the same.  For me it is the worst aspect of his autism, by far. 

He was in music class, which I would imagine he’d love.  I don’t know what upset him but he became frenziedly violent.  He was removed from the music class and they attempted to bring him back to his regular classroom, but to no avail.  Hence “the two-person takedown.”

He breaks glasses and hits, scratches and tries to bite.  He fights dirty, no holds barred.  Then they calm him and he gets his proverbial shit together, but it is impossible to say for how long. 

The time bomb ticks.

People ask me how Jonah is doing.  A lot of people.  I appreciate it and their concern means so much to me, but more often than not I ask them to please read my blog.  I know that might sound insulting, or even mean, and I try to explain:  I can’t live this every hour of my life. 

If I tell the same story over and over again, I become depressed and anxious.  If I worry and perseverate on the craziness of it all, I can’t function.  So I set aside blocks of time to tell the tale through writing, which is easier, and better, and usually much more articulate anyway.  I apologize to the people who want to know about Jonah when I just don’t have it in me to talk about it, but I get the feeling they are hurt and insulted anyway.

I hate that I can’t hold my boo in my arms and rock him back and forth, singing to him and calming him.  But he is 9, not 2, and the whole point of the school is to increase independence and learning, so kids are not treated like babies just because their cognitive ability may be low.  I have to admit I would have continued to baby him had he not gone off to school.  I love him more than most people in my life know or understand.  But hearing about his anxiety, his meltdowns, his aggressions – it’s too much sometimes.  I don’t know what he understands and I don’t know what to do most times. 

I trust his teachers and caregivers to nurture and love him, but is that too much of an expectation?

The effect it has had on my mother, and on my relationship with my mother, is significant, to say the least.  Jonah is the only child of an only child, and to my mother he is the sun, moon, and sky.  He is her everything.  It makes me feel like I must compete with her to prove he is my world as well, but it’s so different for me.  For me, there is also deliverance from a life I couldn’t live anymore. 

I believe with my heart this is the best thing for my son. His best opportunity at independence – at freedom from whatever it is inside him causing him distress. At competency in life skills…at learning.  At life.  I assert this a lot in my blog posts, I know.  I have to.  I need it to be true.

But what if I’m wrong?

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Sometimes I joke that I’m not Darwin’s poster child.  I’m scrawny, kind of weak, hyper-sensitive, and rather meek.  I have asthma, osteoporosis and a mild case of Marfan Syndrome.  In any given room, I’m probably not the fittest.

If I’d been born in 1869 instead of 1969, I likely would not have lived through childhood.  Everyone who knows me well is aware I have a near-obsession with Laura Ingalls Wilder, who wrote the Little House on the Prairie series of books about growing up as a pioneer girl on the prairie.  Back then every family seemed to have a passel of kids and inevitably, two or three never made it past infancy.

Laura’s baby brother, Charles Frederick, died when he was 9 months old.  Laura’s only son, never named, was only a few weeks old when he died.  And Laura’s daughter, Rose, lost her own only son when he was just a baby.  Laura’s sisters had no children of their own.

The Ingalls ancestry ended.

Back then, if you made it past infancy, you faced a myriad of other killers like Scarlet Fever, blizzards blocking trains (fuel/food) for months at a time, grasshoppers and crows destroying crops – starvation and illness and accident.  From all directions death came at you, all the time – and your “job,” essentially, was to survive.

As medicine advanced, people lived who otherwise wouldn’t have before.  Simultaneously, the Industrial Revolution started long paths of both invention and innovation, but also of contamination and pollution.  The weak ones survived, Darwin be damned.

Maybe things like autism are the result of the “weak ones” not only surviving, but also being exposed to God-knows-what in the air, food, and water.  I don’t know if I’m talking nonsense or not, but I’ve been thinking about it all.

Seems to me we enjoy looking back arrogantly and laughingly at things we used to believe.  Can you believe we once thought the earth was the center of the universe?  That leeches could cure illness?  That cigarettes are good for you?  But now, we know better.  Right?  Probably not.  In 150 years they’ll be looking back just as disparagingly and laughingly at things we “know to be true” today.  We’re in the infancy of understanding autism, I’m afraid.  In some ways I’m as much a pioneer, like it or don’t, as Laura Ingalls Wilder.  Maybe that’s why I’ve always felt drawn to her.

Thus ends the preface of the story of Jonah this weekend.  His school had a “Harvest Festival” on Saturday, so my mom, my aunt, my cousin D and me headed down to visit.  What we didn’t know is that the last 20 minutes of the ride would take an hour and 20 minutes to journey.  There was a wool and sheep festival at the local fairgrounds, and everybody was headed for the herd.  It was interminable, the cars crawling like ants, people on foot passing us just like in the very beginning of Office Space.   At times I actually put the car in PARK.

Eventually we called Andy and decided to go separately and meet in Jonah’s classroom.  There we saw Jonah’s cool teacher, who told us Jonah was very bright; she gave us big piles of his art and worksheets.  He gets all the math correct, evidently, and can even write (with all the skill and care of your average physician).

Part of the harvest festival schedule was an invitation to view the brand new recreation center… which I guess we’ll have to check out some other time, because we were so late Jonah had already eaten lunch at the recreation center and was headed back to his house with T, one of his caregivers.  When we saw him, we overwhelmed him, I’m sure.

Daddy and mommy and grandma and Aunt T and D…all come to visit, all wanting hugs and kisses.

D hung back, smart and patient, knowing we ought not to be crowding in on him.  But damnit, I’m his mommy and I wanted to hug and kiss my boy.  At any rate he survived the converging mass and almost immediately asked for apartment (Andy’s place), so we walked to our separate cars and drove to the apartment, me riding with Andy and sitting next to Jonah.  We sang Barrel of a Gun and Keep it Together on the way, me reaching for his hand, he singing loud and right in tune, staring at me and grinning.  So far, so good.

At Andy’s apartment, Jonah stripped all his clothes off almost the instant he passed the threshold. 

Bath time!

Happily he gobbled yummy light green grapes, a sandwich, Lindt chocolates (only the best for grandma’s boy), and caffeine-free black soda.  Then he got all hyper and ran into the bedroom, jumping on Andy’s bed and shrieking as we tried to dry him off.  He put on his big-boy underwear and dressed himself almost completely, then requested car ride?

So we planned to take him to duck park, which I should add to the glossary, since he goes there a lot these days.  It’s a local park not far from Andy’s place. My mom and Aunt T and D followed Andy, Jonah, and me to the park.  But when we got there Jonah suddenly acted all panicky.  No duck park! he cried.  More car ride?

I recognized the ridiculousness of the other car following us around as we gave him a car ride and I came to the frustrating conclusion that this visit was over – without nearly enough time spent with Jonah.

So we left.  I drove us all home in the rain, crying for the first 15 minutes or so, quietly, my tears rolling unchecked to drip on my jacket and jeans.  After a while I stopped crying, it stopped raining, and we stopped at Love Apple Farm to buy home-made peach-apple pie and fudge.

Andy gave him his car ride and brought him back to the apartment and, eventually, back to his house at school.  It is always Andy who has to hear Jonah crying – sometimes asking for home – when he leaves his son behind.  Andy has a certain quiet strength and presence that belies the pain I’m afraid he struggles with a lot.

On Sunday at Andy’s, Jonah was very aggressive and really hard to handle.  Andy and I are both wondering what’s the right thing to do here.  Are we visiting too often?  Do we have to leave him be for a while so he can acclimate, even if  “a while” means a month?  I will call his behavior specialist tomorrow, and we’ve got a meeting coming up at the school about Jonah, but in the meantime I’m left to wonder if he’ll ever get better, happier, more self-regulated… more able to keep it together.

Funny how I wonder the same things about myself.

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“I want to be where I’ve never been before; I want to be there and then I’d understand…know I’m right, and do it right – could I get to be like that?  I don’t know and I don’t know; it’s harder every day.”

~ Two Points For Honesty, Guster

I just typed for an hour about an unkind co-worker and how much it hurts, and my psychologist’s cool “time-release therapy”… about my shifting perceptions of Andy and my parents…about experiences with them, trying to put it all into perspective and be at peace with everything my life is now.

Then I deleted every word I’d written.

I know who reads my blog and I’m not here to hurt people or throw them under proverbial busses.  I don’t want to be subversive or accusing here – especially when none of it had a thing to do with Jonah, who is doing very well at school and in his house, they tell me, by the way.  I’ll see him Saturday and I should focus on that.  Plus my dad gave M and me tickets to see a show Saturday night, and I’m supposed to meet M’s sister on Sunday, so that will be cool.  Focus on the good.  Accentuate the positive. 

Be grateful, you whining little crybaby.

I should start an anonymous blog and vent there about anything I want.  But this sure ain’t that place, so here’s a recent picture of a smiling Jonah Russell instead.

That’s right, Boo.  Smile away.  Smile for us both.

I’m going to bed.

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I didn’t go to see Jonah this weekend.  Friday I took the day off work and caught a ride with some other folk to a friend’s son’s wedding in Brooklyn.  It was a beautiful day, & the wedding and reception went off without a hitch.

Strange timing, though.  Andy and I signed our legal separation papers on Monday.

Four days later I found myself sitting on a pew, in a big cavernous church, watching two people get married until death do them part.  I tried not to let it  make me all sad, or envious, or bitter, or any other dumbass emotion I’d have the tendency to entertain.

I forgot my camera, too, but I’ll share a cell phone picture of the reception table – lovely!

Anyway.

I miss Boo.  It feels too long for me to go two weeks without seeing him at all.  And when I call at night to see how he’s doing, he’s almost always already asleep.  It’s not like he’ll talk on the phone, and I don’t want the sound of my voice to upset him or start him pining for “home.”  Then again, I don’t want him to miss mommy and wonder where she is.  Of all the things I’ve had to kind of guess at with autism, this is one of the hardest.

Luckily Andy lives so close he can take Jonah to his apartment at least once a week, after the playground, then give him one or two much-enjoyed baths and feed him the “yummy-light-green-grapes” my mother brings along when she drives down every Saturday.

I think Andy actually visited Jonah three times this weekend, if you count tomorrow, because I think both he and Boo have the day off for Columbus Day.

Thank God and little baby Jason he’s down there, and has a bathtub and a big daddy heart as well to hold him close-by his only son.  I wrote Andy a Father’s Day poem a few months after Jonah’s autism diagnosis.  It applies to this day, for Jonah has been blessed with a fantastic dad:

Just Like Any Other Boy

You take your shirt off, hold me, newborn, to your chest,
your heartbeat drumming fa-ther, fa-ther, fa-ther –
and father arms, and unbelieving eyes, and warmth
so rocking, softly rocking, in your father arms I sleep.

You wear me in a baby sling, faced out so I can see.
You bend close to kiss my thistledown fine hair
and you are smiling, and jouncing me in jest, and singing
unashamedly off-key: the bear went over the mountain…

You see me spinning; hear me humming, seek a diagnosis,
your heartbeat drumming fa-ther, fa-ther, fa-ther –
now you hold me extra-special close, you whisper precious son
and place me before everything there was or ever will be.

You chase me on the playground past the toddlers who can talk
You bend close to kiss my thistledown fine hair
And I’m caught and tickled, giggling, just like any other boy
And you are smiling, and jouncing me in jest, and singing

You take your shirt off, hold me, two now, to your chest,
so rocking, softly rocking, in your father arms I sleep.
Your heartbeat drumming fa-ther, fa-ther, fa-ther –
You place me before everything there was or ever will be.

– – –

I, on the other hand, am maybe not so great a mom.  I don’t know.  I’m definitely not one of those born-to-be-a-mother moms who wanted three or four kids, special needs or not.  And mid-life has not increased my self-confidence in any arena.

I question my motives at every turn.  I require two different types of medication just to operate like a functionally employed human being, am falling far short of goal at what I’m paid to do despite my most earnest efforts, and wish only, really, to play the role of professional philanthropist.  I like people.  I trust them.  I’m a bleeding heart & want to help every cause that comes along.  Then when I’m inevitably betrayed in some small way I lose faith in humanity entirely…including faith in myself – as a mother, a partner, a daughter, an employee, a friend.

(I have a wonderful therapist and it’s obviously been too long since I’ve seen him).

It doesn’t help that it’s October ninth, my least favorite day of the year.  Ten/nine/eleven.  Nine years ago on this day my best friend Gina killed herself with a gunshot to the head.  I wrote ten billion poems afterward, like this one.  I guess I needed to, or I was going to go crazy.  Hell, I guess I went crazy anyway.

Every October 9th I buy a balloon, usually purple or blue, from the Party Warehouse, and I drive to Memory’s Garden, a park-like cemetery where Gina and I used to visit often to sit on a bench by a pond and talk.  Every year I go to the pond near the bench, I tell her I love her, and I let the balloon go.  Always she takes it quickly, removing it from my sight faster than seems possible.  This year the Party Warehouse gave me my dark blue balloon for free.  My God it was a beautiful day – 80 degrees, probably.

As usual, I released the balloon, managed to snap a picture of it with my phone (I forgot the camera again), put the camera down, and visually followed the balloon just above the tree tops until  POOF I couldn’t see it anymore, anywhere.

I’m sure the blue balloon on blue sky didn’t help me follow it up in the air, but I feel just as sure she got it.

Nine years.  Now she’s been gone just about as long as I knew her.  I hope all the memories don’t fade.

I can honestly say I’ve never been as close to another human being (except perhaps my son, but that’s a different kind of close) and I don’t anticipate I ever will be.  I’m blessed to have had that friendship at all.  Jonah was just 5 months old when she died, but I’m glad she got to see and hold him.

I ask her all the time to look after him.  Be his angel.  Keep him safe.  I wonder if this is delusion on my part, or if she hears me.  I’m pretty convinced she hears me.  I hope she comes for me when I die, and we can both look after Boo.

This concludes my stream-of-consciousness blog post for today.  I love bedtime, and am looking forward to waking up to a different day than this one.

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Another poem today:

Snozzberry Tulips

Willy Wonka dreams
tulips
in five fruit flavours
(mostly snozzberry)
grown on mint grass hillsides beside fizzydrink fountains.
Awakening, he plants a zillion bulbs.

PI poem – 3,1,4,2,8, & 6 words per line.

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There is a place beside myself inside a time
where sated muses sit upon a pot of soiled rhyme,
pretending nonchalance in planting story seeds.

You enter here through no known wall nor door,
unaware at once of what my wonderings are for
yet ready with applause at these, my simple deeds:

I capture clear a lily curled and drying on a sill;
I hold inside an iron fear, a withered strength of will;
my voice is of the meekly humbled, quietly it pleads.

– – –

There are, housed within the wombs of harvest time,
unborn tales of living inside nine months’ maritime
where we remember not of what it is or where it leads –

but tasting once, we sample air again, and breathe in more;
budding flora filling youthful lungs with life’s allure,
growing overnight at time-lapse photo breakneck speeds.

I know the push of independent sunlight made me ill
as if I rushed from birth to death in one swift angry kill,
and dying, became one who now in every way succeeds.

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“You must trust and believe in people or life becomes impossible.” ~Anton Chekhov

I changed my links page to add a few fun sites I found.  Please don’t take offense if yours was removed.  I may remove all the autism blog links and just link you over to fun and general mayhem. Or make categories, or something.

Speaking of mayhem, I was in NYC last weekend.  I’d won a sales contest at work along with office/teammate ‘Sister Sledge.’  It was to see a Yankee/Red Sox game, which was rained out.

The cool parts to me were the view from the Top of The Tower Restaurant at the highest floor of our hotel.  And the fact that I got to have a four-day weekend.  And also there was a U.N. meeting and we got to see all kinds of diplomats and limos; secret service, police escorts and that kind of stuff. 

Down the street were protesters with signs we were too far away to read.  

I think some of the UN peeps even stayed in our hotel.  The place was nice but not THAT nice.  Maybe the diplomats got the kick-ass rooms.  But staying in a hotel, having a day off, traveling – they’re treats in and of themselves. 

I love coming home.  Every time, without fail, I breathe deeper and easier once I know we’re headed back.  I’m just not a city mouse, I guess.  I’m too trusting to live in a big city – especially New York.

I have to trust.  With my boy so far away from me, I don’t really have a choice.  Andy is there and can take Jonah to his apartment, give him bubble baths and look him over.  If Jonah has a rash or his toenails are getting too long, Andy can report the rash and cut the nails.  Of course they won’t take care of him the way parents would – they have other kids to look after.  It’s as if Jonah’s suddenly the member of a family of several kids with autism and their many caregivers.  It could be a damn good reality show.  If nothing else, I doubt it would be boring.

I’ve been trying not to care that I don’t get to do all the little things with him anymore:  the everyday rituals:  cutting his little nails, giving him lots of bubble soap in his bath, singing songs with him as he gets dried off and dressed.

I miss watching him sleep.

In sleep, especially, he is indistinguishable from any other child.

Sweet dreams, mommy’s boy.  I’ll be there on Saturday with grandma and daddy to see you!

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My father and I went down to see Jonah today.  Armed with lunch, a couple of DVDs, a bag of toys and books for Jonah’s house, and one last donation to the upcoming fundraiser gala, dad and I set forth.  We talk easier than ever before, and share stories, and if the talk gets heated, or charged with emotion, it is okay.  It was not always okay, but it is now.  Now my relationship with my father is very good.  We chatted the whole way down and arrived just a few minutes before noon.

And so I give you this week’s “black soda” face, complete with crumb-on-lip:

And, of course, Jonah’s chosen swing:

“Mommy push?”  He asked, grinning.

I think his caregivers and teachers call me mommy, so that’s what he calls me now.  I still slipped and said mama, but I can get behind mommy – it’s a ‘nomenclature graduation’ of sorts.

His school encourages as much independence as possible, and they’re right to do so.  It was too easy for me to continue to talk to him (and treat him) more like a baby than a nine-year-old kid.  At his new school he helps do his own laundry, is almost completely potty trained already, and can attend to tasks in the classroom.  They really seem to like him.  It feels good, especially when they tell me about it.  His teacher wrote to me, in part:

“Jonah’s been doing very well adjusting to the classroom and staff…we all enjoy his presence a great deal. He’s a lot of fun to have in the classroom and VERY bright!  Yesterday was the first day we had some aggression since we’ve been back!!

 When we do group work, most of the time, he sits well and seems to enjoy the lessons. We’re all still learning so much about him and part of that is realizing when he needs to take a break from work.

Although he can sit and work with us for a while, there are times when he will get teary and asks all done work?  So now, we’re trying to figure out when he needs a break before he gets to that point.

When he does get a break, he is always good about coming back to the table and finishing the lesson.

 I can’t stress enough how much we all enjoy having him in the classroom!”

This was great to hear, aside from the aggression;  I enthusiastically forwarded her message to Andy.

I’m glad to know they are trying hard to understand what makes him tick.  I’m so happy when I get to see him — and I kiss, inhale, hug, hold him as tight as he’ll allow it – to carry with me until I can see him again.

It was hot on the playground today.   After we had our lunch at the picnic table, we went to the swing set and had  fun together, Jonah wanting to stay on his favorite swing.  Mommy push.  And push and push and push, higher and higher, singing Guster and pushing, Jonah sailing high in the summer-like sun.  Finally I snuck away to the shade and Pa kept him smiling:

One of his caregivers came out and said the best way to transition him when we leave is to go back inside the house with him.  It sounded reasonable to us, so this time when it was time to go, we said goodbye in Jonah’s room and then a careworker moved in and engaged him as we walked out.  Quickly.  Trying not to look back.

(Ripping the band aid off, as it turns out, was much easier than tearing it bit by bit).

On the drive back, my dad insisted on filling up my gas tank, even though I didn’t really need it yet.  Now that he’s gone and I’m home and it’s hours later, I’m reflecting on him and how, even when I’ve been mad at him, I’ve had to admit he’s a man of integrity.

An earnest, hard-working, genuine man.  A secret-keeper.  History lover.  A man with a work ethic.  A saver.  A man with an inner moral compass always pointing in the right direction – who’d always stop and defend another against hurt or hate.  Proud of his ancestry and family history.  A man who’d help you move and never take a dime for doing it.

A man who believes in giving people a chance and, if need be, a leg up.  He roots for the underdog and wants always to do the right thing.  When he says just try your best, he means it.  I think because he always tried his best.

He always tried.

If I had to pick a song to express him, inasmuch as you can ever encapsulate a person that way, I’d pick “Something Wonderful” from The King and I.

“This is a man who thinks with his heart,
His heart is not always wise.
This is a man who stumbles and falls,
But this is a man who tries.

This is a man you’ll forgive and forgive,
And help protect, as long as you live…

He will not always say
What you would have him say,
But now and then he’ll do
Something
Wonderful.

He has a thousand dreams
That won’t come true,
You know that he believes in them
And that’s enough for you…”

I’m grateful to have such a man as a father, and as a grandfather for my little Boo sweet boy.

I love them both very much.

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“The bear went over the mountain, the bear went over the mountain, the bear went over the mooun—taaain…and what do you think he saw?”  ~ Children’s song

I’m the mama over the mountain.  And I can’t help but feel bad for enjoying the view.  If I keep speaking in riddle and metaphor, maybe I won’t have to admit there is freedom and a calm happiness to my life now, and I like that.  I’m going to visit Jonah again with my dad this Sunday, but I skipped visiting him last weekend.

Instead I unpacked boxes from the apartment, did loads of laundry, watched tree surgeons cut up the giant maple killed by Irene, and visited my friend D at dialysis.  I watched Almanzo and Jack get along unbelievably nicely:

Jack’s such a big lummox his ball toy is a basketball:

And Almanzo loves to squeeze himself into boxes he’s a bit too big for:

(Andy will appreciate that, if he reads this.  Put the cat in the box…)

I did normal people things, got a lot accomplished, and felt as good as if I’d rested for a long, long time.

I really miss Jonah.  I was okay with skipping one weekend.

Are those things mutually exclusive?

Either Andy or I call every night to hear how he’s doing.  Lately he’s been aggressive, but they sound like they expect it and it’s nothing they can’t handle.  They like him, even, I think.  They think he’s bright. 

He’s funny, his teacher e-mailed me.  He’s such a pleasure to have in the classroom.  I don’t even care if she doesn’t mean it.  To picture him laughing and learning is wonderful.  I want to know he is happy and not hurting others.  And I’m looking forward to seeing him again; I’ll bring a picnic lunch for Sunday afternoon and hopefully it’ll be dry enough to swing and climb on the playground.

My father wants me to help guide how often he goes to see Jonah, at least for now.  He’s concerned, maybe even over-concerned, about whether his visiting will impede Jonah’s acclimation to Anderson.   My mother, on the other hand, is different about Jonah.  Every ounce of her wants to be with him, as much as possible, all day if she could.  She’s more of the just try and keep me away from my precious grandson type.

The fact that Andy lives five minutes away is key to everyone’s comfort level about this whole thing.  His presence in the same town is more appreciated than he probably knows.

Sometimes I feel guilty because I dare enjoy this new life where I’m not attacked every time I see my son.  I’m the mama over the mountain.  Selfish, maybe.  Surreal, definitely. 

And what do you think she saw? 

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