Christmas 2020

Christmas… it’s approximately 8 o’clock in the evening and I’m driving with the family to Sharon Woods in southwest Ohio. We’re going to see the Holiday in Lights outdoor light display. We pull into the park entrance, listening to Ozzie Osbourne’s Bark at the Moon.

“Put on some Christmas music,” Kristine says.

Gabby responds with “But this is so much better.”

I agree with Gabby, but don’t respond. Ozzie wraps the song with maniacal laughter. We continue driving thru the park, admiring the lights while Metallica’s Creeping Death begins. I think about the absurdity of it all, and chuckle quietly.

“What’s so funny?” Gabby asks.

“Nothing,” I say.

We’re a thousand miles from home, driving thru a holiday light display, just the four of us, listening to heavy metal music. Oh, and it is 13°F outside.

Ah… can’t… move… I’m so bundled up, lol.

We had decided to visit some of my family in Ohio for Christmas, leaving sunny Florida on December 20 (Sunday), to return on December 28 (Monday). This, despite the COVID-19 pandemic and constant admonitions for Americans to stay home, limit social gathering sizes, practice social distancing, wear face coverings in the company of others outside members of your household, etc., etc.

Obviously, we decided to take our chances, staying in a hotel one night, one person’s residence another night, and a rental home for five days. We traveled over 2,000 miles, eating at several restaurants across multiple states, and stopping at a half dozen or more gas stations along the way. During our stay in Ohio we came into close contact with family and friends outside of our household, seventeen in total. While we weren’t fastidious with regards to all COVID-19 safety protocols, we observed them to the extent possible. It is now New Year’s Eve, and none of us are ill yet, so I take that as a good sign.

We planned to spend the first evening of our trip in Beckley, West Virginia. I know it’s not the fastest route from Melbourne, Florida to southwest Ohio, but my mother insisted we go up Interstates 95, 26, and 77. She claims it’s a better, worthwhile route, but I think it’s only because she wants to pass thru her old hometown. I had no overriding urge to object, and accustomed myself to the idea of driving I-77 at night thru the Blue Ridge Mountains.

After being on the road for more than twelve hours, the latter part of it driving up and down Appalachian peaks, valleys, and switchbacks, we arrive at our hotel in Beckley. White-knuckle driving, if you want my opinion. Especially when doing it at night, and worse when fog starts to roll in (hence, the name the Great Smokies; the Blue Ridge and Great Smokies are all part of the Appalachian Mountains). I recall a cousin’s stories about extricating vehicles from West Virginia homes downslope from roads where driver’s lost control. Imagine, sitting at home watching television, and an automobile crashes thru the roof of your home.

We pile out of our van and I say to my mother, “We do this again, we are not coming this way. Ever.”

After checking into our rooms, Mom, Dad, and Gabby to one room, Kristine, Gracie, and myself to another, I crash onto a bed and fall fast asleep. I’m jolted awake at 2:30 in the morning, because Gracie has bounced off of my bed, onto the other in our room. I see Kristine forcibly putting Gracie into bed. Kristine has an angry face and is saying something to me. I don’t know what she’s saying, and I’m too tired to care. I close my eyes and go back to sleep.

After waking I learn that Gracie carried on for two and half hours before finally settling down to sleep, and only because Kristine had to basically lay on top of Gracie to get her to stay in bed. Before crashing into my bed, I did manage to block the door to our room with a chair and our cooler. Otherwise Gracie could escape our room. This trip isn’t sounding like too much of a good idea.

We finally arrive at my 89 year-old grandmother’s house after being on the road for eighteen hours, not including our overnight stay in Beckley. Gracie’s in a mood, pacing all over my grandmother’s house, squeezing her hands, and angrily biting down on her chewy, all at the same time. Gracie has squeezed her hands together so hard and so much that she’s already caused her skin to blister. I caution my grandmother not to let Gracie grab her hands.

“Grandma, do not let Gracie grab your fingers. She gets ahold of them, she may break them. I’m not kidding.”

Later that day, during the course of our conversations my grandmother asked me how many different medications the doctors have Gracie on.

“A lot,” Kristine says.

We spend the day and evening at my grandmother’s. Gracie, throughout the evening, throws herself onto a couch, facedown, and proceeds to press on her private area for all she’s worth.

“I don’t know how much more I can take of this,” Kristine says.

I don’t know how much I can take either. Thank God we’re headed to stay in a rental home the following day. Which is why we choose to spend Christmas by ourselves. Queue the Ozzie laughter…

Kristine in front of the Queen City.

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Gracie goes to DC

Wow… I cannot believe it’s already been a year since I last posted.  Just haven’t had the will in me to do so.  Today I feel like telling a story, so here goes.


Summer of 2018…

A lightning bolt streaks across the daytime clouds, directly over my head, and the air splits with thunder.  I nearly jump out of my skin because of it.

I’m walking thru downtime DC in the midst of a downpour, that I later learn flooded Arlington Cemetery and made national news.  The streets are deserted and I am without an umbrella or poncho, and am soaked to my underwear.  My feet squelch inside of my sneakers as I slosh thru pop-up streams running down the streets.  The water is racing over the tops of my shoes and about my ankles, and I avoid what appear to be deeper streams of water.  I try not to think what filth the water might contain.  I might as well be swimming in the Potomac, as wet as I am.

But I’ve no choice but to plod on, lightning, thunder, and filthy water be damned.  I pray I make it to my car before I’m struck by lightning.  Despite the thunder nearly giving me a heart attack, and the sound of rushing water, I can’t hear much else because I had to take my hearing aids out so they wouldn’t get ruined.  I’ve got my aids wrapped in plastic, tucked away in one of the pockets of my sodden cargo shorts.  I hope no one tries to communicate with me along the way.

What does this have to do with Gracie, right?  Well, I had the bright idea to take Gracie along with us on a three day sightseeing tour of our nation’s capital.  We had flown to Ohio to first visit with some family, then rented a small SUV for our road trip to DC.  Gracie’s sister, Gabby, is growing up and I wanted us to see DC together before she’s on her own.  Oh, and it had bee

n thirteen years since the last time I flew with Gracie.  At that time I said to myself I’d never fly anywhere again with Gracie, but that’s another story.

The trip there was uneventful.  My jaw dropped open when we arrived at the home where we were to stay, in Great Falls, Virginia.  The home was massive, and inside was something like you would see in an architectural magazine, or Better Homes and Gardens.  I looked up home prices for Great Falls and found out the average home price is just over a million dollars.

After arriving, we checked in with our hostess.  The hostess was the owner of the home, and she rented out the bottom half via Airbnb.  Although we were initially impressed with the hostess’s home, it wasn’t all it was cracked up to be upon closer inspection.  The basement was very nice, fully carpeted and fully equipped, and it walked out to the backyard where there was an in-ground pool.  But the basement had a musty smell, and the pool was filthy.

Despite the smell and dirty pool, I rationalized reasons to stay at the home, thinking we’re really only there to sleep, since we’re going to be spending our time all over DC.  We had purchase bus tour tickets so we could hop off and on at all the places we wanted to see.  We were so excited, especially Gabby, who wanted to see the United States Holocaust Memorial Museum above all.  I know, morbid, right?  But at that time, Gabby was fascinated with the history regarding the Holocaust, WWII, and so on.  She likes history, and loves reading historical fiction and about history.

The day after arriving in Great Falls, we wake early, have breakfast, and head to DC.  While driving there I look at the sky and don’t like the looks of the storm clouds gathering on the horizon.  Screw it, we’re going to DC, come hell or high water.  First, though, we need to find a parking lot in DC, find our bus, and start our tour.  We manage to find a parking lot, and after parking our vehicle, we pile out of the SUV and start walking around DC, looking for one of the buses that we’re supposed to get on.  After not having any luck finding a bus, or where one of our bus stops is located, we decided to just trudge on to the Holocaust Museum.

After arriving at the museum, we pay for our admission and begin our tour of the museum.  We’re maybe an hour into our tour, and Gracie has a meltdown.  The place is packed with people, and there’s so much more to see.  Kristine tells me she’s leaving the museum to take Gracie outside and away from the crowd of people.  She also tells me to continue our tour of the museum.  I hate that the first day of our tour in DC has come to this already.  I reluctantly agree, and watch Kristine and Gracie move away from Gabby and I.  Thirty minutes later Kristine calls me on my cell and asks me to cut our tour short.  She’s outside and the Capitol Police are questioning her, wanting to know if Gracie is okay and if Kristine needs assistance.  I tell Gabby we need to go, and now.  I bulldoze my way through the crowd, with Gabby close behind me.  I hate that Gabby doesn’t get to see more of the museum.  To her credit, Gabby says nothing as we find our way outside to where Kristine and Gracie are.  For Gabby to say nothing, when I know she’s upset, means she must be seething inside.

Don’t they look happy?

Gabby and I finally get to where Kristine and Gracie are, and the skies open up shortly after.  We decide to call it a day and head back to the home we’re staying in.  Later, in the early evening hours, Kristine and I head upstairs to go to the garage and our vehicle to retrieve some of our belongings.  We pass thru the home’s kitchen and run into our hostess, who is drinking

wine from the biggest wine glass I’ve ever seen.  We stop for some polite conversation, and to our amazement we learn our hostess has an adult son with severe autism, and that he now lives in a home for people with special needs.  We learn she’s divorced, and has at least one other adult child.  I look around, and the house feels so empty…


A tired Gabby…

The following day I tell Kristine to go with Gabby to DC, and that I will stay the day with Gracie in the basement of our hostess’s home.  I while the day away taking care of Gracie, and when I’m not doing that, I get lost in some piece of fiction I’m reading.  The day after that, Kristine and I trade places, and I go into the city with Gabby.  Wherever Gabby wants to go, and whatever she wants to see, we do that.  We pack as much as can humanly do into one day.  At the end of our day together in DC, we stop for dinner in a pizzeria, and Gabby rests her head atop her arms on the table.  She’s exhausted, and so am I.



It’s unfortunate Gabby, Kristine, and I weren’t able to see the sights of DC together.  But, we made the best of the situation, as well as could be expected.  The long, ten hour drive was quiet, scenic, and rather peaceful.  I have thought often since then about wanting to take Gabby back to DC, so that she can get the full tour she wanted of the Holocaust Museum.

The Mansion

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Them’s gator in the waters…

alligatorI will never forget the feeling of dread when I saw the door to our condo was wide open.  My youngest daughter, my mother, and myself had just come back from an evening swim at the community pool.  Kristine and Gracie had stayed behind at the condo, as Kristine was tired and didn’t feel up to watching Gracie in the pool.  Kristine has likely fallen asleep and Gracie may have escaped into the night.  I’m thinking, “Please, God, please let Gracie be in there.”

Let me back up a bit.  A while back we decided to take a weekend trip to Busch Gardens, as we were tired of the Disney theme parks.  So we opted to do something different, and rented a condo in a gated community on a golf course.  This community also has an awesome pool and mini waterpark.  If I’d known about the latter, I would have skipped Busch Gardens altogether.

After driving across the state of Florida and then spending all day at Busch Gardens, we enter the grounds where our condo is located.  As we’re driving thru the community, I notice several small and medium-sized ponds with signs warning of alligators.  These signs are rather ubiquitous throughout Florida.  Despite that, I notice them anyway.

We check into our condo, looking forward to bedding down for the night.  Everyone except our youngest, of course.  She wants to go swimming.  With reluctance, I agree to take her to the community pool, and my mother decides to join us.

The water is refreshing.  It’s nighttime and the pool is lighted thru lamps in its walls.  A slight breeze is rustling thru the palm trees, and there are only a few other swimmers enjoying a late-night dip.  The scene makes for a very idyllic one.  Gabby is enjoying herself, hanging on to her daddy.  When we’re ready to head back to the condo, we wrap towels around ourselves and begin our long walk back thru the darkness.

As we come around a bend, I notice our condo right away.  The door is open, and I say to no one in particular, “Why is the door open?”  I quicken my pace and close the gap between myself and our condo.  I step into our condo and see that Gracie is pacing the floor, and Kristine is on the sofa, fast asleep.  Attracted by the light, there are bugs flying about in our condo.  My relief is palpable.

I say Kristine’s name, sharper than I intended.  “What?!” she says.  Kristine awakes quickly, with a look of confusion on her face, seeing her husband, Gabby, and her mother-in-law all staring at her.  I know that she had locked the door after us when we left to go for our swim.  Gracie must have opened the door.  For reasons we can only guess at, Gracie decided to stay with her momma.

I investigate the door.  It has a deadbolt, but the kind that allows a person on the inside to unlock it and open the door simply by pressing down on the door lever.  I place several obstacles in front of the door before we retire for the evening.

The next morning I’m sitting on the condo’s back patio, looking out across a pond and sipping my coffee.  The edge of the water is about fifteen feet from the patio.  Then I detect motion across the far side, underneath some tree limbs and foliage just above the water’s surface.  I watch it intently to confirm my suspicions about what is causing the ripples in the glass surface of the water.  And then I see its eyes…

I calmly get up and go inside to our condo.  “It’s time go, people,” I say.

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Angels We Have Heard on High…

I challenge anyone to listen to this little girl without getting a tear in their eye.  Those that manage not to do so either have ice in their veins, or a stone-cold, dead heart.

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Papaw manages a lucky shot

I’m at work, deep in concentration on the task before me.  My cellphone rings, and I look at it to see the Caller ID displaying “Unknown” and a number I don’t recognize.  However,  the number is local, and I think to myself that I should probably answer the call.  There’s no telling what the call could be about.  Sighing, I answer the phone.

“I need you to remain calm.”  It’s Kristine calling me, and right away I am steeling myself mentally to receive the worst news a parent can receive.  Gracie has managed to get herself killed somehow.

“But she’s okay,” says Kristine.  I’m clenching my teeth now, struggling to keep my emotions in check.  I take a deep breath.

“Are you there?” Kristine asks.

“Yes,” I hiss through clenched teeth.  “What’s happened?”

Kristine informs me that Gracie walked out of her classroom, and out into the world.  Yeah, I know.  How does this happen?  Gracie’s classroom has an exterior door, a common feature at schools in Florida.  Anyway, Gracie managed to leave the school grounds, cross Commodore Boulevard in front of the school, and turn right to walk to the intersection of Commodore and Eau Gallie Boulevard.  The latter is a major east-west highway, with four lanes of traffic.  Believe me when I tell you that crossing Eau Gallie can be dangerous, given the volume of traffic on this highway.

Gracie obviously must have thought crossing Eau Gallie didn’t seem to be in her best interest.  Instead, she turned left and wandered into the parking lot of an office building, entered the office building, and proceeded to wander up and down the building’s main aisle.  A Good Samaritan noticed Gracie, and thought something wasn’t right with what he was seeing.  This person decided to call the Melbourne Police, while keeping a watchful eye on Gracie to make sure she wouldn’t endanger herself.

I tell Kristine I’m leaving work to go straight to Gracie’s school, so I can speak with the staff about the incident.  Kristine asks me to wait for her before I go into Gracie’s school.  So both of us leave our places of employment, and meet at Gracie’s school.  We go into the school’s office and ask to speak with the principal.  We’re escorted into the principal’s office to meet with him and another administrator.  I think I see a look of fear on their faces.  I express my outrage in mostly calm fashion, although I did let an F-word expletive slip out during my statements.

It is a miracle that Gracie wasn’t harmed.

On a different subject, yeah, I said I was pulling the plug on this blog.  But I made no promise to do so.  Maybe I will, maybe I won’t.  I don’t know.  We’ll see when the bill comes due.  Cheers.


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Gracie’s EEG

Gracie getting her EEG.  Going on eleven hours, and may need to go another thirteen.

UPDATE (from Kristine)

Gracie was transported from Viera Hospital to Florida Hospital in Orlando last night, where she is getting a 24hr EEG. Last night Gracie had a CAT scan.  At 3 or 4 o’clock I may find out if she is getting released today. Doctor said if they do not see anything on EEG they most likely will want her to stay overnight again. Neurologist said Gracie will be on medication for seizures. The neurologist was very thorough.

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Another ER trip

In the ER again with Gracie.  She’s had her second seizure in four days, which makes for a total of three now.  Don’t know what’s going on.

UPDATE (from Kristine)

Gracie was transported from Viera Hospital to Florida Hospital in Orlando last night, where she is getting a 24hr EEG. Last night Gracie had a CAT scan.  At 3 or 4 o’clock I may find out if she is getting released today. Doctor said if they do not see anything on EEG they most likely will want her to stay overnight again. Neurologist said Gracie will be on medication for seizures. The neurologist was very thorough.

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Counting gummies

gummiesKristine takes Gracie to a neurologist, given Gracie experienced a grand mal seizure a few weeks ago.  During Kristine’s conversation with the doctor, Kristine mentioned Gracie’s difficulty with sleeping.  The doctor suggests a product he sells right out of his office, Sundown Naturals Melatonin Gummies.  Kristine buys a bottle with the intent of helping Gracie sleep better.

I arrive home from work later that same day.  Upon entering our home, Kristine proceeds to tell me about her day.

“Hi.  I took Gracie to the neurologist today, and he told me to try this to help Gracie sleep,” Kristine says, pointing to a bottle of  melatonin gummies on our kitchen counter.  “I’m going to try one.”

“I’ll try one too,” I say.  I look at a clock, making a mental note of the time.  It is almost 7 PM.  Kristine and I pop a gummy into our mouths and happily chew away.  Not bad… only a slight medicinal taste.

Later in the evening, near 10 PM, I’m sitting in a recliner watching TV.  Wow.  I’m so tired. Kristine is sound asleep on the couch next to where I’m sitting.  I hope I can make it to our bed.  I’m so tired I don’t bother to wake Kristine up to get her to move to our bedroom.  So tired I don’t even bother to brush my teeth.  So tired I hope I make it to rest my head on my pillow, as a spot it from afar upon entering our bedroom.

I wake up the next morning, feeling actually refreshed.  Not like Death warmed over.  I get up and head to our kitchen, and find Kristine making coffee.

“Wow.  That stuff works,” I say to Kristine.

“I know.  Karen tried to wake me several times, to get me off of the couch.”  Karen is my sister-in-law, who has been staying with us to help out with Gracie.  Kristine adds, “I think it helped Gracie too.”

“How would you know?  We were both passed out!” I say.

“And I gave Gracie two of them!” Kristine exclaims.

Gracie stumbles thru our kitchen, still half asleep…

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Fixing Gracie

Always a project...

Always a project…

Fixing Gracie.  Not literally, no, no.  I mean metaphorically.  Fix her so that she doesn’t destroy things.

I recently had been thinking about changing the oil in Gracie’s dresser, given all the miles it has traveled as of late.  The dresser is solid wood, and is very heavy.  Gracie recently has been pushing it all about her bedroom.  When she’s not doing that she’s opening the drawers the little bit she can, taking stuff out of the drawers, and either chewing on it and/or strewing it about her room.  The drawers have child locks on them, but the locks allow the drawers to open about two inches.

Last week we changed our satellite TV service, and decided to move service from one of our other TV’s to Gracie’s.  Prior to that Gracie watched movies on DVD or via Netflix.  After getting home from work the day our service was changed, I went into her room to check out the installer’s work… sigh… this is why I have to do things myself.  Cables everywhere, and a receiver on top of a well-traveled dresser.  It wasn’t but a few days later that Gracie decided to take the dresser for a ride and ripped all the cables out of their connections, and broke the wall plate of the receptacle into which the power cords were plugged.

I put everything back in its place, reconnected all the cables, etc.  Later that evening I go to check on Gracie and I find the dresser has been moved again.  The receiver is dangling underneath the TV, hanging by its cord.  I get some tools from our garage, return to her bedroom, and dismantle Gracie’s source of televised entertainment.  I move her TV and all its accoutrements to a more secure location in our home, with plans for the coming weekend to fix Gracie.  It’s 11:30 in the evening when I finish, and I need to get up in less than six hours to get ready for work.

This dresser is going nowheres!

This dresser is going nowheres!

I basically bolted Gracie’s dresser to her floor, hid all the cables in a conduit fastened to her bedroom wall, and strapped the TV satellite receiver to the side of the dresser.  Flush with satisfaction, I use my phone to take pictures of my handiwork and send them off to Kristine.  Gracie’s mother is in Michigan on a business trip.

I need a better plan for keeping Gracie out of her drawers. Make that plans, plural.  And sometime before or after I address the drawer situation, I have another project to tackle:  Gracie’s window blinds.  She is destroying them.  I’m leaning towards replacing the window with one that has blinds between the interior and exterior panes of glass.  That will set me back a nice chunk of change, no doubt.

Fancy entertainment center.

Fancy entertainment center.

At this moment Gracie is pacing the family room floor, looking for something to get into.  She stands with one foot in Mitsu’s water bowl (Mitsu is our dog, an eight-month old Akita).  Gracie walks over to Mitsu, who’s sprawled out along the floor, napping.  Gracie stands over Mitsu and sticks a foot into Mitsu neck.

“No, Gracie!  Leave Mitsu alone!” I yell.

Gracie wanders away from Mitsu, over to the door leading out to our rear patio, and turns the doorknob.  I’m waiting for the day she figures out how to operate the deadbolt.  What do I do then?  Eh, when we cross that bridge.  And all during this time, while writing this post, Gracie has been humming non-stop.  It’s maddening.  Even when she’s not here, I think I hear her humming.

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It finally happened…

brain cellI’m on my lunch hour from work, and I just finished eating lunch at Jersey Mike’s (one of my faves).  It’s an off-Friday for me, but there’s too much to do.  But still, life is good.  Full belly, beautiful day, and the day is shaping up to be very productive for me.  My phone rings and I glance down to see who’s calling.  A local number, but no name.  That can’t be good, I should probably answer it.  Reluctantly I pick up the phone.  “Hello.”

“Hi.  I’m calling to inform you that Gracie had a grand mal seizure today.”  The woman on the phone with me sounds too cheery for me.  Christ, could you at least lead me into it?  Whatever happened to killing me softly?

I really don’t know what to make of this information at first.  Did the staff at the school just see some unusual behavior and assumed it was a seizure?  “You know, Gracie has a lot of unusual behavior.  Are you sure someone isn’t mistaken?”

The school staff is adamant they have witnessed a seizure in Gracie.  They describe all the classic symptoms of a grand mal seizure.  I’m told I need to pick her up and take her home, as the staff doesn’t want to risk Gracie seizing on the school bus.

I think about the doctor visits we’re going to have now, as a result of this latest event.  I’ve always known that epilepsy is more common in people with autism, than those without autism.  When people asked Kristine or myself if Gracie experiences seizures as a result of being autistic, the answer was always no.  People who asked this question always seemed surprised at our response.  I thought somehow we might have gotten lucky, as far as Gracie was concerned.  But two days before her summer vacation, and it finally happened.

I send Kristine, Gracie’s mother, a text telling her about Gracie’s seizure.  I learn later that one of Kristine’s coworkers seemed blown away by how calmly Kristine handled the news.  I know exactly how Kristine feels.  Numb.  It takes a lot to elicit any sort of emotional response from us these days.

I get to Gracie’s school and find her with a half a dozen school staff members hovering over her.  She hates that, people hovering over her.  But I know they’re only concerned, and are trying to help.  She’s pale, and looks confused.  When we arrive at home, Gracie goes straight to her bedroom, lies on her bed, and begins to nap.  Her caretaker says in all the months of watching her, she has never seen Gracie go straight to bed after getting home from school.  Gracie went to her bed around 1:30 PM, and seven hours later she shows no signs of wanting to get out of bed.  She slept right through dinner.

What caused Gracie to have a seizure now?  Is it an effect of sleep deprivation?  She stays awake almost all hours of the night for days on end.  Her sister took to sleeping on a futon in our bedroom, because of all the noise Gracie makes in the middle of the night.(screaming, slamming her bedroom door, and banging on her bedroom walls).  Our house has a split floor plan, so the girls’ bedrooms are on one end of the house, next to each other, and our bedroom is on the other end .

Or was the cause due to taking Gracie off of almost all the supplements she had been taking?  Maybe it’s a combination of all of these, or maybe not.  Who knows?

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