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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Ain’t no fun waitin’ ’round to be a millionaire…

Gracie sunning her soles...

Gracie sunning her soles…

It’s damn near impossible to get anything done around here, it seems.  Between having to keep a watchful eye on Gracie and our puppy, Mitsu, working on anything else is impractical.  Things like repairing the back patio screens, patching the hole in one of Gracie’s bedroom walls, fixing the backyard fence gate, blowing the patio off, fastening loose boards to the fence rails, etc.  Kristine and Gabby are out for a Girl Scouts meeting, and I thought I could try to use my time effectively to get some chores done.  I bring Mitsu outside with me, and she immediately commences with puppy mischief while I try to accomplish something.  Digging holes to the center of the Earth, eating what’s left of my grass, and attempting to kill the Big Orange Snake on our patio (the extension cord connected to my blower).  Gracie has to be put in her room, lest she try to stir up trouble too.  Earlier, before Kristine left, I check on Gracie and find her with her feet up on her window.  She’s done this only because Kristine raised Gracie’s blinds.  “No!  Don’t close them!  I want to let some light into Gracie’s room,” Kristine says.  Sorry, OSHA rules say the blinds have to come down.  Safety hazard, you know?  I remove Gracie’s feet from the glass and lower the blinds.

Anyways, I gave up on my home projects for now.  They’ll just have to wait until Kristine and Gabby return home.  So I thought I’d put a post up.  Easy for me to do, since I can’t really do anything else but sit in my family room and watch Gracie and Mitsu out of the corner of my eye.

Mitsu, or Shine

Mitsu, or Shine

Mitsu is finally learning Gracie is different, and mostly leaves Gracie alone now.  It was kind of sad in the beginning, after we brought Mitsu home to us.  Mitsu tried many times to get Gracie’s attention, all to no avail of course.  The most poignant moment was when Kristine was giving Gracie a bath, and Mitsu went into the bathroom, stood up on her hind legs, and placed her front legs over the edge of the tub to look in on Gracie.  Mitsu stood there and watched Gracie for a long while.

And now the reason for today’s post title:  Ain’t no fun waitin’ ’round to be a millionaire.

For those of you who know me well, I love rock ‘n roll.  Especially AC/DC.  Every time I hear the aforementioned song, I think about all the ludicrous things I’ve done in my life, my attempts to get ahead.  Some have paid off, most have not.  In the end, at least nobody can say I didn’t at least try.

I look back and I’m frankly embarrassed at some of the things I’ve done.  Fell sucker to MLM’s, believing I’ll be different from the thousands who’ve gone before me.  Herbalife, anyone?  Ask me how, I’ll show you!  Went to the rah-rah sessions and all.  Wow… kind of weird witnessing those scenes.

Who want’s to be a millionaire?!  A flash of hands in the air, the speaker throwing out 100 Grand bite-size candies to people desperate to make a change in their lives (myself included amongst them).  This scene harks back to my Primerica days.  “Write down all the names of all the friends and family members whose telephone numbers you know!  Done?  Done yet?  Yes?  Now call them!  You can help them!  If you really want to succeed, call them!”  Sickening, recalling those moments.  Some of you might not believe I was a victim to such silliness, but I was.  Not so proud that I feel that I have to hide it, though.

The MLM huckster picks me up at my home in his Mercedes.  He believes in me, tells me I’m what he needs, together we’ll rule the insurance and finance industries.  I’m on top of the world, riding in a Mercedes, visions of grandeur in my mind.  I ace my insurance exam in order to sell insurance products.  Meanwhile, a part of me remains objective, not liking many of the things I’m seeing.  The business I was in was cutthroat, people poaching other people’s potential clients, anything to make a buck.

At the top of the pyramid was the Mercedes guy’s boss.  A group of us ‘special’ people get an invite to boss-man’s home.  Crazy, filthy rich this guy is.  A basketball court in his house?!  And a pool?  Then an invite to Mercedes guy’s house.  I’m expecting a cookout, bring my wife and mother-in-law with me, telling them what a great guy he is.  We get there and all there is to eat is sheet cake and punch.  Empty calories, just like all the promises that were made to us.

Like a house of cards, the pyramid collapses.  Mercedes man disappears, and I quit the biz.

Then I learn more about the world of finance, i.e., equities, option contracts, etc.  Even more sharks in those waters.  It’s a zero sum game, for every winner, there’s a loser on the other end.  You can trade on margin, lose everything, and end up owing your broker thousands of dollars.  I still trade, but my enthusiasm for the markets has waned.

Why do I tell all of you this?  Just another story or collection of stories about the lengths that some parents will go to provide a better life for their child.  When I was going through all that I described, I had one person in particular in mind, and that was Gracie.

Mitsu is looking at the door.  I’m thinking Kristine and Gabby are home now, and I can return to my chores.  Cheers!

 

 

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Six month update, and more random musings

six monthsHey everyone, thanks for taking time to read Gracie’s blog.  I appreciate all taking a moment to delve a little deeper into our lives, and gain a better understanding of those who have severe autism, the impact autism has on our lives, and so on.

I’d planned to update everyone on Gracie’s progress, post-stem cell therapy, after one month, three months, six months, and then after one year.  Well, it’s been six months now.  No effect to date, as far as I can tell.  Five thousand dollars for nothing, it seems.

Dr. Udell told us not to pursue stem cell therapy, as he didn’t think there was any benefit to be gained.  He told us a story of a mother who spent $60,000 $120,000 getting her child three separate stem cell therapy treatments outside of the United States, and how the mother stated she thought the treatments helped her child.  Dr. Udell asked the mother, repeatedly, if her child was talking yet.  The mother continued to prattle on about everything else, avoiding the doctor’s question.  When she could no longer avoid the doctor’s question, she finally admitted to him that, no, her child still was not talking.  Needless to say, I won’t be telling Dr. Udell we pursued the same therapy for Gracie.  I suspect he knows, though.

Oh, we received the results of the chromosomal microarray analysis, or the CMA.  We learned that as far as the doctors at Lineagen can tell, Gracie has no genetic variation known to have a medical impact. Although the cost was covered by insurance, that was another $5,000 dollars down the drain.

I’ve been pondering a lot of things, as of late.  All the things we do for Gracie, the ways her autism has affected our lives.  I think back to the time I was concerned about Gracie spending hours on end in her bedroom, constantly flicking the lanyard attaching her chewie to her shirt, with little else to stimulate her.  So we bought her a television with a DVD player built into it, and mounted the TV to one of her bedroom walls.  I parked her dresser in front of it, hoping she’d leave the TV alone and not destroy it.  I bought her a Baby Bumble Bee video set thinking that will stimulate her, along all the movies we have for her.  I even bought Gracie a Roku stick so I could stream movies to her television, thinking I could provide even more variety for her.  Gracie doesn’t seem to care for any of it.  She’d rather lay in her bed and flick her lanyard.  I still put her movies on.  The Baby Bumble Bee videos, not so much.  And the remote never worked for the stupid Roku stick.  Didn’t feel like messing with returning the Roku stick, so I downloaded the Roku app to my tablet to work the streaming stick from it.  Problem is, nobody else knows how to work the Roku.  Altogether, five hundred plus dollars for, eh, not so much.

A few months ago Gracie broke the keyboard on my laptop.  Inspired by a coworker of mine, I watched a Youtube video on how to replace my keyboard, ordered the replacement, and did the repair in less than 15 minutes.  For a lot less than what the Geeksquad would have charged me.  Then Gracie took to climbing up onto our desk in the family room (where my laptop resides).  Thus, we were forced to relocate the desk to our living room, which Gracie is unable to get into.  Then Gracie started messing with all the wires and cables running from the wall to our TV in the family room.  So I had to run channel raceways or cord covers along the baseboards to hide all the wires and cables.  Problem finally solved!  Another 15 minute job by Denny!  The cord covers look a lot better too.

There’s a family that lives in our neighborhood.  We see them in their front yard whenever we pass them by, going about our business.  The mom and dad, with normal children, all playing together, happy, having good times.  I am so envious of them, as Kristine and I could never do the same.  One of us always has to be watching over Gracie, making sure she’s not doing something to harm herself, or worse, doing something that might get her killed.  We live six miles from the nearest beach, yet we rarely go.  It’s just not a fun thing for us to do.  When we do go, Kristine has to hold one of Gracie’s hands while I hold the other, lest Gracie bend down to pick up sand and place it in her mouth, or place her hands in the sand and then rub it into her eyes.  When we do go to the beach, we have to control the situation tightly from the moment we step out of our car, until Gracie is safely ensconced back into our car.

This past October Kristine, Gabby, and I took a long weekend to visit family in Long Island, New York.  It was the first time I can recall us ever taking a trip somewhere without Gracie.  Just three days away, and I counted it as the first real vacation Kristine and I have had in fourteen years.  We spent the first day with Kristine’s extended family, the Surace’s and Piciullo’s.  One of Kristine’s cousins has a special-needs child also, and her name is Stephanie.  What a beautiful little girl she is, and I was touched by the love all of her family displayed for her.

We spent the next day in New York City and crammed as much as we could into that one day.  Took the LIE into the city to Penn Station, toured an exhibit, went to Central Park, hailed an Uber and a regular taxi ride, did a double decker bus tour during the day and in the evening, took a ferry to Ellis Island and the Statue of Liberty, went to Zucker’s for a bagel, visited the Ground Zero Memorial, had dinner at Bill’s Bar and Burger, and stayed overnight on the 34th floor of the Marriott in downtown Manhattan.  We were exhausted upon our return to Florida, but it was worth it.  I said to Kristine that we’ve got to do that again, get away.  We owe our little respite to my parents, who stayed with Gracie in our home to take care of her while we were gone.  Some have questioned why we didn’t take Gracie with us to New York.  The answer is simple:  there is no way on God’s green earth we could have kept her safe and have enjoyed ourselves at the same time.

Some time ago I had made a promise to myself, that Kristine and I would begin trying to enjoy our lives a bit more.  I felt like I was living in the movie Groundhog Day.  Wake, work, home, bed.  Weekend. Wake, work, home, bed. Repeat.  We attempted to have a monthly date night, but sitters we can trust are hard to come by.  We went a few months without date night.  I couldn’t take it any more.  I was slowly going stir crazy.  So recently I called a young woman who had watched Gracie before, and worked out an arrangement with her.  She agreed to watching Gracie every first Saturday of each month on a rolling three month basis.  Should things change, we’d get two more date nights and two months to figure something else out.

Three weeks ago we got our chance to finally go out and have dinner, Kristine and I.  We went to this Cuban restaurant on beachside that we’d been wanting to go to for a while.  Nice place with a romantic setting, including a guitarist playing Cuban music.  Had to put reservations in with the restaurant in order to assure seats.  The hostess seated us next to a party of three other couples.  Unfortunately, they were some of the most obnoxious people we’ve ever had the displeasure of dining next to.  They acted like the kind of people that get to go out on the town all the time.  One guy was a know-it-all, going on and on about all things related to computers, and one of the women with the party was saying stupid shit like, “The Spanish word for fish is pescado.”  Yeah, we didn’t stick around for dessert.

Sippy cup tethers… I’m tired of Gracie throwing her cups.  But the commercially available products that are out there in the world just don’t seem sufficient.  I did an online search for sippy cup tethers.  To my surprise, sure enough, you can buy almost anything on Amazon.  But the tethers are mostly made for toddlers in strollers or high chairs, not 13-year old autistic girls with a 90 mph knuckle ball.  And one I liked was made more for cups that are shaped like dumbbells (so the tether can’t slip off of the cup).  Then I found an article about how to make your own.   This past week Gracie threw her cup, once again, while we were eating dinner.  Without thinking, I reached up with my left arm and caught it.  I immediately regretted doing so, clutching my left shoulder, groaning in pain.  I’ve a partial tear in one of my left rotator tendons.  I’m getting old.  Or brittle, as one of Kristine’s nephews said to me.  Ha ha, I thought to myself.  Don’t worry, you’ll be in my shoes one day soon enough.  Anyway, I really should make that tether for Gracie’s cup, or at least stop trying to play outfielder with them.

Finally, the kicker for this post.  Back in mid-November we learned Gracie’s lawyer was finally going to move forward with our lawsuit against Brevard County Schools.  For those of you who might not know, last year one of the teacher aides in Gracie’s class abused her.  The person responsible is still employed with the county school system, despite my request to the principal to terminate this person’s employment or face legal action.  Once I learned the school wasn’t going to take what I considered to be appropriate action, and that the local district attorney wasn’t going to press charges, I felt that I had no other choice but to contact a lawyer.  I’ve never doubted for a moment that any lawyer who reviewed Gracie’s case would see the abuse perpetrated upon Gracie warranted a lawsuit.

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Greetings, 2016! And goodbye to all the years since…

This doggy looks like I feel sometimes!

This doggy looks like I feel sometimes!

Where to even begin?  Today is a new day, a new year.  I think back over not just the past year, but the last fourteen.  I don’t know why a particular memory keeps coming to the fore, but the memory is of me sitting on the steps leading up to our bedrooms in our old house in Ohio, with my head in my hands, wondering how I was going to make everything work, how I was going to continue on the way I was.  I remember looking through our picture window, seeing that it was wintertime, cold and damp outside, the leaves stripped from the trees in our front yard.  A bleak picture matching how I felt on the inside.  At that time I was working not only full-time as an engineer, but I was also working a second job as a handyman on the weekends.  I was even working my second job on some nights during the week, after already putting in a full day at my ‘real’ job.  During one particular stretch, I realized I had worked seven straight weeks without taking a single day off.

Some of the things I did to make ends meet seem incredible to me now.  Putting a new roof on a dilapidated garage, hoping I don’t fall through the roofing slats, and then seeing my partner plunge through the roof up to his armpits.  Working on rental properties inhabited by tenants with bad personal habits and even worse hygiene.  One job had me replacing the wax ring that goes between the toilet and floor, only to find out the floor underneath was rotten, and the joists underneath infested with termites.  In the middle of that job I was standing on the dirt floor of the cellar, the entire floor and supporting joists of the bathroom removed, and the floor of the adjacent hallway at about the height of my chest. Meanwhile, the tenant was tying one on, drinking Red Bull and vodka in the middle of the day, smoking like a chimney.

I remember working many jobs solo.  Long, lonely days, lost in my thoughts as I slogged away at hanging,  finishing, primering, and painting drywall.  Cutting down trees, clearing brush, rendering it all into chips, in all kinds of weather.  Never nice weather it seems, whenever I worked outside.  It was always either infernally hot, or bitterly cold.

You name it, I probably have done it.  If I was asked if I could do a job I’d never done before, I would read about it before going to do the job.  From doing drywall to laying foundations for new homes, to being so tired at the end of the day I literally fell asleep on my feet one time, leaned up against a pickup truck.

Even in my professional career I have pushed myself, and done things many would not normally consider.  I studied and prepared for months on end to obtain two rather prestigious certifications.  Obtaining those certifications certainly enabled better opportunities for me.  At one point I was even considering working out of Hong Kong, which would have required me to be away from my family six months out of the year.  The company I worked for at the time sent me there, as a sort of trial run.  I wanted to get down on my hands and knees when I returned to American soil, and kiss the ground upon which I was standing.  When I walked into my parent’s house (where my family was visiting) after being gone for almost two weeks, the first thing that occurred after sitting down is that my daughter Gracie walked over to me, sat in my lap, and then put her arms around me.  Needless to say, I didn’t take the gig with Hong Kong.

Maybe some of you are wondering what does any of the above have to do with Gracie.  I think it’s fairly obvious, don’t you?  And, of course, all that I’ve gone through is only part of our story.  Someone else had to be there to take care of our girls, and that person was Kristine.  The things she has gone through to support our family, well, let’s leave that for another post.  Anyway, just some of the things that went through my mind this morning while greeting the dawn of another new year…

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Update on Gracie-Girl, and miscellaneous things…

90 daysWell, it’s been 90+ days since Gracie’s stem cell therapy. Nothing significant to report in behavioral changes… I think.  She’s been really happy, is in very good health, is doing much better in school this year, and has been very affectionate lately.  Last night I thought I was hearing voices, and it turns out Gracie was vocalizing.

Is it because of the stem cell therapy?  Or is it because of the cumulative effect of all the other interventions?   Who knows?

Amazing how word of Gracie’s stem cell therapy gets around.  Not something I really shared with my coworkers, yet one of them (with whom I rarely speak) asked me how Gracie responded to the stem cell therapy.  I was surprised she knew anything about it.

Foogoo sippy cups.  They suck, I’m sorry to say.  I couldn’t understand why Gracie didn’t like it, that is, until I tried to drink from it.  Taking a sip from it is like sucking a golf ball thru a garden hose.  Still thinking of tethering her sippy cups to the dining table, though.

Door slamming episodes have ceased, thankfully.  Another coworker of mine suggested putting strips of Poron along the insides of the door casing, the part that stops your door.  I kept placing strips and testing the door by slamming it shut myself, until I was satisfied Gracie will no longer be able to scare the bejeezus out of any visitors.  If slammed, the sound amounts to a moderate, dull thud.  Unfortunately, in my testing zeal, one of Gracie’s Pooh letters (that spell her name) above her bedroom door fell from its place and broke.  The broken pieces sit in her dresser, waiting for me to glue them back together.

Dr. Brian Udell agreed to reduce the number of medicines and supplements Gracie is taking, from 12 different medicines/supplements down to 6 now.  I still want to get Gracie off the Buspirone HCL and Risperidone, but Kristine isn’t too keen on that idea.  One thing at a time, I guess.

Kangen water, another thing we’re trying, in an attempt to improve Gracie’s overall well-being (and ours too!).  I got in touch with a former distributor of Kangen water machines, a very nice lady named Carol.  She generously provided the water at no cost to us for two months, so we could make an informed decision to purchase one of our own.  Speaking for myself, I have never enjoyed drinking water so much.  Thanks so much, Carol!  Now I just have to make the time to contact my seller and buy one.

Finally, the chromosomal microarray analysis, or the CMA, testing for disorders of childhood development.  Dr. Udell put is in touch with Lineagen, a company that performs CMA testing.  Lineagen handles everything, from performing the genetic analysis, ensuring coverage by your insurance company, providing the specimen collection and transportation kits, etc.  The costs are around $5,000, and Lineagen confirmed our insurance with cover these costs.  We received our kits this past week.  Specimen collection is slated for today.  The hope is that if Gracie has any sort of chromosomal defects, Gracie’s doctors can tailor her treatment to address specific needs.

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Fundraiser over!!!

Pumpkin-Carving-Ideas-4

FUNDRAISER OVER!!!                      AND HALLOWEEN… 😦

I apparently have a thing for numbers.  See below for fun facts.  I’ll add to list as I think of more… Gracie’s fundraiser officially ended at midnight last night.  Thanks again, everyone!

  • $5,150, amount collected by Gracie’s fundraiser
  • $10, minimum individual contribution
  • $500, maximum individual contribution
  • $71.53, average contribution
  • 171, empty B-12 syringes
  • 1, container holding all the syringes
  • 0, guesses from donors regarding number of syringes in container
  • 72, donors
  • 12, family member donors
  • 59, friend donors, or from friends of friends
  • 1, complete and utter stranger donor
  • 1, person unfriended from Facebook over fundraiser (Maleficent profile pic should have been my first clue)
  • 3, months since Gracie received stem cell therapy
  • 12, supplements/medicines Gracie was on
  • 6, supplements/medicines Gracie is on now
  • 0, times I managed to stick myself with a syringe

 

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Pizza and a Movie

pizzaFriday night, Pizza Night.  Gracie, who sometimes has dinner before the rest of us, is pacing between the family room, dining area, and the girl’s bedrooms.  She stops at the end of our dining table and reaches into her pants.  “No, Gracie!” I yell.  Too late.  Out comes her hand… ugh!  Gabby already had enough sense to look away before her sister pulls her hand up.  I’m immediately disgusted, and a groan issues from deep within me.  Kristine grabs Gracie and corrals her into the bathroom so she can be bathed, cleaned up.

I put my head down and begin to laugh, almost hysterically.  “What is so funny?!” Gabby asks.  When I recover, I raise my head and say to her “I’m laughing at myself.”  I think about the ridiculous look of horror I must have had on my face, holding up a slice of pizza.  I finish my dinner.

Later, Kristine and I settle down to watch a movie.  We’d enjoy it more if it weren’t for Gracie’s constant pacing back and forth in front of the TV.  Sometimes she’ll pause in front of the TV, blocking our view.  Other times she’ll sit on the entertainment center, her head right in front of the screen, blocking out almost half of our view.  “Gracie, move!” I yell.  Turning to look at Kristine, I say to her, “Just once I’d like to watch something in peace.  Once.”  I’ve had it, Gracie is going to her room to stay so we can enjoy the rest of our flippin’ movie.

Gabby comes into the family room.  I sigh and pause the movie.  “Dad, I’m going to bed,” she says.  I follow her to her room to tuck her in, and upon passing her sister’s room Gabby turns to me.  “Don’t you smell that?”  Christ, I was holding my breath going by Gracie’s room, cause honestly, I didn’t want to know.  I take a cautionary sniff.  Don’t want to inhale too deeply.  “Kristine,” I say.  “Gracie has shit the bed.”

I clean Gracie up before I even put her into the bathtub.  Kristine is cursing like a sailor.  I tell her to calm down, while suppressing my urge to gag.  “Yeah, let’s go get her some more stem cell therapy!” she says to me between clenched teeth.  That hurt, but I say nothing as I take a brush to Gracie’s fingernails.

The bedclothes have been changed, the laundry started, Gracie bathed, and her PJ’s on.  Kristine and I settle back down in silence to finish our movie.  Upon its finish, Kristine says to me, “That was a really good movie.”  To which I respond, “I’m glad you liked it.”

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