Month: February 2018

 

 

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I have been familiar with pain for a very long time.  In my 20s it was IBS and Chronic Sinus Infections.  Sinus Surgery helped but was it’s own pain experience.  I gave birth to Hayley.  In my 30s, it was a 2nd sinus surgery, wrist surgery, gall bladder, uterine ablation, and I gave birth to Henry.  Add a dislocated tail bone thanks to Henry.  I was diagnosed with Fibromyalgia at 38 and shortly after suffered Cardiac Arrest winning a pacemaker, that involved pain for sure. New Year’s in Vegas I broke my ankle.  All of this before I was 40 and I am sure I am missing something.  I looked up words to describe pain.  This is what I found:

• aching
• tender
• sharp
• shooting
• hot
• burning
• nagging
• intense
• stabbing
• tingling
• dull
• throbbing

These words all describe the pain of Fibromyalgia.  What they don’t include is the emotional pain.  Guilt, Sadness, exhaustion, frustration, anger or disgust.

All of these descriptive words also describe my grief.  The raw pain of losing half my heart in one horrible night.  It aches all of the time.  A deep ache in your chest, it feels as if it vibrates throughout your insides.  Your skin is tender.  You are raw.  You don’t want anyone to bump into you.  I sometimes cannot find clothes that are comfortable touching my skin.  The sharp pain takes you by surprise, it takes your breath away.  It happens when you walk into the dentist office and see a young girl with her back to you.  She has long brown highlighted hair.  She is wearing a black puffy north face vest, with leggings and black Nikes.  This was Hayley’s uniform.  The sharp pain knocks you down and you have to hide.  Shooting pain is when you are doing laundry and you come across a pair of panties that were hers.  You sit and grip it and put it to your face.  I dropped to my knees feeling the shooting pain.  Not knowing if it is from the grief or worry about your psyche that you are alone and smelling her clean underwear.  Hot and Burning are the feelings of anger at the injustice of it all.  Or when you receive a doctor bill 7 months past that lists the details of what services they provided.  It included “placement of breathing tube”.  I felt hot as I called and begged them to stop sending this mail addressed to Hayley.  Nagging is easy to articulate.  It is the nagging thoughts that won’t stop.  What if I had taken her to a different hospital.  Why didn’t I yell and scream until the doctors heard my concerns.  It is a line of thinking that is truly nagging and so hard to stop once that train has left the station.  Intense describes the pain I feel every single day.  It is that moment when I wake up.  For a few seconds I am only focused on which dog woke me up and then I remember.  This pain is intense.  Or when I walk into her room and see her shoes lined up, her make up cart, her laundry basket still holding the clothes she wore the week before her death.  Such intense pain.  Stabbing is all of the above.  Tingling is the sense that you are forgetting something.  A memory that you try to pluck and you can’t.  Grief robs you of your mental strength.  Studies actual show lost brain function in people experiencing intense grief.  So if you are feeling all of the above and you can’t remember what you have to do tomorrow or what you did yesterday; it’s okay, you can blame it on brain damage.  Finally, dull and throbbing, this is your eyes, sinuses, throat after crying every hour all day.

It is the middle of the night and my pain is high.  My joints ache and my chest is tight.  I am fighting tears begging the xanax to kick in.  My muscles throb.  How do I survive this pain?  How do I walk through this hell?  All I want to do is rest. I want one day, even just one hour where my body doesn’t hurt and my mind rests.  I cannot even imagine how that would feel.

So when you ask me how I am and I shrug and say “ok”, or it’s a hard day, maybe knowing these words that describe pain will help you understand your own pain, my pain and the pain of your loved ones.  Everyone carries some pain.  Don’t forget that.  Don’t forget the promises you made to me and others.  Like when you said “I won’t stop asking”, “I will be here”.  If you said it and you have not been able to follow through, it’s okay, you all have your lives to live.  Because mine has stopped, yours shouldn’t.  BUT what I ask is that the next time you are faced with someone in pain for whatever reason, do NOT make promises of any kind.  You don’t need to add to their pain when life prevents you from following through.  Just address the present, don’t promise for the future.  I would prefer you didn’t.  But you can be…

Be understanding.  Be kind.  Be patient.  Be empathetic.        Be helpful.   Be strong.  Be real.  Be authentic.  #belikehayley

 

I have some catching up to do.  We shall see if we get one long post or multiple ones.  Back in the fall I met with a local tv anchor.  She and I have been friends since her days on the AHA board.  I have done Go Red for Women stories with her.  One year I even let her film me in a Gym.  That was when I was weighed on tv and the story’s angle was a women recovering from a heart event and getting in shape.  The only problem was that my story was followed by one about a contest to guess the weight of the hippo at the Woodland Park Zoo which both kids thought was hysterical.  Despite the hippo story this woman is the only one I would trust with Hayley’s story.  We met and I told her what had happened and all of the positive events that happened since my loss.  I explained what I wanted to accomplish with the #belikehayley movement.  First I want people particularly teenagers to understand what the “be” meant to her and I.  Make a decision to “Be” something each day, week, month or year.  When we ask our children what they want to be when they grow up it is assumed that they will tell us what career they will have.  Hayley wanted to be an FBI agent or a Police Officer.  This was her answer since around 6th grade.  Prior to that it was a pilot, but the she realized math was not for her.  But as she entered high school and again in college we talked about the “be” all the time.  I want the first thing my kids to think of when I ask them what do you want to be when you grow up, NOT to be a career.  I want them to say things like “be happy; be loved; be kind; be outgoing; be brave”.  Pick a career that makes you happy, kind and brave.  You will have made the right choice.

The second goal of the campaign is to promote organ donor awareness.  We are one of the top states with an 80% yes rate with the dmv.  I recently did some training with our state organization.  I expressed my desire to encourage people to say yes to organ donation.  Her reaction was “we are already the best in the nation at that”.  My reaction, but we are not 100% so why stop trying.  Hayley’s organ donations, the lives she saved and the families that did not have to go through what we did, that is what has kept me standing.

My friend and her kind cameraman stayed for 4 and a half hours filming.  We filmed at my house, we walked at Beaver Lake and hid some painted rocks.  I don’t know what will make the final cut or how long the piece will be.  But that day I honored my daughter.  I had the best listener, a woman that both Hayley and I respected.  Hayley thought she was always the prettiest and smartest person in the room.  She would be thrilled that her story was being told by Marni.

I felt drained that day.  I poured all I had into it.  In spite of my planning there was still things I wish I had said.  That evening one of my new friends from the past 6 months called to say that on Wednesday, Valentine’s day we had plans.  Um, no, we have to pack and leave Thursday morning for our trip to San Francisco.  Being my friend from New Jersey, no was not an answer.  Be ready by 6, you will be home about 9 and dress warm.  OMFG, what is she up to.  First, not a huge fan of surprises.  Second, Scott and Henry even said WTF.  But we all knew we would be ready at 6 in spite of our reservations.  Scott doesn’t celebrate Valentine’s Day so I figured maybe I would get some love out of this.  Boy did I.

That day I was busy.  I did some work.  I bought Justin Timberlake tickets, cause hello “Suit and Tie”.  I had an eye doctor appointment.  Then the dog kept throwing up so I had to take the puppy to the vet at 4:45.  As I was getting ready to  leave it came to my attention that I had spent the day with my pants inside out.  Pretty typical shit for me.  Got the dog back home with ear drops, meds and a $253 vet bill.  All in time to have 15 minutes to dress, grab a hat and gloves and be ready for our adventure.

We crammed in to their Honda Pilot, my family and theirs.  7 of us total.  I really had no clue.  We started with dinner at Burgermaster.  BTW, Valentines Day was one of the busiest nights I have seen there, we all mad cheap date jokes, that and weed jokes since the car next to us was Hot boxing.  After we headed into Seattle to Seattle Center.  OOOh, maybe we are going up the space needle.  Did I mention that it was colder than a witch’s tit?  That would be if a witch’s tit was 36 degrees.  At this point we were at a half wall near the fountain and on the side of the space needle were scrolling valentine’s messages.  I knew that they benefit the local AHA as I had worked there when the idea started.  Stacy gave us a card and explained that my friend, Shay had instigated this amazing idea and over a dozen women participated.  In addition to the messages we were waiting to see, there were gift cards to do family activities.  We were overwhelmed.  She said the messages would be on between 8 and 8:15.  Hear negative buzzer, nope didn’t happen.  During that time over and over we read that Jason loved Daina and that Bill and Karen Witter had something special going on with the space needle back in 1983.  Now the Cinderella family, Stacy, Dave, Brittany and Cousin, Tony; could win the funniest family from the East coast.  We made up creative stories about Bill and Karen.  Mostly to keep ourselves warm.  We figured the messages were behind.  Another 15 minutes and the “L’train” got away with the no obscenities by using a very nasty urban dictionary term that clearly AHA or Space Needle guy didn’t google.  But we did!  That gave us another 15 minutes of laughter.  Henry was starting to do the 15 year old freezing boy thing.  I said, this is too important to too many people our asses will be out here until we see this or we get hypothermia which ever comes first.  Poor Stacy.  My New Jersey friend was ready to hurt someone.  Not to mention the ladies that all pitched in had a group message going asking her why it had not happened, keep in mind they are watching a live feed of it from the comfort of their warm homes with glasses of wine.  Lots of swearing on our end.  As 9:00 approached we were starting to become weary and that is when it happened.  I thought it would be anticlimactic after freezing our asses off for an hour.  It was not.  It was the most amazing thing I have ever seen.  It scrolled the following message on the side of the most recognizable landmark in Seattle.  “Be Kind #belikehayley.” “Be Real #belikehayley” “Be funny #belikehayley” “Remembering Hayley McCutcheon”.  I weeped.  I cried because I knew so many amazing woman that were honoring my daughter to try to help me realize she was not forgotten.  I cried because my daughter’s name was in lights.  I cried because it would never be a message from a boyfriend like Jason showing his love for her.  Scott and I held each other and cried.  The tears practically froze on our cheeks.  After watching it scroll three times I hope the Cinderella family knew how thankful we were that they stood outside with us.  But then we said “let’s get the fuck out of the cold”.  Just amazing.

I still had laundry to do and packing but it was totally worth the lack of sleep.  The next day the three of us and one of Henry’s friends headed to San Francisco for the holiday break.  Thank you to all of the women that made what had been a tough day into something special.  I was missing my valentine so badly, this put it in lights.  Thank you.

 

Some weeks are harder, some days are harder, some hours are harder.  Then some are just brutal.  This week seem to be brutal.  I cried more, I was more tired, and in more pain.  I can’t figure out if there is a reason or a trend.  Some times it is an obvious trigger.  That is what happen today.  My mom, Scott and I were rearranging furniture.  In our front room we had two red leather chairs.  They are not the most comfortable, but they do recline for your feet.  I put a tv in there a couple of years back and then we actually used that room.  It was the same concept of not letting Henry have his computer in his room.  We would never see him.  So he has a man cave downstairs to do his gaming.  This way we see him when he comes out for fluids and nourishment.  Hayley was the same way about the TV and her shows as Henry is about gaming on his PC.  Hayley actually had a bulletin board in her bedroom and a list of shows she wanted to make sure she didn’t miss.  Thank goodness for a DVR.

She liked her alone time.  Her room was her sanctuary.  It was her favorite place to be.  Her space at home.  So I upgraded our cable system to get DVRs in all the rooms.  This way she could watch her shows downstairs in the front room.  We used to call it the Red Room but then 50 shades of Grey ruined that.  This way we saw her, we were all on one floor and “together”.  We have an open floor pan that has a stair case up the middle.  This was my solution to the family challenges of the 21st century.

It was the red chairs that Hayley and I sat in and talked about organ donation a month before she left us.  We had talks about life in that room.  I even counseled some of her friends in that room.  She got in trouble in that room.  The one time she ever really got in serious trouble I added a dining chair for Scott and the space became an interrogation room.  We took family photos in the room.  Snapped photos of reluctant kids dressed up for special events.  Hayley and I would watch tv together there.  Well she would watch, most of the time I had my laptop and was working.  Her shows generally involved little people, Kardashians, emergency rooms, Grey’s Anatomy, Crime, Pretty liars, and a Full House.  This was how she relaxed.  I cannot tell you how many shows of Full House and midgets I watched.  Oops!  Do not call them midgets.  She would flip out.  That is a derogatory term, they are little people.  It was so much fun to watch her get all in a huff about it that Scott and I slipped up often.  This would most often take place in the red chairs.

I waited for her to come home in one of those chairs.  She would come in from work in her uniform of my black pants, a white button down and her green Sammamish Cafe Apron.  She generally flopped into her chair and said “I fucking hate people”.  This always made me laugh.  She said it often.  So often that I ordered her one of those mermaid pillows that revealed that same phrase.  I showed her and she was so excited and had the spot in there room picked out for it’s place of honor.  It got delayed and it arrived after she was gone.  But I would say to her,  “Hayley I hate people too but that needs to be our little secret.  I am so proud of you for how well you do your job.” I would sit in the cafe working or reading and watch her work”  It gave me joy.  Customers smiled when she smiled at them.  She kept straws, napkins and jam in her apron pockets.  I would find straws and napkins on our counter that she forgot to leave at work.  Once there was a steak knife!  Then one day there was jam.  Score, hand me that strawberry, my favorite.  From that day forward I would have those little packs of Strawberry jam in the fridge for my toast.  If I complained she said I had to take what was left in her pocket.  But the Strawberry are my favorite.  Hayley kept me in jam.

Last night we finally rearranged that room.  We moved the crate and barrel couches that she and I had hauled home in a UHaul.  Both kids hate these couches because they originally replaced their beloved 15 year old worn out sectional.  They also hate the color.  It is interesting.  Evidently it is called Nantucket Red.  Hayley called it Pepto Bismol after you puked it back up.  The plan was to purchase new slipcovers in a more neutral colors as soon as I had a job.  They still have the Pepto covers.  The red chairs have now been displaced.  I am not sure what to do with them.  So we moved them to another room for now.  That is when it happened.

I try so hard to be strong.  It is a herculean effort.  I am trying extra hard with my mom visiting.  Her grief is also raw and I don’t want her to worry about me.  What can she do from Florida?  When Scott moved the chair, out fell a cafe packet of jam.  He handed it to me.  I lost it.  Sitting on the Pepto couch.  I cried.  My mom held my hand.  I held the jam like it was something special.  After a week of triggers and choking back tears it was a packet of jam that finally did me in.  I handed it to my mom and asked “want some Jam”.  It was not my favorite, it was Raspberry.

Back to my vacation.  As you may recall I left off after my birthday eve traveling to the crappy hotel with the horrible sheets only to end up at the right hotel for us.  Hayley and I had planned to go to Disney for my Birthday.  Just the two of us, I had even booked the room.  

Once we settled into our new room we walked towards the happiest place on earth.  Who coined that phrase?  It seems very presumptuous and a little over confident.  I have been several times and witnessed so many parents that are clearly not having the happiest time of their life.  Their child is melting down because they have to wait 45 minutes for Dumbo.  I saw parents that just want to go on the Pirates of the Caribbean to get cooled off and rest for a short time but junior is scared of pirates.  I have seen adults in long lines glaring at the kid in the wheelchair that gets to go to the front of the line.  Really?  Do you want to trade places?  So not very happy.  We have been lucky.  From Hayley’s first visit, Disneyworld, age 4, she had great reverence for the parks.  It was her Happy Place.  Even when dragging her 2 and a half year old brother around didn’t phase her.  Rain didn’t phase her.  She could spend all day there and never complain, never meltdown.  She was just so thankful to be there.  One year we surprised the kids for their birthdays.  Told them at the airport we were going.  Their birthdays are just 9 days apart so it was easy to do big things and have them share!

I was really worried about how I would feel about being there without Hayley.  I melted down before we left the hotel.  One of the things I realized is that I miss human touch.  Scott is not a touchy feely guy and his grief is just as deep but surfaces in different ways.  Henry, well he is a 15 year old boy, enough said.  So when I cry every day, it is just me and the dogs.  This time Sara sat next to me and rubbed my back.  It felt so foreign and I cried harder that I don’t have that every day.  I relaxed into it and the tears felt like a release instead of pain.  

We started at Downtown Disney because I had to have Beignets.  Donut like pastry fried and shaken in a bag with powdered sugar!  Heaven.  It was also a way to ease me into the parks.  We went to the Disney store.   Hayley and I referred to it as the “Big fucking Disney store”.  We spent more time than necessary picking out our ears.  I always have wanted them but always spent money on the kids not myself and if I did I got a practical baseball hat to shade my face.  Not this time, Mickey.  I am going to rock sequin ears.  As we walked towards the parks rocking our ears, Sara reached out and held my hand.  Her energy flowed into me and made me tear up but also made me realize, with that simple gesture, that I was not alone.  The person that was there with me was exactly who I needed.  We opted to start at California Adventure, less nostalgic.  Plus Sara had not seen Carsland and I was so excited to get her on my favorite ride ever.  We were wearing matching Red minnie tees with our Nike embroidered shirts over the top and our ears.  Don’t forget the Micky earrings she gave me for my birthday that day.  We were both absolutely ridiculous and incredibly adorable.  Two grown woman celebrating their birthdays at the happiest place on earth.

But you see it is not the happiest for me.  The happiest I have ever been is when Hayley was on one side of me and Henry on the other, my arms around them.  Now I am missing one side.  There is truly no happy place for me anymore.  By going to Disney and the Ocean, I was searching for that place.  The place where I would feel a little happy, a little peace.  But I was wrong to have that expectation.

As we entered Disneyland holding hands I didn’t get that normal rush of adrenaline.  It was like I was there but I was invisible.  It was just the two of us.  I felt like an observer but not part of the crowd.  It is so hard to explain.  I was grateful to be there with my longest friend, but I was disconnected.  I know the park inside and out.  I am a planner, I like to see and do everything.  This time I was fine to just wander without purpose.  Many parts of both parks were under refurbishing.  This also made it seem abnormal.  I expected to see Hayley around every corner or next to every character.  Is this the chair she sat in to eat her ice cream?  Which color car did she drive on the Autotopia? The voice in my head was full of questions.  Do you remember that time Hayley and I tricked a terrified Henry onto Splash Mountain?  What about the time Hayley and her Dad road the roller coaster over and over until the park closed?  Both were queasy still the next day.  What about those awesome photos of Hayley with Donald Duck with him acting offended because she was wearing a Micky mouse shirt?  The Birthday and Graduation trip for Hayley and Kayleigh that almost didn’t happen.  I am so thankful we found a way to make that happen for her.  We will cherish that trip always.

I made it 17,000 steps that day.  Prior to that day, my 47th birthday, I had not done more than 3,000 on most days.  I was hurting due to my bad ankle, fibromyalgia, weight and just plain being out of shape.  But I felt I had something to prove.  I had to do this for Hayley.  She couldn’t come to Disneyland but I could do it for her.  We spent Wednesday, Thursday and Friday in the parks.  We took it slow.  We didn’t do everything but we had fun.  I spent a lot of time people watching.  I would see a mother disgusted with her child.  I wanted to walk up to her and tell her to enjoy this time, it won’t come again.  Cherish it no matter what.  Let your plans go, let the schedule go, just BE.  I saw teenage girls wearing their ears and Disney wear.  ( like us old folks)

I noticed that the parks seemed not as shiny or clean.  Colors seemed dull through my grief stricken eyes.  My eyes found the pieces of trash or dirt.  The music and sounds were distant and muffled.  I wonder if this was my brain’s way of protecting me. Disneyland seemed worn out, just like me.  It was not as vibrant and beautiful as before.  I wonder if that is how I am seeing everything.  Do I see everything through the lens of grief?  Absolutely.  It took Disneyland to make me notice.

Our second night we were so lucky that a friend of Hayley met us.  It was so wonderful to see her, she is a talented young woman and one of Hayley’s favorite people.  It felt so good to hug her, like I was hugging a bit of Hayley.  I was obsessed with these gorgeous Swarvoski crystal tiaras.  I have no idea why, I am really not a princess.  I had to have one.  They were ridiculously expensive, but I had to have it.  I knew it would be the perfect accessory to wear when I was writing.  We were lucky that our friend gets a Disney discount and I felt less guilt about this really impractical gift.  Sara bought it for my birthday.  It is lovely.  I guess I am a princess.  Maybe not a Disney Princess but a princess just the same.  I know you are all jealous of my Tiara.  You may see me at the grocery store wearing it.

As we ended our Disney time and headed to Huntington Beach I realized that I had accomplished so much.  I had been physically active.  I proved I had the physical strength to walk for Hayley.  I had the emotional maturity to let Sara comfort me each day.  I had the awareness to realize a imperfect vacation was still a vacation.  (did I mention the sun?)  

 

I need to learn to Be Kind to myself.  I need to find my “NEW happiest place on earth”.

Disclaimer:  I enjoyed my vacation, I am thankful for my vacation and spending that much time with my longest friend was exactly what I needed.  Therefore if I say anything negative please refer to the disclaimer.

Hayley and I had plans.  Big Plans, small plans, all kinds of plans.  We planned to buy or rent a little motor home or trailer and start seeing the National Parks.  Our goal was to see them all before she was 40.  Our time.  We planned to start this summer.  We planned for me to retire when she had a baby and provide child care.  We planned to go to Disneyland for my 47th birthday, Hawaii for my 50th.  In October I mentioned to my friend, Sara, about the Disneyland trip.  We have been friends since 1987.  She was present at Hayley’s birth and at Hayley’s death.  We went to the same college, pledged the same sorority.  You can’t ask for more in a friend.  Sara was the maid of honor at our wedding.  There was a space in the middle where we had some time apart, but we are stronger for it.  She loved Hayley.

My birthday is January 24th, hers January 28th and Scott, February 1st.  For many years as we became legal adults the three of us celebrated our birthdays together, usually on Sara’s, as it fell in the middle.  I asked her, “hey want to spend our Birthdays in Disneyland?”  The trip developed thanks to a generous hotel discount provided by another old friend to include time at the beach.  We left Tuesday night late and came back Monday evening.  We had a little bit of an adventure on my birthday eve Tuesday.  We chose to go for location with our hotel and not fancy.  Plus it was smack between Denny’s and IHOP.  What more could you ask for?  It was right at the gate and since we were concerned about how much walking my body would allow, it seemed perfect.  We went to Denny’s for a late night dinner that turned into my midnight birthday meal.  We crashed at the hotel excited and worried about Disneyland in the morning.  As soon as I got in the bed I was already bitching in my head about the rough sheets.  Then when I noticed that Sara can still fall asleep almost as soon as her head hit her gross pillow. As a lifelong insomniac, that kind of pissed me off too.

About 15 minutes into my attempt to sleep I started to itch on the side I was laying on.  WTF.  I went into the bathroom and my arms looked like they had been sunburned.  My feet, ankles and arms, anything exposed and touching the sheets were bright red, itchy and uncomfortable.  I fought for a couple of hours of sleep.  During the night I found a Springhill Marriott that had availability and prepared myself to let Sara know.  When she woke up I told her we had a problem.  During the night I had messaged my mother.  Her advice?  Pull the sheets back and look for bed bug poop!  Yeah, that did NOT help.  Hell no, I didn’t check.  Sara being the easy going one said no problem.  We went to the front office, got out of our reservation and moved to the Springhill where there was a room already available for us at 10 am.  The front desk gal, Myra and I were chatting. It’s kind of what I do.  Somehow due to the #belikehayley bracelet we shared losess and it came out that she had lost her baby son recently, he had been born at 5 months and only lived 2 days.  She said she knows how she feels after knowing him for 2 days she could not imagine losing 19 years of memories and surviving.  I gave her a Hayley bracelet.

The room looked exactly like the one in Bellingham.  Identical.  I thought that would be hard.  So many nights spent in Bellingham with Hayley at that hotel over the past few years.  But it actually surprised me.  It felt comforting, the familiar.  Plus the sheets were super nice and very clean!  No rash!  It was meant to be.  My friend, Stacy, was coming to Anaheim for her son’s Hockey tournament.  She had said she was staying at the Marriott but I didn’t know if our schedules were going to mesh.  Well get this.  She walks into her hotel and the gal at the counter notices her blue be like Hayley bracelet while she is checking in and demands to know where she got it.  Stacy told her about her friend and Hayley.  That is when Myra pulled her sleeve up and showed her the blue bracelet that adorned her wrist!  What?  Myra told her we were there.  Stacy messaged me and said we were in the same hotel.  For the entire day Sara and I tried to figure out how she would know this?  I had not told anyone where we were.  It was perplexing but I was happy I would see her on my birthday.  Well that wasn’t all the information Stacy got out of Myra.  Stacy is from New Jersey, enough said.  When we walked to our room the door was decorated with hanging streamers in the Troll movie theme with a birthday card on the door!  Sara and I felt like we were back on Dance Team and at State where we decorated our doors.  We left it up the rest of the time we were there.

Even though the ride was closed for refurbishment, it truly was a Small World!