Three years ago today

 

Three years ago today I drove my dad to the Wake Forest Baptist Medical Center to be admitted for some tests. He had been having strange symptoms for almost two years and the MRI they gave him in the ER a few weeks prior had shown something funny.

Three years ago today I held my dad’s hand while they stuck a needle into his spine. They gave him a local anesthetic so I don’t think he felt much. A resident talked a newer doctor through the lumbar puncture procedure and the directions combined with the pressure of the needle on my dad’s back made me hot and nauseous. I thought about leaving the room so I wouldn’t faint, but I wanted to be strong for my dad. So I didn’t.

Three years ago today I drove the 12 hours back to my home in Michigan.

Two years, 11 months, and 28 days ago my mom called to tell me that they had my moved dad to the ICU. They didn’t know what was wrong except that they knew he couldn’t breathe right on his own. They put a tube down his throat.

Two years, 11 months, and 28 days ago the test results from the lumbar puncture and blood work weren’t back yet and some wouldn’t be back for weeks. They didn’t know what was wrong. They were just trying to keep him breathing.

Two years, 11 months, and 27 days ago was my mom’s birthday. I had flowers delivered to  her in the ICU waiting room.

Two years, 11 months, and 26 days ago I flew from Michigan to North Carolina. When I picked up the rental car at the Greensboro airport I didn’t know that I would be keeping that car for the next month. When I held my dad’s hand in his cubicle nestled between ICU curtains, I didn’t know that I would be sitting next to his hospital bed for the next two months. When I opened my suitcase that night in my parents house, I didn’t know I would be living out of it for the next three months.

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Holding dad’s hand while he was in and out of consciousness. March 21, 2014

Two years, 11 months, and 22 days ago they took dad out of the ICU. I don’t know if they thought he was better enough or if they just needed the bed but that night was one of the worst of my life.  Every night he was in the hospital and not in the ICU was terrifying. In the ICU there was always someone nearby and he had monitors on him for his breathing and heart rate. In the regular room, he was all alone. And we were right to be scared. I spent many sleepless nights in the reclining chair next to dad’s bed. One night I could hear him breathing too fast and being restless in the bed. Hyperventilating was what usually sent him back to the ICU so I went to get the nurse. In the minute that I was in the hall, he had somehow yanked the feeding tube out of his nose. It lay there dripping stomach secretions and feeding tube formula on the floor.

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Sunrise from dad’s hospital room. March 31, 2014

Two years, 11 months, and 25 days ago they put him right back in the ICU. He ended up going back in there three more times. He was intubated two more times. They gave him CPR once.

Two years, 11 months, and 21 days ago he forced his breathing tube out with his tongue. He was often restrained with soft wrist restraints during this time and he hated being intubated so much that he had used his tongue to wiggle it out.

Two years, 11 months, and 20 days ago dad went for his first surgery. It was a brain biopsy. Mom and I sat in the waiting room for hours terrified but hopeful. The neurologists told us that the pathologists could look at the samples right there as they took them out of dad’s brain. Then they might find a cause and, with a cause, could come a solution. They looked at them. The samples were inconclusive. Further tests were inconclusive. There were never any conclusive results from any test to diagnose dad’s illness.

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Our reflection in the waiting room window during dad’s brain biopsy. April 8, 2014

Two years, 11 months, and 13 days ago a neurological attending and all her students took us into a room with comfy chairs (by hospital standards) and lots of boxes of Kleenex. She said it was time we considered palliative care. I didn’t even know what that meant. She meant that she thought dad was dying and we should talk to the “they’re dying let’s keep them comfy while they go” people (aka palliative care). We did. Sitting in the waiting room. In a hallway. The guy said that we could choose to stop feeding dad if we wanted. We said no. We believe in giving people food. Even if they are dying.

Two years, 11 months, and 9 days ago They gave him a tracheostomy to make it easier to help him breathe and a feeding tube to get him nutrition. That surgery was the most stressful of all. It wasn’t the surgery. It was the period right before the surgery. Dad was hyperventilating again. His brain told him he needed more oxygen when he really didn’t and the lactic acid buildup in his cerebrospinal fluid made him out of his mind restless. The only thing I found that seemed to help calm him was praying the rosary out loud. I prayed countless rosaries in those two months. I prayed until I was beyond hoarse. There was nothing else I could do. I stood next to his bed for at least an hour in the surgical prep room. All the other patients moved on to surgery. We were alone in a room once filled with rows of hospital beds. Dad’s surgery room wasn’t ready. We had to wait. The nurses stood in a corner and waited too. Dad said his chest hurt so they hooked up an EKG. It was okay but now his hyperventilation had gotten so bad that he wasn’t well enough for surgery. Yet they couldn’t send us up to the ICU because there were no beds available. I stood there for an interminable time. Mom was at work and I felt so alone. I had to be there. I had to be the strong one for him and all I wanted to do was run out the door and all the way out to the parking deck railing, lean over the edge, and scream and scream and scream….

One of the nurses in the surgery waiting room had on a saint bracelet. (Rare here in the south). I complimented her on it. She told me about her son who is a priest nearby. They found dad an ICU bed. That caring nurse took us to the elevator. When we arrived at the elevators, she told me how refreshing (though rare) it was to see another Catholic here at the hospital. As I got on the elevator and the doors closed, she walked back towards the holding room and shouted out, “Hail Mary! Full of Grace!” and I replied, “The Lord is with thee!”

Mom got to the hospital. I took a walk around the hospital. I went to the bathroom. I cried. A few days later dad had a successful surgery.

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Looking out at the parking deck near the surgical waiting room at Wake Forest Baptist Medical Center.

Two years, 10 months, and 22 days ago I left my job as a youth minister in Michigan and officially moved to North Carolina to take care of my dad.

Two years, 10 months, and 5 days ago they “discharged” dad from the hospital. He was still undiagnosed. He is still undiagnosed. But they had run out of ideas. And the longer patients are in the hospital the worse it is for the hospital’s bottom line. (Aka short term patients earn them more money per night than long term patients like my dad). So they sent him to a nursing home. I spent every night that week in his nursing home room on a cot I brought from home. A few days in to his stay we noticed he was getting symptoms that should have been stymied by his medication. I asked about his medication. They couldn’t find it from their normal pharmacy so they hadn’t been giving it to him. They hadn’t told mom or me or him.  For other people the medication that dad is on is used to stop bedwetting. For my dad it prevents him from a life threatening level of dehydration due to diabetes insipidus. The nurse called 911.

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Dad in his room at Lexington Health Care Center. May 12, 2014

Two years, 9 months, and 26 days ago I drove behind the ambulance to the hospital. When I got there dad was already in the back and they had me wait in the waiting room for a few minutes. When I got back to him, he was alone, still on the backboard, and screaming in agony. At that time, he had a stage three bedsore on his backside. He was lying directly on an open wound on a hard piece of plastic. Alone. I held his hand and talked to him until they came to take the backboard out from underneath him.

Two years, 9 months, and 21 days ago he was discharged from the hospital again. We found a different nursing home for him. After a few nights I felt comfortable with him sleeping there alone. He had a roommate and a call bell. We kept our own charting of all his medication and input and output. When you are 57, I am certain the most depressing place to be stuck is in a nursing home, unable to get yourself out of bed, with a trach in your throat so you can hardly speak.

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Two years, 9 months, and 9 days ago dad was alive to celebrate his 58th birthday.

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Two years, 8 months, and 16 days ago was dad’s first time in a car post hospital. Mom and I drove him to Duke Hospital for a consult with the same neurosurgeon who operated on Ted Kennedy. He had no useful information for dad.

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Driving to Duke to see the neurosurgeon. July 1, 2014

Two years, 8 months, and 3 days ago they told us that dad had to leave the nursing home in three days because his insurance had run out. We had three days to get a bed and a feeding tube pump and a suction machine and a primary care doctor and nursing care and some sort of transportation home for dad. We were also in the process of moving to a new house. Three years and one week ago I had driven down to NC to help my parents move. Dad’s illness had put that on hold. But the old house wasn’t wheelchair accessible so we had to get into the new house somehow. In three days. And we did (in six days). The first piece of furniture in that house was my dad’s hospital bed.

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Arriving at the new house. July 20, 2014

Since dad has been home it has been…Grueling. Terrifying. Frustrating. Depressing. Hopeless.

Today I can’t even put it into words, these past three years. I feel like if I did you would think I need medical help. And I probably do. But I can’t afford it.

Today it is beyond hard to keep my sanity doing what I do day in and day out. I am my father’s full time caregiver and I have two part time jobs to pay the bills. My mom works full time and she takes care of dad on some nights and weekends while I work. We get no disability, social security, or any sort of government assistance. We get no home nursing care from insurance. They say that all dad needs is “custodial care” and”custodial care” is not covered by insurance.

Is it”custodial care” to fill his feeding tube with food? Is it”custodial care” to help him roll over in the middle of the night? Is it”custodial care” to change his diaper? Or brush his teeth? Or give him a bath? Or use the hoyer lift to pick him up out of bed and put him in the recliner?

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Dad in the Hoyer Lift. December 20. 2016

In the past we have gotten nurses and CNAs from a local agency to care for my dad for a few days. They charged us $700 a day. Dear insurance company, is it “custodial care” when a 30 year old daughter must put her life on hold to move home and care for her father?

When you do these things for your dad, who is not even 60 years old yet, your outlook on life changes. Many things change. Many change for the worst.

But some change for the better.

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I know how strong I am now. I know what I can handle and what I can handle is a shit ton. Sometimes literally.

I know I can be there in a crisis. I know I can make good decisions under pressure. I know I can handle gore and all sorts of bodily fluids. I know I can juggle. A lot. And get by on little sleep.

I know that God is real and he is holding me so tight right now as I write this and cry. I know I can go through hell and I will still believe in him and he will still believe in me.
I know that I am worth gold. That I am precious and beloved in his eyes. Even when I feel alone and unloved and unappreciated. He loved me first and he loves me best of all.

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Carved into the sidewalk outside Wake Forest Baptist Medical Center.

Most times, when I talk at length with someone about what I do for my dad and what he has been through, they say “Wow! I could never do that.” I don’t tell them this at the time, but I am pretty certain they are dead wrong about knowing what they could handle. I never intended to quit my job and spend three years devoting my life to caring for my dad. I never considered myself a daddy’s girl and I hadn’t even lived in the same state as my parents for a decade. Becoming dad’s caregiver happened so slowly that I didn’t even see it coming.

I like to compare it to a frog in a pot of water. Have you heard about this? When one cooks a frog, one plops it into a pot of cold water. The frog is content and so it stays there. The cook turns on the heat but the frog doesn’t notice the slow rise temperature until it is too late and he is cooked.

I am a cooked frog. I never saw it coming. One day I was driving dad to the hospital and then suddenly it is today, three years later and I am emptying his urinals, changing the dressing around his peg tube, and taking him in the wheelchair van to his diagnostic neurology appointment.

I didn’t see it coming, but here I am, just trying to keep up, and praying desperately for a better tomorrow. It’s three years later. It’s not what I expected. But my dad is alive. My mom is alive. And I am too. So….that has to count for something.

-Veronica

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Un comfortable

This is a public service announcement…and also a poem. 

He makes you uncomfortable
doesn’t he?
When he drools
and shakes
When he says something
with slurred speech
and he looks at you
expecting you to understand
So you nod and smile
That makes you uncomfortable
doesn’t it?

Well, when that happens, it makes him uncomfortable too
Oh I don’t mean the drooling and the shaking and the slurred speech
After 3 years, he is used to that
That’s his new normal.
What bothers him
is that it bothers you

He’s a smart man
He notices the difference
between a “nod and smile” of understanding
and
a “nod and smile” that says
“I have no effing clue what you said but I can’t be bothered to actually try to understand you.”
He notices the faces
of disgust you make when his drool drizzles
through his beard and pools in a wet stain on his shirt
He notices how people talk extra
slow and extra
loud and extra
peppy to him.
He notices how he eats
and how it draws attention;
he refuses to eat in public anymore.

He notices
and it makes him uncomfortable too
So, excuse me if I don’t give one flying fart how uncomfortable he makes you.
Being him makes him uncomfortable enough as it is.

Attention everybody
Start getting comfortable with being uncomfortable
Cuz my dad’s here
Get used to it.

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Just Thinking

Okay. 

So maybe I overthink things. 

Some things, right?

Not all things. 

So how do I know which ones 

have been overthought?

which ones have been underthought?

and which ones have been thought about juuuuust right?

It seems to me like the safe bet, then

is to think about everything

just 

a little

bit

more. 

Right?

Just in case. 

I am the Elephant in the Room

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You don’t know me.
You REALLY don’t know me.
Yes, you know my name,
and my job title,
and my favorite color.
But those things are as
much of who ME is
as an eyelash is the whole Elephant.

There is an Elephant that is ME.
And you have picked up her eyelash, examined it, and exclaimed,
“Oh look, an elephant!”
“Now I know what an elephant is!”
You DON’T know me
And yes, I could tell you all about me
about the wrinkles along the Elephant’s swayback
and about last year when her
herd was attacked by poachers,

but I don’t want to

Nor
do I have to

If I don’t want to let you in,
I simply won’t.
I have that prerogative.

So
Just because you know
my favorite color,
my job title,
and my name
doesn’t mean you know ME.

Don’t make that presumption.

What you know about me
is one sentence of one chapter on one page
of ME.

You don’t know me.

The Officer, The Gas Station, The World Cup, and Cindy* Laughing.

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At the nursing home where my dad stays, there is a man down the hall that I will call the Officer. Today, as I was walking by his room, the Officer was trying to recruit his roommate to enlist. “We need people like you to stand up and fight!” The Officer seemed to not notice that his roommate is over 400 lbs with a trach tube in his throat, and cannot, in fact, stand up.

It’s moments like these that keep me smiling. The Officer doesn’t know, but I have been doing good at finding joy in the little things. And I keep running into more little things to be joyful about.

The Officer is about 80 years old, white hair, always in bright blue polo shirts and trousers, and I see him almost every time I walk down the hall. He is a friendly man, but very purpose-driven. And his purpose is the war. He is firmly entrenched in a delusion that we are in a major worldwide conflict and that the nursing home is some sort of command center. When I pass him in the hall, he looks at me, so I say hello and smile. Usually, he will tell me something like: “They told me to wait here for my orders.” or “Have you seen the man in charge?”

It’s not my place to confront his delusion and doing so wouldn’t help him get better anyway so I play along: “That’s good, wait here for them” or “The man in charge is gone; it’s Saturday.” The staff here play along too. When he comes to the desk and asks if he can speak to the General, the nurse says: “Sorry, I can’t get him. He is busy on the phone with the President.”

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Every time I talk to the Officer, he makes my soul happy. And not because I am looking on with bemusement at his break with reality. Rather, his drive and sincerity, in this place of malaise and slow age make me wonder about his life. What was he a part of when he was in the military that sends him back there so firmly in his old age? What has he seen? What has he done? I respect him so much.

Feeling respect and giving respect can make the difference between an abysmal day and a day worth fighting through. The other night at the gas station I got that unexpected respect. I was going in to prepay for gas with the cashier and all I was trying to do was make it through until I could get home and rest. It had been a very. long. day. I didn’t expect anything but the most cursory courtesy from the cashier, but this is what I got:

Me: $30 on pump 3, regular.
Him: How are you?
Me: Better than yesterday.
Him: Well that’s a step in the right direction!
Me: I guess so.
(As I am walking out the door) Him: Here’s to tomorrow!
Me: Here’s to tomorrow!

He didn’t need to give a damn about me to make that sale, but yet he did. He looked me in the eyes and actually wanted to know how I was. I could tell. And that’s why I didn’t just say “Fine” He genuinely wanted to know how I was doing. It made my day for him to reach out in that little way. To just be sincere to another human.

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It’s amazing how far the little things go. Today we were at Duke Hospital with my dad. Dealing with the stress of getting him there safely and on time could have pushed us past breaking by the time we got to his appointment, but it didn’t because of the strangers who cared. The valet who helped put dad’s wheelchair together, the nursing staff who seemed thrilled to see each person they met, even the people who designed the waiting room. It was big and spacious and had a nutrition area with free snacks and ice. The staff there was truly phenomenal. We were in the outpatient cancer building and everyone, from the receptionist, to the nurse, to the tech doing vitals, to the guy at the info desk, to the random staff members we passed in the hall, Everyone was genuinely happy to see us and genuinely friendly to us.

They treated us like people, like people they would like to know.

And isn’t that what makes people want to be people? To keep going when you are in a room full of industrial fans and it’s raining poo? When people really and truly care about you. When they look you in the eye and acknowledge you. When they ask you a question and drawn into your answer with fascination.

Being known is what makes life worth living.

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Some people are good at knowing people and caring right off the bat, like today at Duke. Sometimes it’s harder. Sometimes it takes time. It has been harder here at the nursing home where my dad has been for over a month. A job working at a nursing home, where staff are underpaid and overworked does not attract world class employees. So, when they are stressed, they show it. And they are always stressed. Furthermore, when they don’t know you, they aren’t very good at sincerely caring about you. And it’s hard to get to know people in a nursing home, especially when you work here.

But now we have been here for more than a month so, they are starting to get to know us and get to know dad. Last night, we had a long long conversation with the nurse, a sincere conversation. And it was good.

And today we watched the US vs Belgium in the World Cup in dad’s room. The TVs here don’t get ESPN so Mom and Dad and I were huddled around my laptop watching it on Univision (the only place that streamed it for free!) When that same nurse came in to give dad his meds, she huddled around the laptop too! It turns out that she played goalkeeper back in the day. Then, the CNA came in, and, she was so excited to see the game that she wrapped her arm around me and squeezed in right next to me to watch too. We were no longer patient and nurse or servant and served. We were together, on the same team, rooting for victory.

And no, I am not talking about soccer anymore.

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Reaching out to another human. Being touched by another human. That is joy. That is what brings me joy. That is what makes life worth living.

Soul touching soul.

There is no one with more soul here at the nursing home than Cindy*. She could be 30; she could be 60; I can’t tell. I do know that whenever I have been near her she has been laughing. And no one has a laugh like Cindy. She laughs when she gets a question right in therapy. She laughs when she does well and is praised. She laughs if she does wrong. She laughs if you say hi to her in the hall. Cindy is made of laughter, never sarcastic or manic laughter. Cindy’s laughter is made of squeals of delight and giggles of glee, pitched high over mounds of love of life. She is just happy, happy all the time. Happy when, Tina* the therapist asks her her name and she says “Coconut” happy when she is working hard to stand up. Life is joy for Cindy and Cindy’s laugh is joy for everyone it touches.

In my dream world, I am some combination of Cindy, the Officer, and that gas station cashier. I reach out to strangers with smiles and sincerity. I am kind. I am happy. I am loving.

Instead, I am a ball of stress and worries. I walk with a stoic face. I avoid “useless” interactions. I tear people down based on what I see with my eyes. I don’t look with my heart. Mostly, I just look at my phone.

I don’t know any magic way to change, except the little way.

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I have found when I appreciate these little things, these little joys, these little interactions, I have more joy to give. And the circle is unbroken. And the joy expands. And the world becomes a little easier to live in.

 

For all of us.

 

 

 

*name changed

Monday

Baby joy

I have been meaning for a while to write about the meaning of life. That’s not ambitious at all you say… hah!  I agree; hence why I have not posted about said topic, even though it has been on my mind so much. 

The subject of my thoughts is not so much the meaning of life overall, but more about the meaning of MY life. What do I, Veronica, stand for? What do I think is important? What am I driven to do? What makes me passionate? 

In one word, I would say the meaning of my life is joy.

Give me a whole sentence and I would say, the meaning of my life is to share joy with others, especially kids, and to do so through the mediums of play, beauty, nature, laughter, and music. That’s why I have loved summer camp for so long and why I chose to work there professionally. It is that place, culture, and community in which I have found joy and learned how to share joy with others. (In camp jargon, we would say that camp is a place were a kid can just be a kid. To me, a kid just being a kid is a fancy way of saying joy.) Lately, I have not felt like this mission of my life has been being fulfilled at camp.

It is so hard to share something like joy when you don’t feel like you have it yourself.

I am so enamored with joy, so enamored with bringing joy to others. I wrote a poem recently were I talked about abandonment in the moment. It takes abandonment to truly get lost in joy. And anyone older than 8 as a pretty tough time abandoning self consciousness and worry to a moment of joy. What is great about camp is how much the culture of camp gives kids just a little more time to abandon themselves to joy.

Joy is essentially is all about abandonment; abandonment in a moment of appreciation of something greater than you. Joy is playing a game that is so ridiculous that you can’t breathe for laughing. Joy is screaming out lyrics to a song. Joy is an unexpected view, a cliff, a sunrise, a storm, a beautiful woman. Joy is wonder and awe soaked in a ooey gooey sauce of humility. Joy is abandonment. Joy is Christ. Joy is the resurrection.   

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So obviously, camp is not the only place to find joy. Joy is so much bigger than summer camp. Realizing that my life is meant for joy gives me comfort when I worry about what my life and career should look like. I know as long as I can share joy with others it doesn’t matter how I do it. God has it covered.

And that epiphany makes it infinitely easier to focus on what counts, namely the source of my joy and all that is good. If I focus on him, I am fueled. If I focus on him, I am FULL TO BURSTING with joy!

And it is so easy to share joy when you couldn’t keep it inside even if you tried.

There simply isn’t enough room.

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Whats your joy? What brings you meaning?  

ps 84:10

one day with You
is better than
a pecan & hot fudge sundae
topped with real whipped cream
and dark chocolate shavings

one day with You
is better than
riding every roller coaster
at cedar point
simultaneously

one day with You
is better than
learning that you have
cancer
on the day that they discover
the cure to cancer
which happens to be
waffle fries
wrapped in bacon

one day with You
is better than
bacon

one day with You
is better than
being a disney princess
and finding prince charming
and falling madly in love
and getting married
and living happily ever after

one day with You
is better than
sex

one day with You
is better than
world peace
(or whatever other “virtue” is trending on twitter)

one day with You
is better than
every good thing in the world that I can possibly
imagine
crammed into a box & tied
with a ribbon & lovingly placed on a bed of tissue paper
in a gift bag & personally delivered to me
by superman

one day with You
is better
than anything I am capable of imagining
one day with You
is better
better is one day with You
better is one day

God's Sunset

What is Real?

P1030794You want to know what camp is?
I’ll tell you what camp is.

Camp is a 19 year old who gets nauseous at the sight of vomit sitting on the bathroom floor holding the hair away from the toilet bowl for her 10 year old camper who made herself so homesick she threw up.

Camp is Saturday morning, when that same 10 year old clings to that same 19 year old and refuses to go home. There are no lakes at home, or horses, or 19 year old big sister/moms.

Camp is the 15 year old who gets nervous looking over the railing at the mall who chooses to climb a 30 foot telephone pole and step out onto a cable no thicker than his thumb.

Camp is the boy from the city who’s lying on the grass for the first time looking at the stars.

Camp is the only child who daydreams about having a little sister but instead gets to have seven (almost) twin sisters for a week.

Camp is the six year old who is so proud of her tie dye that her joy leaks out in squeals and giggles and a grin wider than should fit on her tiny round face.

Camp is the 16 year old who realizes that the younger boys are wearing their hats backwards because he does.

Camp is jumping in the lake, opening your eyes underwater, and feeling like you have discovered a new world, a world where you could live forever.

Camp is the man who feels like Peter Pan as he looks at the cabin he stayed in 25 years ago and drops off his son for his first summer.

Camp is making it up as you go along merging with 100 year old tradition supplemented with the schedule you wrote on a napkin sprinkled with a dash of the outline you forgot to print off the computer.

Camp is a game called Runscream, a game that you are absolutely positively certain means nothing, could teach your campers nothing, a game that is a time waster while you wait for your Real activities.

Camp is realizing that there is no such thing as Real and Not Real. That there is only Love and Not Love.

Camp is Love.

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