My Worst Day: 2.5 Years Post Transplant

My Worst Day: 2.5 Years Post Transplant

Don't be confused by the title of this blog.  I'm celebrating 2.5 years post double lung transplant on March 26th 2013, but I figured I'd go back and talk about my worst day ever.  It always seems to be at night when us with Cystic Fibrosis (CF) experience the most horrifying situation, but mine occurred during the day.  Lets put it this way, the room got real bright and I became dizzy.

I figured I'd enclose a song from one of my favorite movies, that being Into The Wild (2007) with the very talented Eddie Vedder (Pearl Jam) behind the pipes.  If you haven't seen it, rent it.  You will like it. Also, read the book, which both are true stories. RIP Chris McCandless. Google his name to learn more.
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My Bout With Massive Hemoptysis
July 2005 was your typical hot and muggy day.  I still remember when we had our central air on, I'd still have difficulty breathing, because one can't keep their air on 24/7.  This is why I enjoyed the winter months.  I was able to breathe better during those months.  Most CFers enjoy the warmer months better.

So for the next part I should give a disclaimer, because it'll get pretty graphic.  But if you checked out my 'transplant journey album' on Flickr, it's not that bad.

That July day I wasn't feeling good.  Shortness of breath (typical) all day.  A lot of time I'd sit in a chair and have to lean sideways in order to breathe better.  I was not on oxygen at this time, but that would soon change.

I was in my room reaching up to get something out of my closet and I felt a pop inside my lungs (upper chest) and all of a sudden it felt like I had a ton of mucus coming up.  The mucus felt as thick as that awesome Ghostbusters gel called Ecto-Plazm from the late 1980's.

It was gurgling inside my chest and airways. It was like I was gargling water. So I went into the bathroom to cough it up, but it was so much that I had to lean over the sink.  What I coughed up wasn't mucus, it was huge cup fulls of blood.  By this time my face was white as a ghost, due to not being able to breath because the blood was blocking my airways.  I knew I had to get it up. It was flowing out of my nose like water flowing out of a faucet.  I still remember the room getting bright white and feeling dizzy.  I knew I had to hold on.

First Trip To The ER

After about 5 minutes of trying to calm myself down and being able to catch my breath, I opened up the door and told my Mom to call 9-11 because I was coughing up blood.  She came bolting into the bathroom and I tried to shut the door so she couldn't see the sink, which by this time was filled with four 8oz cup fulls of blood.  The blood had clogged up the sink.  She saw the blood coming out of my nose and my mouth, even though I had toilet paper to try and keep it from flowing.  She was very shaken after seeing both the bathroom sink and mirror.  As she called 9-11, I told her to tell them that I'm able to walk and I'm coherent, because with that much blood loss, I wanted to make sure they knew my status at that time.  At that point I wasn't coughing up anymore blood.

Two blocks over there was a guy who worked for the fire department (volunteer) and he was here in 2 minutes.  The ambulance was here in about 4 minutes.  So a total of 6 minutes and everyone was here.  Police, ambulance, and volunteer.

When they first got here they wanted to see how much blood I had coughed up, or that was left in the sink.  My bathroom window was covered with blood splats from the blood splashing up on the window.

I told them I could walk to the ambulance, and I did.  I was very out of breath, but I did feel much better.  I just took each step one by one, which of course the neighbors had to have their scenery for the day.  I wanted to say.

"Jason Voorhees is here.  RUN!  RUN!  RUN!  He tried to kill me, and he's coming after you aaaalllllllllllll."

He he he he.

Wouldn't you know as I slowly crawled into the back of the ambulance, a pretty blonde paramedic was in the back of the ambulance. Just my darn luck.  Here I am covered in blood (insert Friday The 13th massacre scene) and blood coming out of my nose.

I cleaned the blood out of my nose and they placed me on oxygen and a mask as well.  I did cough up a little more blood while in the ambulance.  I hadn't been on oxygen in years.  Last time I recalled was back in 1999 after my hernia repair surgery.  That was post surgery protocol.  Each time I went to CF clinic, my oxygen saturation level was normal, but for the past 2 years I knew I needed to be on oxygen, but insurance won't cover it (at least for me) until you're at 89% or 90%.  Inside the ambulance mine was 84%.

So we headed off to the hospital with no sirens, thank goodness.  They placed an IV and I stayed at Huron Valley-Sinai hospital for a few hours.  They gave me breathing treatments every 30 minutes, because I couldn't get any air.  They even gave me steroids via IV, that still didn't help.  Time had to take its course and my lungs had to 'calm down' as I like to call it.  That took about 2 hours.  My head was killing me due to my Co2 level being so high.

Oxygen 24/7

We all agreed that it be best for me to be transported to my CF hospital at Harper University Hospital in Detroit, where I went every 3 months for my CF care and had been going for 9 years at that time.  I stayed in the hospital for 5 days and went home on IV antibiotics for 10 days.  I did go home on oxygen (3 liters) 24/7 because it felt like I blew a gasket and my life or my lungs would never be the same again.  Without oxygen, my oxygen saturation would dip down to 88%, but with oxygen it was between 94%-95%.  Before transplant (5 liters) it would be about 90%-91%.

It took me about a month just to recuperate from that bout with Hemoptysis (coughing up blood) I recall walking very slowly in the hospital (even while on oxygen) because I'd become very short of breath.  From 2005-2010 (until my transplant) I did cough up some blood.  The most would be a large table spoon at a time.

I knew I could've died or passed out, just from my airways filling up with blood.  My very first bout with coughing up blood happened in 2002, but that was just a table spoon size.  I had coughed up blood since that time, but nothing like this.  It was a scary moment in my life.  I did do some pulmonary rehab afterward to gain my strength and stamina back. I was never the same until my transplant.

How Did This Happen?

So how in the world did this happen?  It's very common for those with CF to cough up blood on occasion, and sometimes all the time, but it's the amount that doctors are concerned with.  It's not common to cough up the amount that I did, but it can happen, and does.

I did have pneumonia, which I had pneumonia/infection all the time, not even IV antibiotics worked well.  After 21 days of being on IV antibiotics, my mucus would still be green.  I was getting worse, the IV meds weren't working as well as they had years prior to all this.  I had pneumonia and the amount of infection I had busted some of my main arteries in my lungs.  So when I leaned forward to get in my closet, some of that moved and popped.  It busted quite a few arteries and I even coughed up several pieces of Aveoli.  My CF doctor told me that's probably not what I coughed up, but I'm 120% certain it was.  They were little tiny ball like objects and if you cleaned the blood off, they were clear.  We didn't keep any, nor thought to keep any since this was an emergency and I was more concerned with my breathing and trying to calm my lungs down.
 

So that's the story about my worst day living with CF.  Could I have died?  Yes.  I knew that, but luckily on my death meter, this was a 8.5 out of 10.  I would have about 2-3 more bouts with having difficulty breathing (major) episodes before my transplant, which was scary.


One time I woke up around 4:30 AM to use the bathroom (25 feet from my bed) and (while walking slowly back to my bed) I was having extreme difficulty breathing.  So I stayed up and took a breathing treatment, hoping it would help.  It did for about 5 minutes, then I had to place myself on my Bi-Pap machine to try and 'calm' my lungs down. 5 AM rolled around and my Mom heard me in my room.  I told her I wasn't doing good.

In the back of my head, I thought this was going to be another ER call, and I was afraid I wasn't going to be able to calm my lungs down, as I breathed in so deep my rib cage was hurting and I was shaking. 

So what helped?  I cranked my oxygen to 10 liters (from 5 liters) and watched Mortal Kombat on TV (laughs), which it took my mind off my breathing and gradually my lungs calmed down, thanks to my Bi-Pap machine.  It took nearly 45 minutes.  I rolled back into bed and slept quite a bit that day.  I was tired. 

Thank You, Gretchen

So now I turn my attention to my lovely donor Gretchen (below), who 5 years later would save my life, and who's family I'm thankful for for making that heroic decision.  Here's to 2.5 years on my warranty :)

Hard Sun by Eddie Vedder (from the motion picture soundtrack Into The Wild- 2007)

In Memory: Camp Onkoi Benek

Created: March 10th 2013

My first year of Cystic Fibrosis (CF) Camp Onkoi Benek (To Conquer Tomorrow) was in 1988.  I had the privilege of knowing and meeting a lot of friends through the years, but sadly a lot of those friends have passed away.

I thought I would devote this section of my blog to those that I've lost in the past 25 years, so hopefully in 2 yearsr, I'll have all 22 friends (2 none CF) in this memorial section.

I attended Camp from 1988-1996 until it discontinued.

Please click on 'story' below to read my memories of each friend.

Thank you.

                 Margaret's Story                                   Dana's Story

   

Rainbow Connection- Kenny Loggins version (1994)

Margaret Rosekrans (Michalski)

Chapter I

My First Camp Friend

March 10th 2013

I just finished my first week ever at Cystic Fibrosis (CF) Camp Onkoi Benek (Indian phrase = "To Conquer Tomorrow"), which is on the outskirts of Battle Creek, MI in Dowling, MI.  I was pretty bummed on the way home from CF camp '88, knowing I had just experienced the best week of my life.  I got to meet some awesome people that week, including other kids and adults with CF, which I had never done before.  My CF friend Brian Weber (RIP, 1996) was actually the one who told me about CF camp at Karate class back in the winter of 1987.  For whatever reason, my parents decided I could go the next summer.

That ride back home seemed to go by quickly, probably because I slept most of the way.  As mentioned, I met a lot of great people that week, but one person stood out, and for some reason, I knew that I'd continue to be friends with her for the rest of my life.  Elizabeth Michalski was the first CF friend that I had met, as she took our patrol under her wing and adopted us.  Liz and I had a wonderful week together and I still remember how we met.  

My patrol and I were outside the dining hall near the girls and boys bathrooms. We were looking over our schedule for the day. I remember this girl who was sitting on the sofa and she said.


"Hey cutie, come here."

I was holding a red gym ball in my hand, and as I turned around, I saw the most beautiful girl I had ever seen in my life.  I walked on over and sat on her lap.  The rest is history. I remember looking in my goody bag that I got from camp and it included campers' addresses, but I just glanced at it. I thought it was cool that I could keep in contact with the friends that I made that week.

I remember getting home and going through my goody bag while my parents were outside on the back porch.  I skimmed through the addresses, but I couldn't find Liz's.  I didn't know Liz's last name, I just knew her by her first name, which to me was Liz.  I didn't know that her full name was Elizabeth Michalski.  So I started to panic. I searched and searched, but I couldn't find Liz.  I cried and felt empty inside.  How was I going to ever contact her?  I was so sad.  What was a 9 year old boy to do?

Two weeks had passed since camp. I slightly remember my Mom going out and getting the mail.  She told me I got a letter from Liz.

I jumped up for joy and yelled.

"YES!"

Lizzy finally contacted me. I was so happy and excited. Liz basically said she had a great time at camp, and meeting me was the best part of her week, but in the letter she mentioned something that immediately made me sad.

Continue. . .

'Clocks' by Coldplay (2002)

Twin

  Chapter II

   Twin

So there I was reading the letter that Liz had wrote me, it was the first letter I received from a camper.  Liz mentioned that she wouldn't be attending next years camp, and it broke my heart.  I had just met this wonderful person that was a huge spark in my life. . . and she writes and informs me that she's not going to be at camp next year.  She never gave me a reason why. I remember thinking.

"How does she know she's not going to be there this far in advance?"

I continued to read the back-to-back one page letter, and she wrote that she expected me to be at camp next year, because her twin sister Margaret would be attending.  Twin?  I never knew she had a sister, let alone a twin.

A lot of things went through my mind as I read her letter. How would camp be next year?  Would it be as fun?  I remember feeling like I would never see Liz again.

So the months passed and Liz and I continued to write each other.  I told Liz how I was doing in school and she'd tell me her adventures while traveling, and attending University Of Michigan-Dearborn.

We'd send each other pictures, and luckily a few campers sent me pictures from my first year in 1988, because I didn't know to bring a camera.  I pretty much was a rookie.  He he he.

Anytime I wrote my camp friends, I'd always have music playing in the background.  I remember one time 'Just Like Heaven' by The Cure (1987) was playing on the radio as I was writing Liz, and the song stuck with me, and has ever since.  It reminds me of both Liz and Margaret.

Early winter of 1989 I received my registration papers for camp.  I was still sad about Liz not going, but I was looking forward to meeting her other half. The only thing I knew was that her name was Margaret, and I assumed she looked like Liz.

Four months had passed and I remember packing for camp.  The excitement was on and I knew I couldn't forget my walk-man (the days before CD players) and grabbed a few tapes of mine, one being The Cure 'Just Like Heaven' Oh yeah, I did remember to bring my camera.

On the way to Dowling, MI I remember thinking.

"How am I going to know what Margaret looks like, and how's she going to know who I am and what I look like?"

The many questions a 10 year old thinks about. HA!

Continue. . .

'Just Like Heaven' By The Cure (1987)

Meeting The Other Half

Chapter III
Meeting The Other Half

So there I was in the backseat of our car, and I admit, I was pretty nervous.  I didn't know what to expect heading into my 2nd year of camp.  Our theme for that year was Beavers In Space (beaver being our camp mascot)  Our theme the previous year (Camp '88) was WBVR (TV station), which if I recall, throughout the week we took game shows or things that were on TV and gave them a 'beaver' twist.

First thing that everyone did when they got to camp was unpack their belongings and to see which bunk they were assigned. I hadn't seen anyone that looked like Liz.  So my folks and I headed over to pick up my camp t-shirt.  I remember standing in line and looking around, but I didn't see Margaret anywhere in sight.

Then as I went to pick out my camp t-shirt, I looked up and saw this gorgeous blonde and right then and there I knew it was Margaret.  She looked at me with a smile and said.

"You must be Jesse!"

then I replied.

"Yep, and you must be Margaret."

I remember the first photo I took of Margaret.  She was coming out of the area where PD was done and she had a red twizzler in her hand.  I snapped a quick photo of her. 

That week was awesome.  I remember spending all my free time with Margaret, and Liz was right, she did take her place for that week. 

Every morning Margaret did my postural drainage a.k.a. PD (pounded on my back and chest to get the mucus up out of my lungs) and we ate together, went to the dance together, just like Liz and I did the previous year.  It was just a remarkable week and I had met a wonderful friend.  A friend I knew I'd have for the rest of my life.

I don't recall if it was Liz or Margaret (I'll go with Margaret) but for some reason she went bonkers when she ate marshmallows.  She was really silly. It was so funny, and I remember her telling me something about marshmallows, because everyone was eating roasted marshmallows. I'll never know which one it was, but it was funny seeing Margaret being silly.

Continue. . .


                      

'The Flame' By Cheap Trick (1988)

The Dance

Chapter IV
The Dance

I always enjoyed our camp dances each and every year. My favorite photo of Liz and I is from our dance at camp 1988 (first page), and my favorite of Margaret and I is the photo on the first page, where it's dark outside. I've enclosed a photo of us at the dance.  I was an alien from Mars and I believe she was dressed in a princess Leia type outfit. 

I actually made my costume at home (before camp) with just a trash bag. I colored and stapled the planets (including stars) in our solar system on it, mostly just the front.  The glasses I got at camp, including the plastic blue tubing. I'm not sure how it came about me getting those awesome glasses.  They lit up. I also got the white gloves from camp as well.  Why the gloves?  My hands sent off radiation, thus the gloves protected the earthlings.  You gotta love my imagination.  The song below pretty much goes well with my costume.

I had an eye opener to say the least the next morning.  I woke up and my left eye was swollen and it looked like someone had punched me.  Margaret was going to meet me by the boys dorm at 7:00 AM, like she usually did so she could do my PD.  I remember when she saw me, she was in shock and said.

"Jesse, what happened?"

I told her that I had no clue why my eye was swollen, but the only thing I was wearing yesterday, or at the dance that was near my eyes were those glasses.  So sometime that morning I saw Dr. Mike (Mike Cawley) and that was the only thing we could come up with, because nothing was in my eye.  I'm thinking the plastic (mixed with my sweat) got into my eye, causing it to swell up.  Luckily within a day or two, it got better and by the time I went home it was all gone.

I still remember the look on Margaret's face when she saw my eye, she was pretty freaked out.

I remember on the ride home I was sad, like everyone was when they left camp.  A lot of us knew our friends might not be returning, not because they had other plans, but because they would die from CF.  That was the truth and the sad part about CF camp.  I never thought that way about Liz or Margaret, I knew they would be back, or at least I thought.

Continue. . .





                
'Pump up the volume' by M/A/R/R/S (1987)

Heart Broken At 11

Chapter V
Heart Broken At 11

So how was this going to go?  Was I going to write both Liz and Margaret in one letter, or write them two separate letters and stick them in the same envelope, or write them separately?  I chose to write them separately, knowing one or the other would still read the others letter. I continued to keep in touch with both sisters, and of course we both sent each other pictures.

I was heading into my 3rd year of camp, and our theme was going to be beavers in history, celebrating our countries history.  I hadn't heard from Liz or Margaret about returning to camp, but I assume at least one of them would, then. . .  I'd get the letter that changed everything.

I'm not sure who it was that wrote me (Liz or Margaret), but they told me they both wouldn't be attending camp that year, due to being in Indianapolis, IN.  WHAT?  I was heart broken.  My two best friends from camp wouldn't be attending. I knew they both attended college (I believe they were out for the summer) and I knew they traveled a lot, but why?  Why now?  Why the week of July 7th - 14th 1990?

I was still going to camp, but it was one week I wasn't as excited about.  Two people I cared about the most weren't attending, and my 11 year old heart was broken.  So what was a kid to do?  Pray.

I prayed so much for the next two months on a daily basis and never missed a day. Some days I just prayed for a few minutes, but some I prayed for 30 minutes. I just remember thinking how could this happen?

Meatloaf once sang "Two Out of Three Ain't Bad", but one out of two ain't bad either. I was hoping that at least one of them would come to camp.

Camp was roughly 70 something days away and I was losing hope very fast.

Continue. . .

Miracle In Dowling

Chapter VI

Miracle In Dowling

Camp was nearing, as July 4th had passed.  Only three days left.  Anytime 4th of July hit, the excitement was really boiling and I loved 4th of July.  The smell of fireworks, the popping, and the thrill of lighting them off.  Not to mention the pretty colors as well.

Something just wasn't right about that 4th of July in 1990. Oh wait, that's right.  Liz and Margaret weren't going to be at camp.

A day or two before camp I always packed my belongings and medications.  I think I wrote Liz and Margaret a few weeks before camp and told them that I was going to miss them.

I did my annual thing on the way to camp.  Listened to music.  I remember listening to 'Pictures Of You' by The Cure and that song just stuck with me and it reminded me of Liz and Margaret.  The song holds true, and it seemed like the pictures of them were so real.  The song came out in March 1990 and I remember buying the cassette tape and I played it over and over again on the way to camp.

After I got to camp my parents and I unpacked and I went and got my camp t-shirt.  I admit, it was nice seeing my friends, and Neal Dantes was my patrol leader that year.

I remember it like it was yesterday.  My parents were still there, but I was talking to someone and I remember hearing the voice.

"Hey Jesse!!!"

I looked to see who was calling my name, and time stood still.  Let me give you a good description.  It was like living in Michigan and not seeing the sun for several weeks during the winter months.  Then all of a sudden you look out the window and see the sun.  It glazes over the first layer of your skin, and you feel the warmth of its rays scatter across your arms and it leaves you feeling happy, energized, and warm.  That is exactly how I felt when I saw who was saying my name.

"Liz, Margaret, OH MY GOSH!!!!!!!!!"

It was a miracle.  I couldn't believe my eyes.  I thought I was seeing two ghosts.  It really was Liz and Margaret.  I remember bolting real fast and hugging both of them.  It was a moment that I didn't want to let go.

So that's kind of how I remember it.  Then again, I remember only one of them calling out my name, and Liz or Margaret was somewhere else.  They told me they'd gotten back early and wanted to surprise me.  So basically they knew they'd be back in time for camp. I was in shock.

That week was so special and it combined camp 1988 and 1989. 1990 was my favorite year of camp.  I had never been so happy during that week, but sadly, I don't remember everything that happened.  I wish I had a time machine so I could go back and see myself and relive that week.

Since both Liz and Margaret are polish, they both would talk to each other in polish off and on during that week, and of course I couldn't understand what they were saying. It was funny, because I would try and figure out what they were saying.

My Mom took a picture of Liz, myself, and Margaret together during the first day of camp.  It's my favorite photo from the 8 years that I went to camp. I remember thinking while my Mom was taking the picture.

"Please Mom, don't mess this photo up, this one is a keeper for sure."

Sadly, I don't have many pictures of us together or at the dance.  I would give anything to have more pictures of us together, Liz or Margaret.

I do remember saying goodbye to both Liz and Margaret. It was the sad part about camp, those goodbyes were tearful. I remember being wet on the way home, because a few of us had a water gun fight, as you can see in the photo enclosed of myself, Liz, Margaret, and Jimmy LaFrance (RIP)


Continue. . .


                   
'Pictures Of You' by The Cure (1990)

Death Of An Angel On Earth

Chapter VII

Death Of An Angel On Earth

Sadly, that was the last time I saw Margaret and the last year her and Liz attended camp.  I never knew the reason why they never attended camp again. It could be because Margaret had/picked up Cepacia, which for those that don't know is basically a nasty bug that CFers can pick up that is resistant to a lot of medications. No one ever told me the reason, nor did I ask.  Liz did come and visit at camp 1991, but just for the day.

Liz never returned to camp after 1990 (for the entire week), though it could have been because she got Cepacia from Margaret, since both lived in the same household.  Though, neither attended the second session of camp (Cepacia positive) either, as 1991 was the first year that there were two sessions, thus the theme was 'Back-To-Back'

Five years would pass, and we all continued to keep in contact.  I headed into my teenage years. I had several girlfriends, many friends, but I never once forgot about Liz and Margaret.

There I was living my life like a normal 16 year old, well. . .  a 16 year old who was helping a neighbor down the street.  It was a misty April day.  I believe it was the first week of April and my day was going great.  I was in a wonderful relationship with Melissa Perfetto-Adamson (pictured on the upper right side of my blog with the hearts around it) and we had been together for 7 months.  I was a freshman and she was a sophomore, both the same age.

I headed home. I was tired. As I walked in my Mom told me I got a letter from Liz.  I was pretty happy.  She told me that I needed to sit down, she had something to tell me.  She told me that Margaret had passed away.

"What, huh?"

That was the only thing I could get out of my mouth.  I remember my heart was pounding. My mouth got really dry. She handed me the letter and I started reading it.  It was addressed to my parents and so was the envelope.  Liz mentioned that Margaret died from an acute lung infection and I'd later learn that she was too bad to get listed for a double lung transplant.  Margaret was only 26.

My stomach felt like It had been kicked over and over again.  Margaret was the first real close friend (well, close to me) that had died from CF.  Joel Rabideau was another CFer that I knew that passed away in 1991, but this one hit me real hard.  This was the first, but gosh, I had hopped it would be the last.  I'd experience it 20 more times.

I didn't cry right then and there, it was still sinking in, and the thought of not seeing her, talking to her, writing to her ever again hadn't sunk in.  I must have read that letter about 10 times over and over again.  I still couldn't believe it.  I didn't even know she was sick, and the fact that she had passed away 3 weeks prior to me receiving the letter from Liz.

I remember going into my room that night and shutting the door.  Usually I went to bed at 10 PM on a school night, but I flipped on my radio, played the song you're currently hearing, and read all of Margarets letters that she wrote me through the years.  One minute I was a 10 year old boy with a huge smile on my face, the next I was a 16 year old drowning in my own tears.  I stayed up for the next 4 hours just crying and remembering all the times I had spent with Margaret.

Margaret died on March 11th 1995. I remember at camp '95 I was on my bunk looking out the window, visioning Margaret walking by and waving.  I do remember crying that night at camp and just remembering Margaret and the time we spent together.

When Melissa saw me the next morning at school, she knew something was wrong, because my eyes were red and puffy looking.  I told her what had happened and about Margaret.  I remember that morning (after I found out Margaret had passed away,) I just put on my pants, a lime green sweatshirt, and took my meds and went off to school.  I didn't even really care to do anything else that day.  I just knew life wasn't going to be the same, as apart of me had died.

In the letter Liz asked my parents if I wanted to I could call her and talk to her.  I remember calling that night or the next day.  I'm not sure what we talked about, but I could only imagine the pain she was in, losing not just your sister, but your twin.

What got me through those first 3 months?  Van Halen.  Each and every morning I would listen to 'Not Enough' (current song playing) on the way to and from school.  Sometimes I'd listen to the song several times in row.  By that summer I went out and bought the CD Van Halen: Balance, because my tape was wearing out quickly.

Continue. . .

'Not Enough' by Van Halen (1995)

18 Years Later

Chapter VIII
18 Years Later

So here we are.  On the final chapter.  I'm not sure what taste in music that Margaret had, but 'Sailing' by Christopher Cross (who still tours) is one of my favorite songs from 1980, and I think she'd like it.

Looking back, I realize it was very hard on me. The first six months were hard, but somehow, someway, I was able to cope with everything and actually not cry when I thought about Margaret after those first six months.

I remember about a year later I called Liz from school (Yearbook class) and asked her where Margaret was buried.  She had told me where she was located.  Finding Margaret at the cemetery in Novi, MI wasn't an easy task, as all the grave stones are flat.  So I remembered what Liz had told me and finally found Margaret about 45 minutes later.

"Boy, you sure are one hard girl to find Margaret."

That was my first words to her back in 1996.  I'm not sure what I talked about, but there was a lot of crying and a lot of getting out of breath, but I knew it was something I had to do.  It was the closest I had been to her since camp 1990.  I slowly and gently placed a flower on her tombstone, wiping away tears as they dripped to the ground.  

There I was, that 10 year old boy looking up and seeing the most gorgeous smile I had ever seen.  There I was 6 years later looking down at the ground, at a memory, at a friend.  I stayed there for about an hour.  I still visit Margaret from time to time.

It has been 18 years since her passing and I think of her often.  It was a very difficult time in my life, one that I've never shared until now.  I'm glad three weeks later I'm able to write what I've always wanted to for the past 18 years.

These people that I've met at CF camp will always be friends to me, no matter if I do or don't see them in person.  Each person means something to me, some in different ways, but this is why I wanted to start this Camp Onkoi Benek memorial, to remember, and to show others how much they meant to me.  These were my Wonder Years.

Somewhere. . .  Margaret is sailing.

THE END

20 Years Later. . . Remembering Margaret

Back to. . . 

In Memory: Camp Onkoi Benek

'Sailing' by Christopher Cross (1980)