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Our Superman, Mark

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Please continue to leave messages.  Mark's spirit lives on in our hearts. As your messages helped Mark and all of us during his journey....they will also help his family and friends as they themselves begin to heal.

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Mark DeWalle is known for many things...determined athlete, member of the 1999 Missouri State 5A Football Champion Panthers of Mehlville High School, son, brother, uncle, grandson, nephew, cousin and friend.  Mark is a manager of Golf Discount in Fairview Heights, Illinois.   He is an avid golfer.  He is also a survivor of a 2004 battle with desmoplastic small round cell tumors...a very rare and aggressive cancer.  In the beginning of 2007 Mark learned that his fight with DSRCT was to continue.   On June 13, 2007...Mark finally found peace from this disease. 

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Tuesday, April 27, 2010

I'm Here

Whenever I think of those words, "I'm here" I immediately think of Mark.  There is magic in those two words...much more magic than I can ever put into my own words here.

Mark told me on the evening of Memorial Day 2007 that he was done with chemo, done with cancer, and only wanted to go home to sleep in his bed, be with his family and friends, and die his own way.  

I cried.

"Mom, ""I'm here and I will always be here.    I will never leave you and Dad and John."

Every day I think of those words.  It is very haunting to me how those two words, "I'm Here", came back to me again this evening.

My sister, Debe, who has so much going on right now, called me over a month ago.  She wanted to set a date to take me out to eat for my birthday.  Now, my sisters and brother are very close.  So close, in fact, that we have never felt compelled to celebrate each other's birthdays.  We remember, and in some cases we remember to send each other a card.  This was unusual that Debe wanted to take me out for my birthday.  I wrote it off as that she had a new look on things.  The chemo is making her more appreciative of the simpler things in life.  While this does remain true and that concept has hit all of us siblings, I found out tonight she had other motives as well as other accomplices.

After several phone calls and changed dates, we settled on this evening.  She was emphatic that she and Terry wanted to treat Don and me to dinner.  It was to celebrate my birthday and Don's retirement.  I both looked forward to this evening and also felt guilty.  It made me feel a little bad that Katie, Steve and Mike and Debbie weren't included.

We got to Westport right on time.  I thought it odd that she chose Westport.  It wasn't really a center place between Mehlville and O' Fallon but I figured since Debe gets out more than me, she would know the best place to go.  We actually met Debe and Terry in the parking lot and walked to the restaurant together.

Debe was unaware that the restaraunt had changed names and immediately left Don, Terry and me outside...in the cold drizzle.  Moments later, she came back out and told us we were in the right place.  The hostess acted as if she expected all of us and said something to effect "We are all ready for you."  She led us to a table for six....and I turned to Debe with a puzzled look.  "There will be six of us, someone else is coming and I won't tell you who.  That is part of your surprise."

Don immediately guessed that my Mom and her beau, Bob, would be coming.  No, we were wrong.  "Don't guess, you won't ever get it," she told us.  I finally figured out that she had arranged for babysitters for John and Tabby and any minute they would be walking in.

For those who don't know my sister, she is a lively, vivacious woman.  She kept us entertained while periodically looking over her shoulder.  After a few minutes, I saw my surprise and my heart absolutely melted.

Coming to sit with us was my wonderful friend, Marcus Engel, his wife, Marvelyne, and Marc's dog, Carson.  It was a total surprise, a total joy to see them.

Marcus was a patient of mine 16 or 17 years ago.  He was severely injured in a car crash caused by a drunk driver.  He was 18 years old and had his entire life ahead of him.....a life that changed in an instant.  I have always thought it interesting that my most favorite and challenging patients in my career/life have been named Marc, with a c or with a k .  There were several years where I had lost contact with him, then was able to reconnect with him in the past five or six years.

I am so proud of him.  He has taken what would be a disability to many and turned into something that helps so many people.  He, among many things, is a motivational speaker.  He is also an author.  A co-worker had attended one of his seminars and bought his book.  This co-worker brought it to work one night to show me that Marc had written about me.  Such beautiful things.

Even though I had not spoken to him in nearly 10 years, when I got home the next morning I looked up his phone number.  I called him, and when he answered I just said "Marcus...this is..." I never got my name out.  He said it for me.  He said he would never forget my voice.

We talked, emailed a couple of times.  I told him how it humbled me (and still does) that he remembered me, let alone write about me in his book.  He knew all the stories about John and Mark.  I told him of my joys of the football days and the excitement of Mark winning state in football.  I even attended a seminar at the junior college.  Afterwards, after I had him sign his book, I went and sat on a bench and just watched him.   I sat there and cried.  I was so very,very proud of him.

A year or so later, we learned of Mark's cancer.  My sister, Debe, had become a fan....no more of a groupie...of Marcus' and immediately contacted him.  I would get wonderful words of encouragement.   Mark got better and moved to Memphis.  At one point, Marcus was going to be in Memphis on a speaking engagement and Mark was going to arrange to play golf with him.  It never materialized, but I distinctly remember Mark's apprehension in playing golf with Marcus.

I told Mark that Marcus was a great guy and that they were cast from the same mold.  Mark knew this.  He had heard about Marcus ever since he could remember.  His apprehension stemmed that he felt if he played golf with Marcus, he would end up looking really stupid.

"Mom, if we play golf and I beat him...how does that look?  I am so mean that I would beat a blind guy at golf?  And if he wins....I look even worse 'cause it mean I can't even beat a blind guy."

I have chuckled with that conversation many times over the past couple of years.  I remember being so proud of Mark that he would open up his apartment to someone he had only heard about.  I was also happy at the thought that my two Marks would finally meet.  Both knew so much about the other.

When Mark got sick again, really sick, Marcus continued sending me positive thoughts and feelings. It was Marcus who encouraged me to continue this website.  In that respect alone, he has saved me thousands and thousands of dollars in psychiatric care.  He knew enough, that putting the hurt down in words can only have a positive outcome.  He learned it the hard way.

Mark died on a Wednesday morning.  Fate allowed, that even though Marcus was getting married and had moved to Orlando, that he was in town.  Debe and me met Marcus (along with Lois) for lunch two days later.  Debe was taking me out so I could get a new dress for Mark's funeral.  I wanted to look nice for Mark.  When I saw Marcus, I cried.  He just held me.  He shared my hurt.  I remember Marvelyne had tears in her eyes.  It was only the second time that I had met her.

I recall from that short lunch that I pretty much ignored Debe, Lois, and Marvelyne.  I consciously was trying to draw as much energy and support from Marcus.  He oozes energy, positive energy.  I know that I left that lunch feeling that I could face the next two days...that getting hugs and knowing others cared would be a big part of dealing with the loss of Mark.

I regret, so regret, that Mark and Marcus never met.  

We have kept in touch since then sporadically.  I have taken both his first book, and his second book, to administrators at Barnes.  I have shared his story here.  Marcus sent Meghan Hearst Carter copies of his book for Gateway MADD.  I am so very proud of his accomplishments.

Tonight, when he walked into the restaurant, I felt immense pride.  I was so happy to see him and was amazed at how Debe was able to arrange this.

He said he was in town as he had a speaking engagement at Missouri Baptist.  His new book was out.  I was thrilled when he pulled out copies for Debe and me.  Even though I knew this book was coming, and knew the title, when I saw the book my heart just raced and I could feel myself shake a little.

The title of his new book:  "I'm Here."

Now, he could have titled this book anything else.  I am quite sure those two words don't hold the same meaning for others as it does me.  Two words that help me get through the day because a beautiful young man, bald from chemo, thin from being unable to eat, had said to me almost three years ago to console me.  "I'm here, and I will always be here...."

I flipped through the book, looked at the table of contents, saw that he had already signed it for me,  but nothing was really sinking in.  I don't even know what the others were saying.  I laid the book down on the table next to my plate and just patted it.  I would stay up all night reading it.  

"She didn't see it." said someone.

Marcus told me "Look at the dedication page."

I did.  It said:

                         DEDICATION

               "For Barb DeWalle, RN and to the 

                    memory of Mark DeWalle,

              More than just a character in these books,

                       you saved my life,

            literally and figuratively, many times.

          I will always be honored to be your other Marc."

 

I was humbled, and of course I cried (which I am still doing).  It wasn't my name I saw...it was Mark's.

Don't ask me what the dinner conversation was about.  Don was just as humbled as me.  We looked at each other with tears in our eyes and knew that we would just have to talk about this in the car.  Don is a quiet man, but even more so when his emotions are tested.  He was overcome not only to finally meet the young man that I have talked about for so many years, but the honor that he had given to a young man he had never met.

I tried to put into words to Marcus and Marvelyne what this meant to me.  Marcus is stepfather to Marvelyne's two children.  They are parents.  I know they understand that all a parent wants for their child is to be happy, to be liked, to be loved and to be remembered.  Of all the kindnesses that have been given to our family over the loss of Mark, to have a book dedicated to his memory is something I will.....I just don't have the words.

I am so humbled because there are SO many people who have a part in Marcus' successes.  I remember when Markie was dying, I "channeled" Marc's mom.  She would stand at his bedside, trying to help him open get well cards.  Names would be read and Marcus would cry.  Unknown to him, his mother would stand next to him and start to cry, stifling her sobs.  I remember having to turn my head because I couldn't understand how a mother could be so strong when something so wrong was happening to her boy.   There were literally hundreds of nurses, doctors, therapists, family members, friends who Marcus could have dedicated this book to.   I am far down on the list.

It is something I will cherish for the rest of my life.  It is also the magic that I thought I wouldn't see anymore.  It is a new Mark story.  A new item for his cabinet.  It is a reminder of the promise Mark told me that he was here and always would be here.

The book is about "compassionate communication in patient care."  It is Marcus' story.  It also is Mark's.  Finally, it is mine. It is a reminder to me that I don't have just a job, I also have a mission.

Such a memorable evening.  I can't wait until tomorrow when I go to Missouri Baptist to hear my friend speak.

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Monday, April 26, 2010

Sometimes I cry, sometimes I just have to laugh

I just noticed that it has been almost a month since I posted here.  It isn't because I haven't thought about it or have been back here to read.....I think it is an accummulation of many things.

The days seem to roll into one another after a time.  I have missed posting about many things, many thoughts.  Some of it I just can't put into words.

I was having some more major computer issues at the beginning of the month.  I had to wait until taxes were done so I could totally erase everything and do a total system recovery.  For someone who is not real smart on the workings of a computer, I was successful in at least erasing everything that was on the computer and slowly getting it back where I could be online.

During this time, Don's sister, Jean, came back for a visit.  She brought a picture (which I will post) of her burying a Mark bracelet on the beach at Fakara, Tahiti.  We enjoyed her brief stay with us.  She has a lot friends that she likes to visit and I am glad that she feels comfortable staying here.  I told her this was her "Bed and Breakfast" and Don told her that it was only her "Bed" because neither one of us were going to get up and fix her breakfast.  So much for being a great hostess.

I am still having computer issues.  I can no longer, for some reason, get the wireless to work..even though the computer says I am connected.  Then, even when I am online with the cable connected, I can't seem to watch videos and seem to get booted quite often. I am officially putting out the word if any one can help me with this...I am open to suggestions.  I know my nephews could probably fix it in a second but they are busy with school, work and whatever.  Just is very frustrating.

Throughout the month...every single day....I still miss Mark.  I was glad that we had a an Angel Mom meeting last week.  I was interested in what "stage" each of the moms were in and have decided that there is no set time, no set stage, to go through.  I know that there are signs that I am "better"....one being that I don't feel I have to write every single night.  Instead, I am a little more comfortable, a little more stable with just having my thoughts.   There is no difference in my emotional status than what it was almost three years ago.  I still cannot wrap it around my head that Mark is not here.

Yet, I still get enjoyment over thinking of him every hour of the day.  I wonder how he would feel about his Dad finally giving up the truck.  It had over 190,000 miles and was starting to cost us money that we don't have, so he traded it in for a car.  I am dreading the extra payments we will have but as I like to say, "it isn't the worst thing that has ever happened to us."  I think Mark would like Don's car.

I have been working every sunny day that I can on the back yard.  So much of what we planted the past two years has just come up and it is starting to look really nice.  Mark's angel garden needed only a few annuals put in.  I decided not to put the pink Mandevilla vines back this year.  They have to be purchased and bought every year so we planted two small rose bushes where those would have gone.  They are still pink....in honor of Mark's girls who stuck with him until the end.

We liked how the morning glories gave us privacy last year so Don and I spent an afternoon planting those.  I noticed today that all of them are taking root really well....and some from last year are even coming back.

The Lily of the Valley that my Angel Moms shared with me are back.  Don and me spent a lot of hours clearing the mess that was alongside the back of the house.  Now that Sage behaves herself (perhaps it is her older age) and doesn't have to be chained all of the time, we have taken what used to be her area and Don put in a vegetable garden.  I took a small area and now have a little dragonfly birdbath that my mother gave to me.  I put our small fountain right next to it and it took Joey no time in discovering how much fun it is to play with.

Every minute I am planting, every minute we are doing something in the backyard, I am thinking of Mark.  It is the way I feel that I am able to keep moving, keep doing something positive.  It is my special sanctuary to think about him.  Everything we have placed back there has some tie in to Mark.

I wrote a real long letter to Mandy, and wondered the other day why I never heard back.  I know why....I found it in one of my purses.  I had never mailed it.  I am going to charge my phone and call her.  I thought about her a lot this month.  Her birthday was the 15th or 16th, can never remember which one.

I remember that three years ago........THREE years ago.....she flew in with Tyonn to go to Mark's golf tournament.  It was one of the happiest times for him during those final six months.  I feel so bad that I didn't talk to her this year, or that she didn't get the card and letter I sent her.  I must remember to charge my cell phone tonight so I can call her tomorrow afternoon.

I have been miserable this weekend with a toothache.  It was rough working Thursday night, unbearable Friday night.  I called in Saturday night...something I just never ever do.  I spent most of the weekend asleep.  Don called the dentist on Friday morning for me and got me prescriptions for antibiotics and pain medication.  Tomorrow I go and get this fixed and hopefully I will be back to normal.  I am fine if I don't talk......and that is hard for me to do.

So, I would take the pain medication and sleep.  Really sleep.  I had mentioned at Angel Moms that I had not had a dream about Mark for a long time.  Friday afternoon I did.  I had a dream that Don and me were in the back yard and we got a phone call.  It was from a police officer in Festus.  He said that he had just arrested Mark "and others" (the only one I can recall was Paul Dierker).  Apparently, Mark and his buddies had joined a softball league and they were "mouthing off" and so they were arrested.  Don and I went to the Festus jail to bail him out.  I yelled at the sheriff and asked him if he knew Mark had cancer. "Yeah, he tried to get me to believe that" was what he said.  I told him not only did he have cancer, but he had terminal cancer...and if Mark wanted to mouth off, he could.

It was funny, because in most of the other dreams, I know that Mark had died.  This one, he was still apparently alive.  Just to show you, I will never ever stop fighting for him.

It reminds me of another story of Mark...one that wasn't a dream and was true.  I actually found part of the video of this a little over a year ago.  Mark had arranged with some of his football brothers to go teepee some of the cheerleader's (sorry, Lisa) houses.  I remember he couldn't do Mandy's...or was afraid to...because it was in Jefferson Barracks and her dad was in the Air Force.  Anyway, both Don and I knew what was planned and we knew it was in good fun.  After all.....our house had been severely tp'd by John's cheerleaders a couple of years before (to the extent it was a two page spread in Mehlville's yearbook).  Mark was using my minivan.  He had taken the seats out so that they could put the hundreds of rolls of toilet paper in it.  He left fairly late in the evening and I recall that Erik Dessau was riding with him.  

About and hour or so later, our phone rings.  I saw on the caller ID that it was the police and took a deep breath before I answered it.  The cop said that he "had Mark" and was down at Ride the Rail pool hall down by Dairy Queen.  Was I aware that Mark was out after curfew????   I told him that I was.  Was I aware that he had the entire back of my minivan filled with toilet paper???  I told him yes.  "Apparently these boys are planning on doing something that is not good."  I told the police officer.....that these were good boys, that they were just participating in some harmless fun with some of their friends, and to quit making a big deal about it.  "You need to come get him because it is after curfew" the cop told me....I answered back.  "It will be a little hard because he has my car.  Just send him home."  Then he went into this big deal about Erik being there as well so I told him to call Erik's parents and they would OK him coming home with Mark....which is what happened.

Mark comes in the door a few minutes later laughing.  ""Mom, the cop said...Well, apparently your mom doesn't give a damn!!!!"  With him, in several cars, were some of his football brothers.  I remember that Scott Houska, Tom Kaesberg, Mike Mahler...and of course, Paul Dierker were with him.

So, I did what any respectful, good mother would do.  I drove them all around so that they could do their dirty work and not get arrested for being out past curfew.  Never did it cross my mind that I could be arrested.  Thank God, we were never caught.  The video is really funny, because I was really nervous, Mark was really excited, and at one point, I accidently leaned on the horn and the boys just let me have it.

As I was writing this, I looked over my shoulder at the posters of Mark's pictures we had on display at his funeral.  There, in the center, is a picture I took of the culprits before we headed out.  In the picture, Mark iskneeling down...smiling, laughing so hard....and Scott Houska and Tom Kaesberg are proudly holding packages of toilet paper.   I am posting it HERE so I can always have it available to me.

These are the things that make me smile.....even though I have taken too much time to write these down.

Sometimes I am crying when I am posting.  Tonight, I am smiling. 

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Pebble Beach, October 2004
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Mark hitting the "cancer" into the ocean in 2004

We lost our beautiful son, brother,grandson, uncle, nephew, cousin and friend on a sunny morning, June 13, 2007.  We will never be without him in our hearts.