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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, November 17, 2009

"The good old days"

 I have spent the weekend thinking.  That is all I have accomplished.  Just doing a lot of thinking.

John's birthday is tomorrow and I thought a lot about that time 31 years ago.  I recalled how I first learned we were expecting.  I was working in the ICU and there was a patient that was to undergo a cetain therapy where a pregnant nurse could not care for them.   My boss asked me in the morning if I was expecting, and I said I really didn't think so.   I had a miscarriage a few months before and pretty much put baby ideas out of my head.  Don and I had only been married for a little over a year, and we still lived in the little flat apartment in the city.

All we had was a small black and white tv, a dinette set, our bedroom set, and a chair.  Nothing else.  Everything we owned was in our closet.  I had only been an RN for 10 months.  We had absolutely no resources to start a family yet.

But, I thought it best to have a pregnancy test anyway.  Back then, Barnes would run pregnancy tests free for us.  This was long before home pregnancy tests.  On my way to lunch I stopped by my boss's office and told her that I had sent a test, and if they called...just to take the message.  No HIPPA back then.  The lab would call with the results and whoever answered the phone, got the news.

I went to lunch and came back.  I remember I was over at my patient's bedside and my boss came in and said "We'll have to move you to another assignment, you're pregnant."

I was absolutely floored.  That's how I learned John was coming....from a boss who was a little agitated that I didn't know myself well enough, and she had to change assignments around during the middle of a shift.

It became a point to Don and me to find a house.  It would never work having a baby in that little flat with no furniture.  It was a drafty, second floor apartment and we really didn't like the people who lived downstairs who were also our landlords.  They seemed to like Don and me well enough..we just didn't care for them.  They really started to get nasty once they found out we were house hunting.

We only looked for one day.  We didn't have much money and I remember when we went to apply for our loan, I wore something that hid my pregnancy.  We found the house that we still live in, and moved in over the fourth of July.

We slowly got to know our neighbors.  It was a fairly young neighborhood.  Seems like every other house there was someone expecting.  We were the last to deliver.

We, of course, never knew what we were having.  Every paycheck I would put a few dollars back.  Our parents helped us out tremendously.  I had no clue what to do with a baby, what one would need.  

I took off two weeks before John was born.  I remember one day, I didn't do the laundry because I knew I wouldn't have anything to do the next day.  Don started tearing out a wall in the basement and planning the fireplace he was going to build  

I went into labor early one morning, the Saturday before Thanksgiving.  We went to the doctor because stupid me wasn't sure if this was labor.  We went to the Walgreens in Hampton Village afterwards to get cigarettes, of all things, and I remember barely being able to stand in line.  Stupid.  That was about 9am.  John was born at 11:30am.

When the showed me John...he looked exactly as I imagined he would.  There could have been a room with a 1000 babies and I would have picked him out.

I held him (no car seat law then) in my arms as Don and I drove home from the hospital on Thanksgiving.  We had stopped at his parent's house for Thanksgiving dinner first.  We had our little red sportscar that we called "Elsie".  We took him in the house, showed him where all the rooms were, and where his bed was.

I put him in the bassinet, took off my coat, then realized I had no idea what to do with him.  I still tell new mothers today, that I felt totally helpless.  He didn't even come with a instruction manual.

Despite everything, I think he turned out pretty good.  We had four years of Johnny......only Jeff came into the family before Mark and Mick showed up.  Everything we did revolved around John.

Then, four years later, things changed.  Mark bursted onto the scene and I felt so much better prepared.  I never would have picked out Mark in the room of a 1000 babies.  He looked nothing like I imagined.  I also thought he was going to be a girl.  I had made his room all frilly and yellow and green.  He was, though, one beautiful baby with so much thick, black hair, that one of my nurse friends in the nursery actually cut it (a big no no).

John adored him.  When I look at pictures of my boys, I have dozens of them hugging each other.  From day one until the day Mark died, John seemed to always have his arm around Mark.  All through their childhood, teen years, and young adults, they were always hugging each other.  

I continued to work full time and my parents would occasionally take one or both of the boys to give me a break....and to do something special with them.  They loved going to my parents.  Don's parents had passed away by the time Mark was a year and a half.  I think my mom and dad tried at times to make up for Sophie and Richard.

Because Mark was Mark, and a baby.....the nights when he would go to my parents always gave  me  a sense of relief...sounds bad but I always felt I had a little breathing room.  We would know that this was our time with John and Don and I would frequently say "It is just like old times."

I guess we said this too many times.  One weekend, my mom and dad came out to take John.  Mark was about four and the two needed some time a part.  After John left, Mark looked at Don and me and said "This is just like old times!!!"

I laughed and said, "Mogey, there were NEVER old times with you!!!"

Maybe at that time it was true, but no longer.

How I miss those old times with Mark.

I guess every year at this time I feel that I am some sort of abyss.  It was the day after John's birthday that we learned that Mark may have cancer.  It was then that I told John that I didn't have the book on how to react when told your son has cancer.  That Thanksgiving in 2003 was terrible.  John went with Tabitha to Illinois.  I worked after taking a day off to try and comprehend what was facing us.  We didn't feel like going anywhere for Thanksgiving.  I had bought a complete turkey dinner at Schnuck's for Don and Mark....and that was it.  Terrible, terrible holiday for us.

Ever since then, even Thanksgiving is tainted.  This year, I work once again, but don't go in until 11pm.  This year John goes to Tabby's side, so we won't even see him.  Don and I will go out to my mom's and spend the day with her and whatever people are able to make it there.  There won't be any Black Friday shopping this year.  I will probably be at work all night and don't have any money to shop anyway.

I think both Don and I feel right now we are in some sort of abyss.  Bottomless pit of missing Mark.  We are trying to face the holidays with an open mind, yet try to back off from anyone or anything that may not understand or just lead to more uncontrollable feelings.

Last week, I had major computer problems.  I still do.  The CD drives don't work on my computer and I must say that this writing is the longest I have been onlnie without getting booted.  I haven't answered emails, haven't even read a lot of them.  I haven't had the energy to answer phone calls.  There are so many I need to return.   I am worried that Mandy will think I have totally abandoned her.  I haven't contacted the Heydes to find out about their new baby girl.  I haven't called Lisa.

Give me some time to put my thoughts in place.  I know these feelings will pass and I will be better in a week or so.

Until that time, I am going to be thinking a lot about the good old days.

 

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Friday, November 13, 2009

Always something missing

It is getting to that time of year, where no matter what is done, there is always something missing.

This Thanksgiving, this Christmas, it will seem no different than the past two.  We will go through the motions of getting ready.  We will gather with our family, we will shop for the babies, we will put up our tree.  We are better prepared than previous seasons without Mark since we know what to expect.

I still want the Christmas and Thanksgivings of the past.

We have told a lot of Mark stories this week with Mark's Aunt Jean being in town.  I realize that there is a lot of "Mogey Magic" around.  I feel it, I can see it when no one else can.

More than anything else, I love being an Angel Mom.  More than anything else, I hate being an Angel Mom.

I have tried to go beyone where I have been.  I have tried to do things, watch certain television programs that Mark loved.  Anything to fill the emptiness that will always exist because Mark isn't here.

I think of Markie no less than I did when he was here.  Every hour I think of him.  Every hour I try to trick myself into believing that what happened, never happened.

This is the year that John and Tabitha go "to the other side" for Thanksgiving.  Don and I will go to my mom's, then I will go to work.  That is the worst part of my job, working holidays.  Doesn't help that Thanksgiving is also our 33rd wedding anniversary.

It will be fine.  We will be with family, we will have our turkey.  It can never be perfect because we don't have Mark here.

Mark told us to go on living.  He told us to be happy.  He told us to take trips.  He told us to enjoy the grandchildren.  

For six months he was my Yoda.  He tried to get me ready.  He told me what he thought about life, his life, his beliefs.  I knew what he loved, what he didn't like.  He had no hate at all for anyone or anything.  He was grateful for what had come his way.  "Just think about that, Mom" was what he would say frequently.

He just never told me how to fill that empty spot, how to feel that something wasn't always missing.

 

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Monday, November 2, 2009

Gifts given to me...

I took off a few days this past week.  Don's sister, Jean, came into town for about 48 hours before venturing off on a trip to Spain.  Every couple of years Jean takes a really neat trip.  A couple of years ago she was here before she went on a sailboat (really big sailboat) tour from Venice to Greece.  Then a year or two ago she went to France.  This time, she is taking a riverboat cruise on the Douro River from Portugal to Spain.

We always love it when Jean comes into town.  This is the first time that Don has been off work for the entire time she was here.  She is coming back Sunday to spend next week in St. Louis as well.

I remember that Jean was here when I found out we were expecting Mark.  For some reason, perhaps it is that she was here when we first found out Mark was coming, there has always been a strong connections between Jean and Mark.  I believe, between her two nieces and two nephews, she knew Mark the best.  She, along with all of us, was devastated when Mark got sick.  During his remission, she was back in town twice in a four month time period...once in July for John and Tabby's wedding, and once again in October for Lindsay's.   In the short time between the two weddings, Mark's hair grew back and he was back to his old self.  He was also still living at home and was able to spend time with Jean.  He loved her dearly and really enjoyed introducing her to his friends at John's wedding.  I remember with such warmth in my heart, how his friends greeted her and referred to her as "Aunt Jean" at his funeral.   I knew Jean was flying in the day of Mark's first funeral day at Kutis, and it was one of Mark's friends who came up to me at the funeral home and said simply, "Aunt Jean is here."

I think that is what I love most about our son's friends....that they all referred to people in our family as Mom, Dad, Grandma, Aunt Jean.  I am sure it made Jean feel more included.  She was so far away during Mark's illness, yet someone I would call very late into the night, often waking her up, when I needed a shoulder to cry on.

Last week I also went to an Angel Mom meeting.  These aren't formal meetings, just Angel Moms getting together.  For me, this is always an important event.  So important, that I went to Angel Moms and was not home when Jean came in from Portland.  Jean knows how important these meetings and these ladies are to me.  Meeting with the Angel Moms at this time of year always helps me get ready and get through the holidays.  

Not that it has ever been said, but things mentioned or said in Angel Mom gatherings always remain between us Angel Moms.  What I have learned, especially the other night, was that I was given a gift the other Angel Moms didn't get.  All except for Lois and me, lost their Angels to trauma of some sort.  None of them were "natural" deaths.

Unlike the other Angel Moms, I was given the gift of time and conversation.  Lois had some time, although no warning that Jimmy's death was coming.  She could talk to him, sing to him (my very best memories of Jimmy are of Lois singing to him) yet he could only answer with that wonderful smile of his and those gorgeous blue eyes.

I was given two gifts with Mark....knowing that he was going to die, and also being able to talk to him about dying.

I always knew that this cancer was going to take Mark from us.  I knew it that day in 2003 when he told me "I found a lump."  I knew it throughout his first chemo and during his so-called remission.  It was a cloud that always hung over my head.  I woke up every single day asking "Is this the day Mark's cancer comes back?"  From October 2003 until December 27, 2006, I was in a constant state of panic.  I forced smiles and there were very few days that I wasn't consumed with worry.

I cried every single day....every single day.

I got into with a manager at work over this whole issue.  I felt like everyday I was having a heart attack.  I worried not about Mark moving to Memphis.....but what we would do when his cancer came back.

There were very few people I could take to about it.  Don, John and of course, Mark, believed that it was gone forever.  John told me once, "We are all on the same page."  I understood what he was trying to do....but I never believed it.

So, I internalized it, kept my fears to myself, and tried very hard to get on with life.  John and Tabitha's wedding, Danny's birth, are two of the days when I cried it wasn't about Mark...or perhaps it was.

I am rambling, but these thoughts just keep going through my head....and it is why I keep this website going.

I remember the excitement of the wedding.  It was such a wonderful diversion.  Tabitha allowed me to participate so much in the wedding.  She allowed me more than any soon to be mother-in-law should be allowed.  I remember when she, her mother and me went wedding dress shopping.  Tabitha walks out in one wedding dress, then another, and then another....and then I started crying.  It was the right dress.  Her mom, Linda, said to me, "You need this so much right now."  No one ever made a statement so true.

I remember how beautiful their wedding was, how proud Don and I were of John's choice of a wife.  I watched as the bridal party walked down the aisle.  I was fine until Mark walked down the aisle as best man with Tabitha's good friend, Cheryl.

That's when I cried.

It hit me at that exact moment, that months earlier I thought we would be attending a funeral.  Yet, here we were at this moment of John's wedding...and Mark looked so handsome (and so bald).

The day Danny was born, I spent the entire day at the hospital.  I think Danny was born about 1pm.  John came into the waiting room and told us he was here......and when John told me his name was Daniel Mark, then I started crying.  I sat in that waiting room for four or five hours before Mark and Don were able to get up to the hospital.  I didn't tell either of them on the phone the baby's name.  When John told Mark , all Mark could say was "I think I am going to cry." 

That all seemed like a hundred years ago. 

My panic state actually stopped the day Mark found out his cancer was back.  No more worrying...that dreaded day had finally come.  When I asked Mark what he planned to do ("Everything I can").  Then I asked him what he wanted us to do he simply answered "Never leave me alone." 

For the next six months, I very rarely left his side.

I like to think, even if it is selfish, that those six months were my time with Mark.  We soon had our own routine of getting his meds together, sitting up very late every night.  It is only recently that I have been able to watch programs we watched together.  Every single day of the first six months of 2007 were all about Mark.  I didn't care whose toes got stepped on, whose feelings may have been hurt, what to fix for dinner...nothing.....it was all about Mark.

He never took advantage of anything.  Never asked why, never asked for any more than we could give him.  He often got irritated with me....but always wanted me there.  We talked about everything.  I knew I was given a gift in that not too many moms of 24 year old sons get...their undivided attention.

My only regret is that I didn't journal everything we talked about.  I didn't keep a diary of those days.  How I wished I had.  The only thing I have is the entries I have on this website.

I knew our days were few and precious.  I just didn't realize at the time how few.

We talked about his childhood, how everyone was doing, how he was handling things, what he hoped for his friends, who he thought would be the next president and politics in general.  How he thought I spoiled Michael and Danny (true example of the pot calling the kettle black).  We talked about Heaven, his beliefs.

Those conversations are what sustains me today.

Yet, the real gift I was given....in addition to being the one that got to be his Mom.....was that I was able to say goodbye to him.

My sister Angel Moms didn't get to do that.

I thank God everyday for the time I spent...and continue to spend in a different way....with Mark.  But, especially after last week, I am thankful for the gift of being able to tell him goodbye.

I just wish I could say Hi one more time.

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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.