Cause I've been watching you dad, ain't that cool
I'm your buckaroo, I wanna be like you
And eat all my food and grow as tall as you are
By then I'll be as strong as superman
We'll be just alike, hey won't we dad
When I can do everything you do
Cause I've been watching you

One night in the hospital Mark spent some time trying to find something online.  When I asked him what he was looking for he told me "Something for John".  A little while later he had me watch a video he downloaded by Rodney Atkins.  The song is called "I've been watching you."  When I watched it, it made me cry.  Not only was the song so much about John, but it reminded me that Mark was so impressed with John's role as Michael and Danny's daddy.  The little boy in the song is four...and so was Michael at the time.

For awhile, Michael believed that Uncle Mark was really Superman...after all there is a picture of Mark dressed as Superman.  Markie loved that.  He also liked the times when the boys would come over and he would help them decorate eggs, give them candy he had near his bed that was specifically for them....or help Michael learn how to use the computer mouse.  Many of these occasions only I got to witness.  I know Markie wasn't real sure what to do with Danny....but soon learned that he could get Danny to pick up things in his room and put them away.  I know he loved tormenting them when they wanted his big candy kiss pillow....so much so that Aunt Jean finally sent the babies their own from Oregon.

Mark's biggest regret over having cancer and leaving us was that he felt that he didn't do enough for his nephews.  He didn't worry about his parents, but his heart was heavy over not being around for the boys and he told John so.

A couple of weeks ago, I put together some songs that Don loves to listen to that reminds him of Markie.  One is "Beautiful Boy," another is "Angel" and then there is "I've Been Watching You."  I know Don thinks of Mark watching him but I cannot hear that song without remembering that Mark picked it out specifically for his brother.  I hope that John not only sees this song as a description of himself and his sons......but perhaps as a gentle reminder that Mark is watching everything that John and his boys do.  After all, Michael and Daniel ARE Mark's legacy, too.  And....the song does mention Superman.

This weekend is Buddy Day in our family.  A special day with special meaning.  A remembrance of fathers and their boys.  Happy Buddy Day to John and his boys.  Remember the important message that the song Mark picked for you has.  Remember as well that there is someone else "watching you."

Tomorrow I will be leaving with Grandma Joyce and my good friend from work, Patti, to go to the blue water in Nassau.  I will be bringing back a bottle of blue water so that Father Edwin can use it to bless Mark's grave.  It will be a fun weekend for our family.....Mark will still be a big part of it.

I know he will be watching us.

I think both of my children are perfect.

Even though I haven't posted here in a week....I look and read Mark's website everyday.  It is almost to the time of a one year anniversary that I started this particular site.

When Marka first was diagnosed back in 2003, his Aunt Debe had a cyber friend she met through her travels on the Internet in researching her uncle's death in WW2.  Paul not only kept Mark's "moonfruit" website going for three years, but was a great support to all of us.  A stranger we never met.....and one we owe a debt of gratitude.  It became increasingly difficult to update Mark's course last year....the morning might be great, then in the afternoon we were rushing back to the hospital.  Because of the eight hour time delay, often things would not be posted as quickly as we needed.  So, one afternoon, I sat down at the computer and figured out how to do this website.

It was the afternoon that I found my healing tool. I am so glad to have this website.  I enjoy the many posts from people who sign in here.  They have been my support, my therapists.  Many did not even know our Mark...and then there are those that did.

I seek out Markie everyday.  Both Don and I want answers that will never be.  I stumbled upon the website for "Bereaved Parents".  I saw Gwen Houska's memorial mention for Kevin.  I saw Lois Brockmeyer's name as a contact for families that have lost a handicapped child.  I saw that last year their National Gathering was held in the town I grew up in outside of Chicago...Downers Grove.  I read that this year's National Gathering will be held in St. Louis in July.  Deb and Mike say three items make it a "Mark moment."  I think there is enough "items" to make this the right place for Don and I to go to.

This organization not only helps parents, but siblings, grandparents and friends.  I hope to find out even more about them.  What I really like about this organization are the many newsletters I have found online.

In one issue there are articles written by survivors such as the young woman who lost her only brother, the magic of hummingbirds (something that Aunt Deb and my cousin Susan subscribe to) and the pain that fathers feel.  I am hoping that Don will find this a good place to share his feelings. 

One article I enjoyed and have been thinking about is the one titled "Was your child perfect?"  I recognized early that when someone like Markie dies, those left behind tend to annoint them with "sainthood".    I have never met anyone like Mark...never witnessed anyone draw quietly from his faith to make decisions that none of us could make....love his brother "with all my heart" as he told me days before he died....and had the wisdom to make me make promises that would ensure that our family would continue to be happy.  He was quite a kid.  Yet, this article gave me great joy because it gave me something to think about.....all the little things that made up Mark yet would not be deemed saintly.

Mark could swear better, more often and more effectively than anyone.  When he was three my dad and me took him fishing....that is what he wanted to do with his Grandpa who was his birthday partner.  Mark put the worm on the hook himself..and promptly stuck the hook in his finger. "Shit!" is what he said.  My dad laughed....and when I started to scold Mark..Dad told me "That was the right thing to say."  As a teenager and a young man...he used off color remarks all the time.  He knew when he couldn't and I don't think he EVER swore around his sister or his nephews (I am certain never around his nephews).  But, that was part of Mark...using words a saint never would.

Mark liked to drink alcohol....and I would worry about him drinking.  He always told me the same thing on the phone when I would call him "Mom, I lost two of my best friends to driving and drinking...you think I want to go through that again?"  Mark liked to drink so much that there is a small tavern in Memphis not far from where he lived..and there is a drink named after him.  Mark's sweet tea or something like that.  His comment when he started chemo:  "Well, there goes drinking for awhile again." 

Mark liked to smoke.  I imagine some of his friends (Fatboy, Paul, Ryan) can give me earlier dates of when he smoked...and Angee tells me of stories of Mark stealing and then selling our cigarettes to neighborhood children.  I remember catching him with a cigarette after high school...he was standing in the front yard waiting for Tony Chytla to go play golf....he didn't know I was standing at the door.  He looked up, saw me, dropped his cigarette.....and I started laughing "Just HOW stupid do you think I am?" I said to him.  Caught, finally after years of sneaking, red handed. 

I mentioned to John the other day that his two boys remind me so much of he and his brother.  Michael is very much like his dad...I could sit for long periods of time with John and talk about all sorts of things.  We would carry on conversations from the time he was three through today.  Daniel, however, is much like his uncle.  Danny is a really good kid, but is always about ten minutes ahead of Granny.  That is the way it was with Mark....he had a knack for doing something, thinking of something, minutes before I would think about it.  I always felt I had to be on full alert with Mark....and I can sense the same with Daniel.

Was my child perfect?   I think so.

I have to leave for work in about ten minutes but wanted to mention what a pleasant afternoon I had. 

I had a dream about Mark.  Haven't had one in months and months and I don't usually dream when I take my nap before going to work.

I attended a school function....or what seemed like a school function.  A bunch of kids on stage singing.  Every so often someone would come out and sing a solo.  I was sitting in the back of the room and somehow was able t o sneak up to a seat in the front row.  It was then I saw Mark.  He was standing in the back of the stage on some risers.  He was with about two or three other boys.  Each of the boys took a turn and came to the front and sang a really short song.  I remember thinking "I am dreaming about Mark!!"

Then it was Mark's turn to come forward.  He looked about 14 years old and was making some goofy faces that he always did....rolling his eyes, acting like he was a little nervous.  He took the microphone and I thought "I never really have heard him sing."   He said "I can't really sing and the only reason I am here is that I wanted to tell my mom hi."

I have been so happy all afternoon.

I have been wanting to post something here the last couple of days but had to wait to calm down a little.

I just don't get it.

I do not understand why so many young people we are connected to have had, or are presently undergoing the terrors of cancer.  The last blog I posted was about people we have "met" through the DSRCT website.  Several months ago I took myself off of that website...just couldn't stand it anymore. 

Then I get an email from Scott Pope telling me that Gene's sister, Vicki, is in the hospital and had some MAJOR surgery......and has cancer.  A short, brief email that said tons.  Scott ended it with "I hate cancer."  How is it that one guy has two of his best friends (Gene and John) who have had to experience the horrible trauma of having their only sibling have cancer.  I just don't get it.

Gene was, and remains, a big source of support for our family.  Mark counted him as one of his friends...although like many others...Gene really started out as John's friend.  I know that John is as distraught as we are that Gene and his family are having to face the trials of having a loved one sick, and facing the months of chemotherapy.  Vicki is at Barnes Hospital and I stopped in a couple of times to see her.  I was really glad to see her the second day looking so much better, laughing and talking.  When I stopped by in the morning, she was asleep.  I look forward to her being even better when I get there tonight.  Please remember Vicki, Gene and their parents Connie and Gene.....this is a very scary time for them all.  I know too well.

Then, I come home and read the message in Mark's guestbook from Melissa Bizzle.  Now I am really really angry.  Within six months, people important to Mark have had cancer attack them.  I have been in contact with Melissa and then didn't hear from her last night.  This afternoon, it finally dawned on me that perhaps she was admitted to the hospital...and she was....to the same room Mark always was in.  I take that as a message from Mark that he is watching over her and she will be ok.

When I called Melissa's room, Nicki answered the phone.  She told me that they were "screening calls" which I am very very glad they are doing.  I did talk to Melissa and she seemed in very good spirits and was already getting treatments.  I am not sure I will get over to the North Campus to see her.....I haven't been back to that floor, let alone that room, since last May.

Our friends were so supportive and without them we could not have endured what we did endure.  Please remember Vicki and Melissa...I know that Mark is looking over them.

If you want to send them messages or cards or whatever....email me at Barba21885@aol.com and I will get you their addresses.

Also, keep Kelly Kuban's dad in your thoughts as well.  He has been quite ill the past couple of weeks.  A serious illness affects everyone in the family.  Outside support is always needed.

That, I get.

One day last week Donnie came home from work and of course stopped by the cemetery first.  He said "nothing is new there....I don't think anyone has been there."  I reminded him that the most important daily visitor was there...himself.....and that I know that a day doesn't go by that one of his friends or family members hasn't thought about him.  I can see for myself through the activity on this website substantiates that.

I still felt bad for him.  I had not been to the cemetery since New Year's and thought that I would stop myself on my way home from work and put something on Mark's grave so Donnie would have something new to look at.   I went to Walgreens and checked to see if Mary Miskovic was working (she was not) and looked around for something special to take to Mark.

All the Valentine decorations were in.  I remember when Mark was a sophomore in high school....and in between "girls".  It was Valentine's and he came home from school and said "I didn't get one Valentine. Not one."  I remember laughing at him and telling him that I would always be his Valentine....and had even put together a little Valentine treat for him.  I know it wasn't the same.  It was a little over a week later he met  Juliet..and for the next several years she was his Valentine....and even after they broke up....she remained very special to him.

So, I bought Mark a pretty foil heart and attached a note to it.  I put it on his grave.  There is plenty of room on the heart to attach others.  Next week, I will have Danny and Michael make special Valentines for Mark....I will laminate them so they withstand the weather...and put them on the heart with any others that appear.  I will keep them all for my memory box and remember that there was only one year Mark felt he didn't get a Valentine.

I am reminded of a day many years ago.  I had about $20 left until payday...just a day or two away.  I needed to get some milk so took Mark to the QuickShop with me.  I think he was about 8 years old.  He said he wanted to go in and get the milk so I gave him my last $20.  I didn't really pay any attention to what he was doing in the store but when he came out he had the milk....and I saw he had NO change.  He gets in the car, hands me the milk and said "I bought you sumpthin".  It was a ring....which he paid $12.95 out of the last of my money.  I laughed and said "I think I bought it!!"  He said...."no, I went in and picked it out and bought it."  I still have the ring. It didn't matter that I didn't have any more money for two more days.....I was the richest woman in the world.

Mark always liked buying things for his girls.  I know that he bought Juliet several pieces of jewelry...often taking every dime he had.  I know that he bought my mom a beautiful robe his last Christmas....leaving the pricey pricetag on it (even though he got it on sale).  I know that the last piece of jewelry he bought was for his sister (I don't think he EVER referred to Tabby as his sister-in-law).  And he bought me a ring at the Quick Shop with the last dollars I had to my name that week.

I am not feeling down this January.  I really thought we would be reliving last January each day.  Perhaps we were a little because on January 12th was Danny's birthday and I felt nothing but joy.  Not only because Danny turned 3.....but because I remember last January 12th as Mark's "turn around day."  He had a bronchoscope that day and we as well as the doctors were sure he would end up on a ventilator for a long time.  Instead, he comes back to his room, wide awake, breathing great, and feeling much better.  They were able to determine that he had RSV and got him on the right antibiotics.  Mark also woke up from the procedure swinging and it took six doctors and attendants to hold him down.  I remember telling the doctor "He's been wanting to hit you all week."

Even though we still had some ups and downs for the next six months.....a good part of the time Mark was stable.  I am going to take Mandy's advice and remember the good memories that occurred over the first six months of last year....and there were a lot of memories made.

You may have seen notes in the guestbook from Tammy....she lost her beautiful daughter, Starla, one year ago from DSRCT.  You will also see notes from Chris Hobbs....her husband is in his final stages of DSRCT now.  Both need remembrances, prayers.  They have kept our family in their thoughts throughout the past year.....and I know personally how hard it is to follow someone's course when that course does not end the way we wish they would.

Kyle in Tulsa is back in Houston....starting chemo and radiation.  He was diagnosed shortly after Mark's death and is doing very well.  His scans last week were clear. 

And then today I got word from Scott Pope that one of members of the Bachelor Pad has a family member who has been newly diagnosed from cancer.  I don't have permission to post anything here and will wait until I hear otherwise....but please say a prayer for those newly diagnosed and facing the terrors that cancer brings to a family. 

Rachel Voyles sent me a picture of Mark that I had never seen before.  It was great to see it and I printed it out and put it on my desk.  Thanks Rachel....just the boost I needed today.

Haven't been able to post here for a few days due to some computer glitch....

This past week I took some time and reviewed some medical records I had for Mark.  All of it I had seen at one time or another...but one sentence out of one report gave me a renewed respect for Mark.  I am sure I have read it before....but for some reason it never sunk in.

Mark knew.  He always knew.  He was told the day of the scan in Dec that he was not curable.  Anything done to try and fight his cancer would only help in maybe giving him a little more time.

Mark never told us that.

I don't think it was denial on his part....I think he was just trying to protect his family and friends. 
He never gave any of us any inkling of what had been told to him.  Always quiet about it, always fighting.

To think that until the day he made his decision to come home for good that he knew in his heart that he would be leaving us....gives me at least a little insight into the kind of person he was.  I know that he was protecting Don, John, me and everyone else.

This week we are often reminded of exactly one week ago.  Today, January 9th, was the day his belly started getting a little smaller....but his breathing became so worse.  It is the day that Drew Brockmeyer sat up with him the entire night telling him to put his oxygen on every five minutes.  Yet, I am not feeling so sad over that.  I am reminding myself that he is no longer suffering, no longer wanting to eat something but unable to....and no longer believing that he was the only one who knew what was going to happen.

I believe that one year ago today, I asked Dr. Tan if we could be somewhat optimistic...and he told me no.  I asked Dr. Tan how far into the journey we were...knowing that most people who had DSRCT had only about 18 months...he told me more than halfway.  I thought we had a least until September....we were actually much farther on the journey than believed.

Don and I raised an incredible young man.  I don't believe that I would have had the strength to endure all Mark did physically....all the time mentally protecting family and friends.

I have always loved Markie.  I knew him from the moment he came into the world and held him when he left.  But...after reading everything over again...I have such a renewed respect for him.