Somewhere over the weekend I either heard or read the statement that "one is only as happy as their saddest child."  I believe that is very true.

I want to believe that Mark is happy but my last interactions with him were not really happy circumstances.  Mark was, for lack of a better term, compliant with what was happening to him.  He wasn't necessarily 100% happy that he was given this road to travel, but he didn't fight it.  He took what was handed to him and tried to make the best of the short months that he had.

Over the weekend, two more boys with DSRCT died.  One was very young, and one was about Mark's age who also was named Mark.

I think DSRCT has enough Marks now.

I still find myself thinking and talking about Mark all of the time.  I learned from Angel Moms that not only is this not unusual, but will probably last the rest of my life.  I mentioned to my friend, Patti, at work the other night that I know I talk about Mark all of the time and that I certainl appreciate her always patiently sitting there, hearing me over and over.  Her comment made me feel better, that perhaps it was still the way it always had been before Mark died.

"Barb, you always talked a lot about Mark, even before all of this happened."

That made me happy.  That made me remember the one constant throughout all of this....I always have loved to talk about my boys.

I have been busying my mind with the events to come this spring.  Don and I are planning to add a small brick wall around Mark's garden.  We are going to use glass blocks in it and we have been practicing etching dragonflies into the blocks.  We are going to light them...but of course not until dragonfly night.

I think about Dragonfly Night a lot.  It will forever for me be the night before the mornig of June 13th.  It will be our vigil....utilizing the hours to remember, to laugh, to cry.  Last year it was very impromptu with many friends stopping by.  I hope that happens again.

I am compiling another picture video project and am using as many of the pictures as I can to scan into it.  It will take me months, but then, it will give me a chance and excuse to look at Mark's pictures again and again.

If anyone has a picture of Mark that they can send to me, I would certainly appreciate it.  Every new picture, every new dragonfly, is a hello from Heaven for me.

In every picture I see, Mark is happy.  I don't think I have one of him crying.  I am going to try and remember that this week....that I can be as happy as him.

I miss you Markie.

I have spent the morning listening to Scott and Betsey on the radio.  It is fun but at the same time a little aggravating.  I know that they should be ahead and I wore out my finger hitting redial to never get anything but a busy tone.  Everyone vote everyday from wherever  you can get to a computer.

Last week was Angel Moms, and once again it was so good to be with these Moms who understand every thought, every emotion.  Every single time I come out of the meeting feeling comforted and with some determination to continue to follow Mark's wishes to go on.  It is very hard not to be sad. It is even harder to realize that once we all return to our homes, our kids are together still in Heaven.

I have not heard from VA in awhile and have pretty much decided to just forget them.  I think five months is long enough for them to get their act together.  I am finding that perhaps my mission is to be where I am...where Mark always knew my work phone number, working with people who knew Mark when he was little, and understand our loss.  I think I have put things in order with caring for cancer patients.  Perhaps not only compassion but being able to tell others my story will give a sense of safety for those who are facing the trials that Mark faced, as well as his friends and rest of his family.  I am not expressing this very well. 

Last week I moved the computer, the desk, and everything back downstairs into Mark's old bedroom.  After I set everything up, I realized that this is where I would sit and "talk" to Mark on the computer.  I have the computer, my desk and my crafts all in one room.  At first, I believe that Michael and Daniel were not real happy that their toy room had taken on more purposes than what they were used to, but they sure do seem to enjoy doing crafts and watching The Three Little Pigs on Youtube.  We now have a spare room upstairs that we will soon put a Pack and Play for our new baby.  A place for everyone.

In a few weeks my schedule will change and I will be back to three twelve hour shifts a week and hopefully have more time.  I feel that all I do is sleep and get ready for work.  I am looking forward to having more time to think.  I have been too tired to answer the phone, write on this website.

I have spent everyday of the past week remembering that this was the time, two years ago, when Mark was so very sick and we realized how so very important his friends were to him.  I remembered thinking last night on the way to Barnes how I spent the entire month at the hospital.  I am feeling a little lighter today because at this point two years ago, Mark was beginning to feel a little stronger and we were starting to prepare to take him home.  I don't think I will ever go through the first weeks of January without remembering how awful January 2007 was.

Putting Don's book together for Christmas allowed me to go through each day again.  As depressing as it was to do that, I can only think how glad I am that Mark's journey didn't last years.  We lost a lot of Mark during those first weeks.  He gave up a lot of his hopes, his dreams, his plans.  He became a smaller version of what he had been.  I knew that I would never again see him happy, healthy, with a full head of hair.  It was the beginning of forever for us.

I miss him so terribly much.  Yet, when I read the DSRCT website and the desparate measures people are trying to go through....trying to find the right chem, the right clinical trial, the right doctors, the right plan of care....all I can feel is relief.  We never wanted Mark to be a prisoner to cancer.  There are a few new  people listed that were healthy when Mark died.  There are also those that continue to fight.  I cannot imagine how we all would have been able to continue the daily, intensive fight.

Mark did us all well stopping that madness.  I think about that more often than anything else.

A day, an hour, a minute doesn't go by when I am not thinking about our Mark.  Sometimes, it is just too hard to put into words.  Sometimes I feel that maybe we didn't do enough.  Would it have helped?

Then I remember, when I said to Mark after he told me "no more chemo, no more scans.  I want to go home, it's time".   I said that we all tried so hard, that I felt we had let him down, and that I couldn't imagine life without him.  I would miss him forever.  He said to me:

"Mom, it is no one's fault.  It just happened."

I wish it hadn't.

http://www.y98megawedding.com/default.asp 

It is probably a pretty good thing that Mark is not working at Golf Discount anymore, because if he were, I am sure he would be fired.

I know he would be spending a great deal of time campaigning for his friend and former roommate, Scott Pope.  Some of you may have received an email from me (or him) yesterday in a little contest that is going on.

Scott and his fiancee, Betsey, are in a contest on a local radio station here.  Y98 is holding a contest that will allow the winning couple to have a wedding put on by the radio station....leave it to Scott to come up with something as bizarre as this!  Mark would be all over it.

If you have ever had a friend that you would do anything for, please click on the link and vote for Scott and Betsey.  They are couple #3.  A vote can be cast every day.  I know that Scott did any and everything he could for Mark.  He so deserves to win this contest because he is such a great guy, and a very terrifc friend.

Also, ever since Mark quit being a hospital patient, Scott has had to buy his own coffee.

Please help us all make this happen for Scott.  Only he could win a wedding and make it seem like a normal, ordinary thing to do.