Celebrate 60?

I always wonder about others, Is your glass half full or half empty?  I hate to admit it but I'm for sure a half empty type of gal.  I was thinking about this after I had a conversation with a friend last night.  When I think back at what I said I realized how negative I sounded!  We were talking about Mark (of course) and his progress.  He was saying how great Mark looked, and how positive he seems.  Then we started to chat about the wait...and the phone call.  I said "Mark has been listed for 59 days, tomorrow will be 60."  Then I mentioned so crap under my breath, "Not that I'm counting!"  Who I'm I kidding...I am counting by the minute.  Then I started to complain about how long it's been and how this all needs to end...blah, blah, blah.  We had talked about when Mark was listed they said the wait could be up to 100 days.  I'm feeling at this point will surpass that milestone.  I thought we would only wait about a month or so!  While this conversation was going on He just looked at me and said "You guys are so close, only about a month left, it could happen anytime now."  He is right.  Yes Mister half full...you are right!  I thought about this last night...I am seriously such a Debbie Downer.  I think I have come to terms with being a half empty girl.  I remember as a child playing with friends and cousins, and asking that same question to each other.  I also remember my answer..it was always half empty.  This is something I need to change...NOW!  So thanks to my friend I have realized I need to try to be positive.  So today I will celebrate 60 days.  We have come so far and will not have to wait much longer!  With hopes that my glass will be half full one day!

On a side note while I was writing this I looked at Mark and said...."Is your glass half full or half empty?"  With a big grin on his face he looked at me and said...."Half full!"

Growing Old

Sometimes I struggle as a parent.  I often think to myself would it be easier if Mark wasn't who he is?  On other days I think that things are a breeze with him...and thank god things are the way they are.  Mark has an innocents that is truly amazing.  He talks about Santa almost daily.  He loves the change of every season, and the excitement that comes with it!  For most New Englanders that last only the first couple days of the new season...but not for Mark.  It could be the 100th snow storm, and it's just as exciting as the first one!  


Like every parent I find myself questioning everything I do when it comes to my child.  Who ever knew it could be so hard?  As a parent you provide everything for your child until they become an adult.  Could you ever imagine what you would do if they didn't grow up?  If you asked me that when I was holding my newborn...I would have said " Are you kidding me..that doesn't happen!"  Well it does, and we are living it in our house everyday.  Mark was diagnosed well after birth..so for a long time we were blinded and had no idea what road we were going to travel down.  Here we are 12 years later.  Yes 12...We will have a teenager in our house next year!  A teen that still loves Barney and PBS with all of his heart.  At times I'm so grateful that we won't have the worries of when he's grown up and is out on his own.  Other times I feel angry and sad.  I want Mark to have friends and girlfriends..I want him to drive and be independent.  I just don't see that happening.  He has come such a long way...further then any doctor had thought.  As he gets older I have come to terms with what his adult life may be like.  It will be amazing for him...I know he will always be happy, and we will always have joy in our home.  I know we are not the only family that is going through this..but sometimes it sure does feel like it.  I have these thoughts often daily:  What happens when Chris and I get old?  Who will be there for Mark?  Who will know all the little things about him like we do?  
Whenever I leave him now, I have the same feeling I did when he was an infant.  That will never go away.  
I guess this all stems from realizing were growing old and evolving as a family.  We are different as a family unit then we were 5 years ago...for the better I'm sure.  It also doesn't help that I fear growing old.  If I could stay young forever I would!  So maybe that's it..Mark doesn't have such a bad gig...I shouldn't feel guilty.  He will be forever young :)

9 Months

Well It's been 9 months....That is almost a year!  I have to say the time has gone by so fast, but so slow at the same time.  We are ready, ready to be done.  I'm sure that I'm on repeat mode at this point...But its getting old!  
Mark has been listed for 53 days now.  The doctors had said it could be up to 100 days.  The good news is it's just coming sooner day by day.  I just never thought we would wait this long!  About 2 weeks ago the doctor had told me he anticipates Mark going into transplant in the near future.  Of course I ran home packed everything, cleaned my house from top to bottom.  I was sure it was going to happen that weekend...not so much.  His definition of near future and mine are a bit different.
Other then waiting we have not been up to much.  Working, school, hospital and home.  That is our story right now.  Pretty boring, which leaves nothing to blog about!  I do get more and more anxiety as the days pass.  Transplant will be exciting, we will finally begin our long road to recovery.  It will feel nice to have a different schedule.  I also fear the long winter I will have home with Mark being cooped up in the house.  If I survive this recovery I can do anything :)

September 11

First Pat's game of the season!

Brushing up on his presidential knowledge.

Mark's Art Show

Hanging with Celeb's....Just another day for Mark :