10 Months

There is one good thing about all of this waiting...We have had the opportunity to not miss out on much this Fall!  My fear...spending another Christmas at Children's.  We were told he could be listed up to 100 days.  100 days will be on November 9th....That is close to the start of the holidays.
Tonight we will celebrate 10 months at the Franco in Westford.  A family friend is hosting a fundraiser for Mark.  Mark just keeps on saying he is so excited to dance the night away!  It will be a nice distraction to see people and have a good time.
Let's just hope I will be blogging about transplant when we hit 11 months.  Please keep your fingers crossed!

Field Trip Day earlier this week!

Thinking About Christmas

Yes I said it...Thinking about Christmas.  There are lots of reasons why this wonderful holiday is crossing my mind.  I know.... Can we get past Halloween and Thanksgiving first?  This all stems from the dreaded Endocrinology appointment and the "Toy book".  First the toy book (as Mark likes to call it).  Mark came off the bus with a toy catalog from the bus driver.  He wouldn't stop looking at this magazine.  He kept on saying "Can I have this from Santa?"  So I gave him a pen and told him to start circling.  He did..happily!  I thought the entire book would be circled when he finished, but to my surprise it wasn't to bad.  His prize possession out of all the toys in the book...The Tea cart.  Yes The Tea Cart.  I wish I could find the book so I could take a picture of it, but I bet Mark is sleeping with it at the moment!  It is a red cart that comes with tea cups, a tea/coffee pot, dishes..ect.  He thinks it will be fantastic to be able to serve his Mom and Dad tea and coffee on Christmas morning...and many days to come!  The book came home almost 2 weeks ago and the Tea Cart is still the favorite!
Moving on to the appointment.  I was dragging my feet not wanting to go to this appointment last week.  The Renal doctor had suggested we go to the Endocrinologist just as a check in due to his labs being off.  When we arrived the first thing the doctor said to me was "Why are you here? The doctor that sent you did not send a referring note".  At that moment I wanted to scream!!!  So I explained to her the highs and lows in his lab results.  She looked at me and said "Well maybe if he had a kidney that worked this wouldn't be a problem".  At that moment I wanted to high-five her.  I controlled my self...I thought it my be a little wrong...but I was happy to hear that was her solution!  These levels we are looking at have always been a challenge for him, so it's no surprise to me that we would see bigger spikes in drops with his current state.  Moving on with the appointment she brought up another subject...Puberty.  I wanted to crawl under my chair..I know childish...I'm a mother I can had this!  As I stare at my innocent sweet little boy that really only wants a Tea Cart for Christmas, I'm not grasping the conversation.  Needless to say I will spare you the details, but the process has begun.  It just seems weird that Santa will bring a Tea Cart this year and replace the bubbles in the stocking with deodorant.  God who knew parenting could be so rough!

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 :)