Happy 12th Birthday Mark!

It's hard to believe Mark is 12 today!  Time has gone by so quick.  I remember the day Mark was born like it was yesterday...I also remember the day Mark was diagnosed like it was yesterday as well!  Both were life changing days.  Of course the newest to the list is the day Mark's kidneys failed.  All of these events have been life changing for me...and boy have I learned a thing or two!
The day Mark was born I learned a love that is indescribable.  I remember my tears and just holding him and looking at him...it was an instant bond.  I wanted to give him the world...at the moment nothing else mattered to me.

Mark..3 days old

  Weeks after having Mark I knew something was not right.  With many trips to the doctors I was not getting the answer I was looking for.  Finally we ended up with a chance meeting at Children's Hospital Boston with Dr. Irons.  She had happen to diagnosis, and work with a couple families that have children with Wolf-Hirschhorn Syndrome (4p-).  Before I knew it the test results were back.  We had a family meeting to discuss the results.  When they told me Mark's diagnosis at the moment I was fine..no worries at all.  Then they started to talk more and more about the risk, and all the medical teams Mark would need to see.  At this point they were being proactive to try to see where Mark was exactly.  After many weeks of day after day trips to CHB...it hit me...my baby would not have the "typical life" that most kids have.  Around this point in time the doctors were expecting a life expectancy of 5 years.  There just wasn't enough information on 4p-.  I think back now on how devastating this was to me a young mom.

After his first surgery at 11 months old...loving his Papa.

  I was hurting so bad, but was determined to stay strong for Mark.  I had my bouts of depression and feeling so sad for Mark...then it hit me..why be sad Mark was the happiest baby around.  I think around that time was when I learned to embrace this journey.

Happy 1st Birthday!

Mark has taught me more then I can tell.  I have gained many great people in my life due to Mark.  Today I think about now and what I have learned from the past.  I'm a mother, an advocate, honorary nurse, and a friend to Mark.  Would I change that...NO!
I have an idea of what the future holds for Mark.  I will see to it that he goes as far as he can.  I also carry a lot of fear for the future...I don't want to age...Mark needs me and always will.  I find myself constantly protecting him.  From his laziness at home...I will just do it for him (yes I am a push over)....to kids looking at him or treating him differently.  I just want to be here forever..holding his hand.  I use to be shy about my life and who Mark is.  Now if I could scream it from the roof top I would.  I just want to share and educate.  We don't have a "normal" life all the time...but we try.  
Meet Mark...Love him and become one of his "people".  He rarely forgets people he meets...he is a lover.  That alone is the thing about Mark that makes all the hard days disappear.
Happy 12th Birthday Mark....I Love You more then you will ever know.

Visit to the Kidney Doctors at the age of 16 months

First Bike Ride July 2000

Mark and Mom