Zachary James

Zachary James

Monday, March 14, 2011

What Spots?

You know how you always hear, "it's not what you say...it's how you say it"?  Well, I don't know that that phrase applies in my life right now...  After almost a year of living with a funky, rare disorder that I can barely pronounce...I still haven't come up with a way to answer the million-dollar question "why does he have those spots?" or "what is wrong with him".  Usually these questions come from children because, let's face it, they are the only souls brave enough to ask.  I even had one little girl ask me why he had so many spots and then report it to her mother a moment later as if the mother was the one who really wanted to know.  I had to laugh because after the little girl asked, Zoie said "it's his congenital nevus."  That's it...just that simple...she may as well have said, "my brother has two eyes".
I guess maybe I am over thinking it.  I want to properly explain it so that people are educated.  I don't want to use the words birth defect, disorder or Congenital Melanocytic Nevus.  I can barely even say Melanocytic Nevus and when I do...the deadpan look I get is almost comical.  So...I hesitate.  I stammer and struggle with my words.  I don't know...maybe..."it's a rare skin condition"..."they were having dalmatian awareness week in heaven when he was born"...."what spots?"...  Maybe its because when I look at him I don't even see spots.
When Zac was born, he had a few satellites, but over the past year, satellites seem to have exploded all over his legs.  He looks like he's been splattered with coffee.  Now that summer is here and he is a shorts-wearing little dude, everyone seems to be asking.  Why am I so unprepared to answer what should be a very easy question.  It's a tough situation when you want to act like it's nothing  - he is a healthy, happy little boy and I refuse to give anyone the impression that he is not...yet it is obvious something is different.  And seriously folks...he has 500cc of saline in his side and all you can focus on are some measly little spots!!  I guess I will just have to let my four-year old answer from now on.
1 Month
8 months

2 comments:

  1. Hey there Amie!

    I'm awarding you the Stylish Blogger Award!!! Check in on your blog all the time! If you want to accept the award and forward it on to another blogger, visit me and grab it!!

    :)
    Marcy @ Life's Gristle

    ReplyDelete