A Letter to my Son

Dearest Lil Man

Where do I begin this letter.  Do I begin with today, you are a HANDSOME little 17 month old boy I dressed in 3-6 month onsie and pants. Your a little small compared to others, but hey thats not a bad thing :D
Your Charasmatic to say the least, EVERYONE loves you, and cant stop saying just how handsome, funny, smart and awesome you truly are.

You make me smile when you are silly, warm my heart when you give me kisses, make me feel so proud when I see you do something for the first time.

I loved seeing you walk, your first words and everything in between. You are the light of my life, and I love you so much it sometimes scares me.

I am scared about many things, as your not aware of as of yet, and I struggle with how we will tell you, you have a special heart.

Your heart is “bigger” Than other kids your age, and sadly not in the good way-

Your not on any medications at this second, but we are thinking that will change.

At any moment you could go into Sudden Cardiac Arrest- and you could show no symptoms before that happens.  Your heart has muscle issues, electrical issues, pumping issues and wiring issues.  But you are so strong, I know you will over come this some how.

We will deal with this disease for ever, along with your genetic disorder- LEOPARD Syndrome ( Yes i know they have technically changed the name of that, but hey i dont mind LEOPARD, plus it reminds me of what can be affected by this change")

You and your Dad are my LEOPARDS and I wouldnt change that for the world.

I fear the day you ask me about when you were born. I want to tell you the story with out crying, with out fear, with out tears.  But I know your going to be an awesome understanding lil Virgo and will most likely wipe my tears away.

 

We cant wait to spend forever with you and keep watching you grow.

 

I love you Soyyer!!!

 

Mommy xoxox