WHAT REALLY MATTERS

As I lay here  with my 10 yo son, Scotty (who has Angelman Syndrome)  as he sleeps with a leg on my stomach and his hands on my head...he just can't get close enough tonight.  I am unable to sleep.  Angel parents are used to sleepless nights for so many reasons:  our angels like to have "parties" through out the late hours/they tend to have an increase in seizure activity at night/or they just won't go to sleep 'cuz that is the fun of being an Angel.  Scotty used to sleep in his own bed for the past 9 1/2 years, however for several months he has had anxiety and needs to sleep next to me (on top of me is more like it).

Some nights I complain, some nights I wish he would go back to his own bed, but tonight, I am thankful he is next to me.  It is a reminder of what really matters in my life.

He matters, his happiness matters, his health matters, each breath he takes matters.  My heart is heavy once again because another Angel, Kelce, has been put into a medically induced coma to stop her seizures. due to complications and infections, her devoted family has made the heart wrenching decision to no longer have her on life support.  This is an incomprehensible task that many Angel families have faced through the years.  It is a moment that each of Angel parents dread, fear, and worry about.

I have never met Kelce, but I have grown to love her as my own because this Angel community of ours has the unique way of loving and giving of ourselves like no other.  We understand each other.  We don't need to meet in person to love one another.  We have facebook, email, text, notes, and phones to connect with one another.  Sometimes, words don't even need to be spoken.  We just know we are loved and our Angels are loved.

I have always been a person who prayed.  However, I have never prayed so much in my life as I have the past few years since I. became a member of this incredible family of Angels and their parents.  

When an Angel passes to earn their heavenly wings, a piece of every Angel parent's heart goes with them.  I lay here  with such a heavy heart that I cannot breathe.  I pray for a miracle tomorrow for Kelce.  I pray that no matter what happens, that Erin MacEachern Hazelton and Janet Santos MacEachern and their family know that they are not alone.  I pray that they receive supernatural strength and courage to get through this.  I pray that they feel all of our love surrounding them and Kelce.

So what really matters is not if my son sleeps in his own bed, is ever potty trained, or if he pulls my hair, what matters is that he is here next to me, sleeping, breathing, and healthy...for now.