There’s no word for it.

A few brave souls have asked me what it’s like being afraid of losing Evan.

I say it’s paralyzing.  The fear is so great that sometimes I can’t breathe or even function.

I’m taught to watch for symptoms of heart failure which could mean his heart isn’t working anymore.

I’m taught to look for a dry cough, vomiting, unusual weight gain or loss, fussiness, lethargy, breathing changes.

He’s a baby.  He can’t communicate to me what’s going on inside his little body.

So, every time he coughs, every time he spits up, every fussy night…I fear and wonder that he’s in heart failure.

That fear….albeit a cold, hard reality of my life…is still just a fear.

It has yet to manifest itself in my life…and I pray so hard everyday that it doesn’t. I pray that I get many years with him and see Evan grow old with his own family.

What happens, though, when that fear finally does become a reality.

It happened.

It happened to 20, unsuspecting parents, who made breakfast for the littles last Friday, who may have argued about what to wear, who may have had to ask a bazillion times to “Turn off the T.V. and brush your teeth!” that morning, who may have had the soundtrack of  babble of their 6 year old talking about a super hero or a princess on their way to school at Sandy Hook Elementary in Newtown, CT.

They kissed their little ones goodbye – for the last time – hugged their tiny bodies – for the last time – told them they loved them – for the last time.

Death of a child is so taboo, so incomprehensible…there isn’t even a word for it.

Widow – one who loses a spouse.

Orphan – one who loses a parent.

My fears for my son’s sick heart force me to live everyday like it’s his last, because, unfortunately, no matter how well he may be doing one day, his condition can turn on a dime.  And I could be living in my greatest fear.

But, what about the healthy little ones in my life  – our lives.

My Iz.  A year from being a kindergartner like those who perished.

I look at her and see nothing but life.  Nothing but joy.  Nothing but hope.

My fears of death are lost on her…because she isn’t dancing with it like Evan.

Or is she?

The sad, scary reality that this tragedy has brought to light is that death doesn’t discriminate.  It doesn’t pick just pick the sick, it doesn’t just pick the ones with heart problems, it doesn’t pick the old.

It just chooses who it wants….and Death takes them.

I held my best girl tight all day long on Friday.  Every few minutes I’d hold her, squeeze her, tell her I loved her.  I told her how special she was to me and her Daddy.  I told her that she is the best big sister in the world.

I’ve been so focused and so scared on losing my sick boy, rightfully so, that I didn’t truly cherish my healthy girl like I should.

Twenty families are mourning today…and will mourn everyday for the rest of their lives.  Twenty families who lost little laughter, who lost good morning kisses, who lost bedtime stories….they are cherishing the memories.

I ache as a parent for each of them.  I cry every time I see my Christmas tree and stockings hung.  I cry every time I hear Iz’s little voice sing.  I cry every time I look around and see a mess of a house…knowing they just wish they could have these things once again.

There has been so much talk of gun control, putting God back in our schools, having the “conversation” that needs to happen to stop these senseless killings.

I agree….let’s talk about these things.  Like our President said last night, “We have to do better.”

But, perhaps let’s take a moment and learn from these families mourning their unspeakable loss.  Learn from their heartache. Learn from their grief.

To cherish each day with our families.  To stop living in fear and living for today.

Because, I bet they will tell you, to make each moment count.

Because you’ll never know when that moment will be taken from you.

I ask for each of you reading today’s blog to stop and pray – to whatever deity you serve – for peace for the families of the children and adults that were lost on Friday and for those heroes who are now survivors….but living with the images of death they saw and witnessed.  I ask that you remember the faces and the names of those lost and  not the one took them.

I ask that you hug your families tight.  I ask that you tell each other you love one another.

Most of all….I ask that you live each day to the fullest..never taking for granted another moment.