ONE YEAR

I remember the day Ryan was born.
I remember how he struggled to take his first breath.
I remember hearing his voice for the first time.
A little over three years later, I watched him struggle to breathe once more.
I saw machines breathe for him.
I grieved the loss of his voice.
I watched him hang on to life.

Last year
I could not imagine a single tomorrow.
I was trapped in a moment,
an instant of fear, worry, and grief
that lasted an infinity.
Any hopes, dreams, worries or fears I once had
meant nothing from that moment on.
There was only one thing that mattered,
only one thing that infiltrated my every thought.
It didn't exist in the past 
and did not allow me to imagine a future,
not a single minute past the one I was living in at that moment in time.
But each moment passed,
each minute expired,
each hour gone,
and every day moved on.


A year has passed.
In a year I have seen life drain before my eyes 
And I have seen it restored
In a year I have witnessed a body deteriorate 
And I have seen it grow
In a year I have been lost
And I have been found
In a year I have experienced profound sadness
And have embraced joy
In a year I have forgotten all that I know
And I have learned so much
In a year I have worried
And I have renewed confidence
In a year I have lost hopes and dreams
And I have gained new direction
In a year I have wanted nothing more
And I have gotten everything
In a year I have watched my baby grow into a little boy.

Today I celebrate the life of my child.
I am overwhelmed with emotion.
Joy, Elation, Hope, Worry, Fear
A loss for words
Swallowed up by the emotion 
a knot in my throat
Tears flow freely
followed by joyous waves of laughter
that wash over my heart
I grieve for what our lives were
and celebrate the life that is now.


Today he keeps talking about when he turns five, 
just weeks after his fourth birthday.
He circled toys in an ad for Santa to bring him.
He told me he wants to go back to the beach.
He has hopes and dreams for a future.
And now, so do I.

disappearing me

I spent so much time working on "who I am", defining my existence, making a niche for myself in this world.  It was important to me.  It was a driving force behind all of my decisions.  I wanted to stand out, be unique, an individual, a rare example.  It turns out that none of it mattered.  I was selfish and didn't know it.  I know it now.

Not everything changed once I got pregnant.  That's when it started, but I was still over confident.  I thought I had it all figured out.  I could continue working full time.  We could live comfortably in this cute little house I bought.  We would be healthy and happy and want for nothing.

When I first held him in my arms I became a mama bear.  Nothing mattered except him.  For the first time ever, I was focused on someone other than myself.  The intensity of this feeling overwhelmed me.  The sight of him had me grinning uncontrollably.  I cried tears of joy at the very thought of him.  I forgot all about my needs, desires, and comfort and spent up every ounce of energy into giving myself completely to this tiny ball of life that I created.

Suddenly who I was, and who I used to be no longer mattered.  The only thing that matters is who I am now.  My children do not know or even care about who I was.  They only know me for who I am now.  I try to be the best mom I can be for them.  I try really hard and some days I feel like I failed them.  Other days I don't try at all and I feel successful.  I do it all for them.  I am focused on them instead of myself.  I let the old me waste away.  She's no longer important.  Her dreams have faded and instead have been replaced by the new hopes and dreams of what I want for my children.  I want them to be happy, healthy, and good.

When you have a critically ill child, this feeling intensifies a hundred-fold.  Nothing else matters but him.  It is hard to even think about simple things like eating, sleeping, & hygiene.  There are a zillion other things to worry about and stay focused on.  And time is precious.  Why waste time doing stupid, non essential things when you don't know how much time you really have.  It is frustrating.   

I define myself now by my children.  Who they are, is what I am.  I am nothing without them.  The thought of losing him... it would be like losing myself.  Who am I without him?  I would be nothing.  I am scared.