Ashley's Story

She will leave fingerprints all over your heart


If Only Loving Her...

...were enough.

Enough to protect.

Enough to heal.

Enough to save.

Enough to spare.

If only loving her were enough to make it all right in our world then I assure you she would be the safest, healthiest, most protected, and treasured child in this world.  We love her that much.  We love her so very much and yet its not enough to make this go away.  Not enough to keep this horror away from her.  Not enough to protect her from the broken body she was born with and the burden she's been asked to carry.  Loving her is not enough.  Its simply not enough.

I cry.  Every day.  I cry my eyes out.  My heart cries out.  When I find myself in a room all alone... a car alone..a moment alone....I cry.  The tears never run dry. I feel as though I'll never stop.

If the day comes that my sweet Ash doesn't have another breath to breathe then I don't want to take another breath either.  If she doesn't wake then I don't want to either.  If she isn't living then I don't want to be alive.  I know it sounds crazy.  I know many of you will say how wrong or how selfish or how whatever I am, but I'm being honest.  A life without Ashley Kate in it is not my life.  She is my life.  She is what I do.  She is what I know.  I don't know how to be me anymore if she's not with me.  A thousand thoughts run through my mind over and over again and they all make me feel as though I'm going insane.  This can't be our life.  It can't be happening to our baby.  Not Ashley Kate.

Today someone asked me" how we were coping with her dying".  Seriously?  I wanted to scream.  I wanted to snap.  I wanted to do something, anything, to make them take back their words.  How are we coping?  I don't have an answer for that.  "How are your older children accepting this situation?"  "Are you talking about her death?"  "Do you have discussions?"  "Have you and your husband acknowledged and accepted that Ashley is going to die?"  STOP! Just STOP!  How do you think we are doing?

Allie had a volleyball game two hours away this week...I didn't go.  I sent her without a parent...without a person in the stands...without anyone to pull for be on her side...her fragile heart was sent alone.  I was dying inside.  Torn between my girls.  I went to her game this morning.  It was an hour from home.  I left Ash home.  After a miserable, horrible, night and an equally miserable morning I walked out the front door and went to watch a volleyball game.  I was dying inside.  Torn between my girls.  I don't know how to be who I'm supposed to be anymore.  I don't know how to parent all of my children through this miserable situation.

Its Blake's senior year.  Its supposed to an amazing, unforgettable experience.  I fear it will be over shadowed by the most awful experience of his life.  I fear his baby sister will lose her battle and he will forever remember this year as the year we lost her.  Everything in me is crying out to spare them this pain, this burden, this nightmare.  All 3 of them.  I want to protect and keep them from all of this.

I want to be present and involved and excited about the school year and volleyball games, and cheering, and his last basketball season ever, and then soccer and baseball, prom and graduation.  I want to be their mom this year, and yet I'm a broken mess, doing everything I can do to hold myself together day after day and force myself to get up each day and do what I have to do.

If only loving her was enough to keep her from suffering...from struggling...from losing her battle.  We are desperate for the brief glimpses of who she is to come through.  Every once in a while we catch a tiny grin, a dim sparkle in her eyes, a moment of our sweet Ash that comes battling her way through the struggle.  Its those moments that we grasp on to with all that we are.  We are so grateful for those moments.  So very grateful.

I covet your prayers.  Mine seem so empty.  My heart is spent.  My words fail.  I wish I could love her so much that none of this would ever happen to her, to Dave, or Blake, or Allie.  I wish it were enough.


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