Ashley's Story

She will leave fingerprints all over your heart

8/01/2013

Its Because I don't Know How

I stand outside and paint.  I paint and paint and paint.  Prop after prop.  And... I cry.  I sob.  So hard that my shoulders shake and the tears fall from my eyes, down my cheeks, into my paint.

I shake my head at myself and wonder what I'm doing.  What am I doing?

I'm planning a party.  I'm celebrating her life.  8 years.  Its what I do.  Its all I know how to do.

And yet...my heart is broken and my eyes are swollen and I cry so hard as I work on this party.  I stand outside and I cry because there is no one else around and I can.  Periodically I tell God that I wanted her.  I wanted her so bad.  I remind Him that all I've ever done is love  her.  Through my tears I tell Him how much I want to keep her.  Then I cry so hard and I shake so much that I can't hold my paint brush steady anymore.

I'm planning this party because I don't know how to plan for her death.  Its that simple.  I know how to live.  I know how to take care of her.  I know how to celebrate her life.  Her beautiful, precious, amazing life.  I don't know how to plan for her to die, and yet I've known since July 31st, 2010 that my sweet Ashley Kate was going to die.  The very moment I gave them to her to take back and remove that precious transplanted organ I knew that my daughter was going to die.  I didn't know when and I still don't, but I've known.

I'm so afraid this birthday party will be her last.  They all tell me that it will.  I'm finally beginning to see that they are more than likely right.  I'm watching her body struggle more and more each day. I see the effects of her cellular structure falling apart.  I look at my baby and I see disease.  I see struggle.  I see it happening and I'm helpless to stop it from happening.  Can you even imagine being powerless to help your own child?  It is brutal.  It is paralyzing.  It is so, so painful.

I know in my heart that my family will probably never see or touch or talk to my sweet Ashley again.  My sisters, my brother,  my sister in laws, my brother in laws, my parents, my nieces and nephews.  This party...this celebration of her life...I'm so afraid this is going to be it.  They've spent her lifetime praying for her.  They've held me together from a distance because I can't stand to be touched, or consoled, or told that it will be alright.  So they respect that about me.  They stand on the sidelines of my life and they cheer me on. They pray me through.  They love me the only way I can allow them to love me at this time...by attending Ashley Kate's birthday party.  See...its the only bright spot, the only happy place, the only thing that is keeping me from losing my mind each day.  Its party planning...its celebrating life...its ignoring her death.

Today my sweet girl grabbed my hands and placed them on the side of her face.  I whispered to her some silly words.  "I love you baby dinosaur.  Your mommy loves you."  I knew thats what she wanted to hear.  Its our thing.  I don't know why.  It sounds so stupid, but my baby girl loved dinosaurs at one point in her life and its a leftover piece of her and I from that period.

I watched from across the room as Blake passed by, paused and said, "High five, girl."  Then I saw my sick baby reach out her tiny hand and give him the tiniest, softest, sweetest  high five.  Its their thing.  Something they've always done.

  Ash slept on the couch yesterday and I was sitting across the room from her staring at her.  Taking every inch of her in.  Allie came and sat on my lap and the tears slipped from my eyes.  She said these words to me, "She's still beautiful mom.  She is."  Only Al would know to say those words to me.  Only my girl would understand how very  hard it is for me to see the beauty of our Ashley Kate disappearing.

I pray God has more time left for us.  I beg that He gives to her more happy days, more fun days, more days to laugh, to smile, to live.  Its been such a miserable week.  Truly miserable and my heart is breaking apart.

The Wizard of OZ?  Why this theme?  I've been asked several times if Ashley Kate loves this movie?  No.  She doesn't.  Its something more than that.  Ashley Kate loves home.  She has taught me to love home.  Simply put...There is no place like home...so...the Wizard of Oz...this is why.

3 days till she turns 8.  9 more days until we celebrate.  Its because I don't know how to do anything other than this right now.

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