When the Words Won't Come

I'm having a very hard time finding words to share.  There are a thousand thoughts that run through my head daily and yet I can't seem to formulate a clear sentence.

We made it to New York two days ago.  I had 1600 miles to think.  When my teenagers fell asleep... I cried...and drove... and prayed... A lot.

Ash had four really amazing days from Thursday to Sunday.  She laughed and played.  The reports I was getting from Dave and my Mom were that she looked as though she felt better than she had in months.  I could hear her laughter in the background during our phone calls.  Dave sent pictures and video clips so I could get a visual of her smile and hear her giggles.  She's been so happy.  I began to allow myself to relax a little and gave myself a reprieve from the crushing feeling that had been bearing down on me for the last week.

How deceptive.

This morning Ash woke not feeling well.  She was very grumpy and a little bit "mean".  She was emotional and indecisive.  Her labs came back not looking good.  She's sitting borderline for needing blood.  Its already been ordered.  She's been type and crossed.  She will more than likely be receiving it in the next few days.

  She's a little better this evening.  I even talked to her on face time and saw that precious girl of ours smile.  She's swollen, bruised, and yellowed, but she smiles.

She's still broken.  Unable to be fixed.  She's not going to be ok.  She's not ever going to be ok again.

Still I can't help hoping.  Wishing.  Praying.  Dreaming.  I wan't her to be ok.

I could share a hundred different medical issues with you. I could talk about her labs.  I could talk about her color.  I could talk about her bruising.  I could talk about her bleeding.  I could talk about her blood counts. I could talk about psuedomonas.  I could talk about her line.   I could go on and on and on, but I won't.  The details scare me.  They make me lay awake at night.  They cause me to be afraid.  They make me cry.

Despite it all, the ONLY thing I care about is Ashley Kate's happiness.  At this moment Dave and Nan are driving with her.  She's happy to be in the car.  She went to go see her "rooster".  She's happy.  Nothing else matters.  If we spend the next 6 months driving at all hours of the night there will not be a minute of it I regret.  Its what brings her joy.  We can't give her life, but we can give her moments in her life that bring a smile to her face.

I'm doing my very best to not be an emotional mess this week.  Do you have any idea how hard it is to keep smiling on the outside when your heart is breaking?  I'm so conflicted. My teenagers help me to laugh.  They are so fun.  My baby's smile and giggle bring me joy.  My heart is hurting.  Being a mom is hard.  Waking up every day is getting harder and harder.  I want the world to stop.  Time to stand still.  Nothing to change.  I'm praying for birthdays, and Christmas', and memories, and miracles.  I don't know what else to do.  I just don't know what to do.