Desperate

We are desperate.

Desperate to find her.

Desperate to see her smile...to hear her laughter spill out...her joy reappear...her eyes twinkle. I fear it is lost to us forever.

We are desperate to change our circumstance...to help our beautiful girl.

I am desperate.

Desperate to spare her the suffering...

Desperate to heal her daddy's breaking heart...

Desperate to protect her big brother from watching the pain she endures...

Desperate to restore the light hearted, silly, fun personality that this has stolen from her big sister.

My heart feels such desperation tonight.  Our home is silent.  The joy is absent.  It is so very different than what we all know.

Our hearts are hurting and our spirits are broken and our baby is struggling.  Despite the comfort we try to give, despite the morphine, despite all efforts to ease the struggle of her broken body.

Please tell me how the world continues to spin, and why life goes on, and the sun still rises and sets, when our walls are crumbling?  We don't know how to do this.  We are lost.  We are broken.  We are desperate.

In the quiet moments when she finds rest, I sit near her bed, and search for the pieces of her that remain the same...the smell of her hair...the curl of her lashes...the tiny nails on her fingers...the tip of her nose...these are the things that remind me she's still my baby...she's still her...she's still Ash...and Oh how I love her.

The prayer requests are many.

Her ears.  Her mouth.  There is a horrible ulcer inside her bottom lip that is causing her so much pain. Her swelling.  Her weight is up 12lbs from fluid and moving her is so, so difficult.  Breathing is so hard for her.  The lasix isn't helping.  The left side of her body is swollen, almost tripled the size of her right side.  Her neck, shoulder, breast, abdomen, thigh, knee, ankle, and foot.  Its miserable.  The skin is stretched so tight it is glossy and red.  Her spleen.  It is an enormous source of pain for her.  The size of it is massive.  She is uncomfortable.  Her itching.  She currently has 14 self inflicted wounds on her skin.  Two of them are grossly infected.  She claws at her skin all through the night and when I check her she is covered in blood from scratching so deep.  The meds help a little bit, but not enough.  Its a huge battle trying to keep her safe from herself.  There are many, many more requests, but your prayers for any of these would be so appreciated.

I do take comfort in knowing that she is feeling safe here in her home.  I see it in her eyes.  She knows she is home.  We currently have three beds for her.  One in our room next to our bed.  One in her own bedroom.  One in the play room under her apple tree.  She requests when she wants to be moved from place to place.  We spend most nights in our room then move to the play room bed for the daytime.  It is cheery, and happy, and filled with beautiful things.  The sunlight shines through the windows.  She occasionally naps in her own bedroom.  She finds comfort being in there mainly because I think she knows it is her own space.  Dave is searching for a hospital bed for her which would make it easier to move her up and down and change her positions as she sleeps.  The threat of pneumonia is huge and we are working to keep her free of it.

We still spend three to four hours a day driving around town.  Its one of her few requests and I can't deny her the freedom of it.  Moving her in and out of the car has become very, very difficult and I can no longer do it alone.  Most of our drives take place after Dave has come home from the office and of course on the weekends.  


Every day we wake up desperately hoping for improvement.  Even in the smallest amounts to allow us to continue to find hope.  We love on her.  Kiss her a hundred times a day.  Lay next to her.  Sing to her.  Pray over her and search for any way in which we can make her feel more comfortable.

 She is loved so deeply.

 Wanted so desperately.

Thank you for continuing with us.  For your presence in this place.  For your love, concern, and kindness.  Thank you so very much.