April 1 -

I realize that we are in a desperate need for an update.  Last update was brutal being that it was the beginning of the home stretch for Ivey following this last surgery.  To say the least this has been one of the most difficult times with Ivey.  For Ivey it is the healing, for her momma, its the continual schedule of nothingness and not being able to help my girl to not hurt.  Despite my frugal efforts, I am deemed useless.

This procedure has been topped with pain.  She has her good days, but now she cries without warning.  She cries.  She has NEVER been someone to cry.  I try to comfort, but I do not know how to help.  There have been many days that were good, a couple, great, but all outlined with being uncomfortable.

My girl looks different.  I still haven't wrapped my mind around the new look.  And soon, this look will change.  The distractors will come out and a newer look will emerge.  No matter how hard I try, I am not excited about the "new" look.  I miss her face.  The one I have know for many years.  The one I fell in love with when she was just a baby.  There is no way to put into words the longing to see her the way I know her.  Now we are in the hallway (in-between) waiting on yet another new look.  And as a wise friend once said, "It's Hell in the hallway."

From a parental standpoint, the mental rigor that requires coping and resilience on my spirit, this is the hardest, and there have been some hard days.

I am accustomed to Ivey having a beauty that is sometimes overlooked.  A beauty that takes heart to see.  Not the typical beauty.  I know what to say when others don't.  I know how to ignore.  I know how to throw it right back too.  But mostly I know how to protect her.  I know how to take a stare and turn it into words that she hears - she is beautiful.  I know how to take a poorly worded question and make it right.  I know what to say to children when they ask "why" she looks different.  My girl is beautiful.  Right now, I am stumbling with the new questions and looks.  Why does that feel like I am doing something that is wrong - this time I can't be the one to set it right for the masses.  Not yet.  I don't even know how to set this right in my own heart.  My heart is hurting.  I just want to shield her.  Protect her from something I cannot even pinpoint.  I don't even know what she needs protecting from.  If she could just tell me.  She is tougher than I am.  But I think she got some of her grit and stubbornness from me -

And the pain it is breaking me.  I have a twitch in my eye that has been there for weeks.  I am certain is my body's response to worrying about her pain and the accumulation of sleep deprivation.  Stress.  She can't tell me.  No matter how hard she tries, we don't have the signs for this.  I am not even sure she understands what has happened and I know she doesn't know why this is happening.  I trouble shoot, but am left fumbling not helping her.  I have prayed through this one countless times to please let her speak, let me hear her voice for this once, so she can tell me.  I want to hear her.  I need to know what to do.  Mommas are supposed to help.  Kiss your babies and be thankful you can hear their voice.  The sweet sound of chatter.   Selfishly, we are on lock down. It's lonely.  We play her favorite games. I read her favorite books.  But I long to talk with her during this sacred time we have together.

These idle days give way to too much time to ponder all of this.  Sometimes I have to try to prepare my own heart and how to guard it - before I am much good for Ivey, a husband and sons.  This has been a time of great highs and quickly dropping lows.  It's that blamed roller coaster that we have been on for so long, but this time its been a little to much excitement and dullness, too many extremes.

I have wonderful friends and family.  Being on lock down only amplifies the hard.  I know this.  This too will pass.  Soon she will go back to have the distractors removed.  And then, hopefully, this is just another milestone that we have survived - together - as a family - with amazing friends for support.
Soon.  The distractors will come out and we will set our sights on one awesome 9th birthday for our girl.