Blue Straps and Black Markers

We are beyond weary.  Exhausted and grieving for one little boy who learned yesterday that sometimes promises kept doesn't mean joy unspeakable.

We traveled to Philly yesterday for Round 10 of Aaron's casting process.  It was supposed to be a joyous occasion as Aaron has finally finished the weekly treks up to Philly for new casts.  His feet are flat.  He was getting braces.  No more casts.  Over and over he chanted these beautiful words.  No casts... nope... no casts.  Braces.... no casts.  He didn't sleep on the way up despite dragging him out of bed at 1:30 am.  We tried but he was too excited and happy to be riding in the "Big Van" with Daddy and Mommy to get those casts off his feet.

We had a wonderful Reece's Rainbow reunion with a bunch of Reece's Rainbow families and more kids than you could imagine piled into the waiting room on the 4th floor of the Shriner's hospital.  What fun to look among the chaos and noise and see all the rescued treasures interacting and playing together.  Oh we had a blast trying to gather all those wandering children into one active pile to get pictures.  NINE of the children pictured below are Reece's Rainbow children.  ELEVEN of the children in the picture are adopted.  Seven of the children have Arthrogryposis.  Wow!   Shriner's Hospital doesn't know what hit them!!

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When Aaron first got his new braces he was happy.  They sport rockets and spaceships and fit nicely onto his feet. 

Then Dr. Van Bosse entered the room.

He pulled a black permanent marker out of his pocket and the happy experiences of the day vanished in the wind.

Four blue straps on each brace.  He placed the first strap on at the top of the brace and wrote a number 2 on that strap.  No issues from Aaron.  All it does is hold the brace in place.  Then he put the second strap on.  The number 1 strap.  The one that crosses his ankle.  The one that holds the foot firmly into its flat position.  He put that strap on and he tightened it.  To the fullest extent.  Aaron gasped and tears began to pour down his face.  Then Dr. Van Bosse marked the strap with his marker.  THIS is where this strap goes.  THIS is where you MUST keep this strap.  It should NOT be loosened.

He wasn't done.  Straps number 3 and 4 were then placed.. on each side of the brace... these straps pull the feet up... stretching them... just as if he had on casts.  He cinched those straps... to the tightest position.  Aaron again cried out.  The black marker again marked the straps.  THIS is where these night straps need to be.  You have THREE days to get them to that position.  EVERY night you need to tighten these straps.  They will stretch his feet at night - while he sleeps.

Aaron wept.  Tears pouring down his face.  Straps 3 and 4 were removed but strap 1 - it stays.  Tight.  Firm. 

Braces.  Blue Straps.  Black Markers.  One traumatized and wrecked little boy.  He cried all the way home.  Rocking.  Banging his head.  Throwing his body around in his car seat.  Over and over and over again.  Hour after hour of that long rush-hour filled ride home.  Reminders to us that he spent six years self-soothing because he knew not the comfort of loving parents.  We did all we could short of loosening that strap.  Nothing worked.  We put our little son to bed crying.  Rest encouraged only by drugs coming in fits and cries throughout the night. 

This morning - he still sleeps fitfully.  Rocking in his sleep.  Crying out.  We stare at each other in exhaustion and sorrow.  We know this will pass.  We know that he will accimilate to his new normal.  We know.  But knowing and experiencing seem very far apart at this point.  Right now, in my opinion - braces, blue straps and black markers stink.  Watching my little son suffer - beyond words.

For all those wondering and praying for the Davis family.  There is hope.   I don't have the energy to post today but they ARE going to appeal.  I will share what I know tomorrow.  We ARE going to stand with that family in prayer like we have never prayed before for Kirill and HIS FAMILY.  God is going to win because He has already won!