Courage is not the absence of fear, but rather the judgment that something else is more important than fear.

- Ambrose Redmoon

The way is not in the sky. The way is in the heart.


Sunday, April 26, 2015


Re-cov-er-y:  1. The act or process of becoming healthy after an illness or injury
2. The process of combating a real or perceived problem 3. To return to a normal state of health, mind or strength 4. THE ACTION OR PROCESS OF REGAINING POSSESSION OR CONTROL OF SOMETHING LOST OR STOLEN

All of these definitions of recovery can be applied to Xavier.  He has been in a state of recovery for 7 months now.  His body went to the very edge of death...basically hanging onto life by the thinnest of strings and so the path back to a "normal" state has been long, dark, bumpy and paved with pain.  His soul has been battered and bruised along with his poor little chest and legs.  His spirit has been squeezed as tight as his little arms and hands.  He has been struggling to regain possession of that which was taken from him.  That's the very nature of congenital and aquired heart take and take and take till there is nothing left but ache.  

Xavier's soul was the first part of him to come back.  It only took a few weeks and we could see the light return to his eyes.  We could see the humor, the sass, the attitude creep back.  It was uplifting, spiritual and terrifying all at the same time but it truly was out first real signs of hope of recovery.  The first moment that recovery became a true destination.  

It took more time for his spirit to return to us.  He struggled neurologically for what felt like forever.  He would just scream...not in pain but what seemed like terror.  I hate to even try to think about what was happening in his little brain.  I begged God to make it stop, to give it to me instead.  Now I just ask God to wipe it from his memory....I hope it's like it never happened....I just pray he forgets.  But with time and meds that dark vail was lifted and his happiness, real legitimate happiness made its way to the surface.  It didn't replace the pain and fear and anxiety but it lessened it.  Made it more bearable.  Not just for Xavier but for all of us.  

Xavier now finds himself in the throes of physical recovery.  Making small, deliberate progress.  The movement of a finger, the wiggle of a toe, the turning of his head.  It's exciting, grueling, frustrating and absolutely amazing.  He works so hard each day to recover that which was taken from him.  His independence, his freedom.  He fights.....he fights his body, he fights his therapist, and at times he even fights his mommy...and we, all of us invested beyond measure in his recovery would not want it any other way.  

Xavier is not the only one in recovery.  Our family has found ourselves trying to get back to the light as well.  We were all changed the day of his arrest.  Each in our own unique ways.  In ways the other will not understand.  My struggle with being a witness to it all, Nates struggle with being home and getting that call, our parents and friends struggling with how to help us, what to say.  Elliott having her perfect world turned on its ear..My heart friends struggling with the fall of one of their own and silently wondering "will this happen to us?"....we all find ourselves struggling to regain possession of what we lost.....

BUT catching small little flickers of what we gained..

A deeper understanding of love, a better outlook on life, a deeper connection to each other, a better relationship with God, a army of solders here at CHOP batteling with us to get Xavier back, a drive to make changes, to BE THE CHANGE WE WANT TO SEE.  

For although we find ourselves on the front lines of recovery, we find ourselves better equipped for the battle and prepared to claim victory in this war.  We are taking back what was taken from us...

1 comment:

  1. Love and miss you guys! You're in my prayers. Dr. Gil