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...

Sunday, February 1, 2015

solid ground

Have you ever stood in the same place for so long that it starts to feel like the earth is moving under you?  Stood still for so long that you begin to lose your balance, you begin to lose track of your place?

That's what life is starting to feel like now.  We've been standing still for so long, without any progress that we are actually going backward.  We are starting to feel dizzy and shaken.  I am flabbergasted that we are well into our forth month at CHOP.  It's gone so fast yet so painfully slow at the same time.  Xavier has definitely made progress...progress that amazes the neurology team.  His surgeon tells me over and over "all that matters is getting to the top of the mountain..don't dwell on how long it takes to get there".  Xavier is doing things that, quite frankly, many professionals here never imagined possible and that's without any intense rehab.  "Imagine what he will do in rehab" they say.  "Now if we can just figure out a way to get him and keep him there"...,

Nate and I were both frustrated and we were not afraid to hide it when they brought X back to the floor.  We felt like we were not being heard and basically ignored.  And although we agree that rehab needs to suck it up, educate themselves and get better prepared for Xavier's return...the 6th floor is where he needs to be right now.  We still have some kinks to work out with his plumbing.  The most frustrating part is that  what will really help get his new circulation working right is getting up and moving, but rehab will not take him till he is in a better place medically and so round and round we go.  

If he can't go to rehab right now, I am on a mission to bring rehab to him. There is nothing like a heart mom on a mission.  I requested advance rehabilitation equipment (available and not being used downstairs) be brought to him and a sit down, face to face meeting between both teams.  I will except nothing less then the best for Xavier, nothing else will do.  We have always received excellent care from the cardiac center and we we will settle for nothing but excellence from rehab (this is after all the best hospital in the country)!!!! 

The ground beneath our feet is shaky right now, no question.  But we are stronger than ever, and being held up by all of you.  Your prayers, well wishes, kind words and gifts have kept us upright.  We ask you to continue to walk with us, help us raise awareness and keep us standing...until we find solid ground once again.