Fear Not

“As long as it’s nothing degenerative everything should be fine” these were words I heard from my dear cousin as I was about to drift off to sleep in eager anticipation of Eli’s MRI the next day. This conversation happened three years ago tonight. 

There are certain things you will never foget in life and the next hours fall into that category.

As I woke on the morning of Sept 20th it was with a start from a dream that I just had. Dreams are nothing new or surprising to me because it has always been my bridge between myself and My God. Now this dream was a bit concerning and somewhere in me I knew it carried a message. The dream was simple and quick yet powerful enough and I had a feeling I was being prepared for something, unfortunately it was something that I could have never imagined.

A cross… Up in the corner of where I was looking… A cross but not your typical cross. It was beautiful and made of light just as I believe many spiritual things are. It was not firm and rigid but soft around the edges. This cross was not made of anything but words. Faith, hope, love, promise, life, believe, God, trust, prayer, the list goes on. This cross had words going up and down and left and right… Made of light and almost alive. As I looked at the cross I could see every word individually and in my dream I knew this meant something. When I awoke I knew it was even bigger than what I thought as I was sleeping. As much as I felt prepared that God was in control I could never be completely ready for what lay ahead the rest of the day. 

Everything was normal as Eli was being put to sleep for his MRI. Off to the waiting room we went but all of a sudden the nurses that had been so friendly slowly stopped making eye contact in the waiting room… After two hours they slowly stopped even looking our way as they passed us. These are things I will never forget. I ran outside knowing something must be wrong calling everyone I could to ask them to pray. I was in the middle of a panic attack… Heart rate probably 200 and feeling I would not make it back to the waiting room. Well I did and Hut was much calmer than I was.  As I went to call the doctors office to say I wanted answers before we left she said that the Doctor would be down to talk in just a few minutes. Holy shit! Omg this is effing horrible!! In a few minutes we went back and Eli was still sleeping but there was the poor doctor. A look of “omg how am I going to tell them what I have to tell them?!” She took us in her room and shut the door…. I thought for sure it was a brain tumor but she shook her head no. Then the last words I spoke to my cousin came rushing back…” As long as it’s nothing degenerative” she could barely get it out but eventually said Metachromatic Leukodystrophy. Wtf is that?!!!! All I heard were three things; terminal, no treatment and genetic! There was nothing else to tell us at this point so we went back to Eli who was smiling by now with another nurse and eager to leave. There were no tears to be shed at this point so it was off to the car to head home.  This was just the beginning.
Lots of work would lead us to where we are today… Lots of work and lots of amazing peoole. 

Obviously a lot has happened over the last three years ….. Another diagnosis….marital problems…lost relationships…. Balancing Eric and Evan along the way…Disease Progression ….appointment after appointment… Leg braces….temper problems….numerous trips to Milan…. What seems like struggle after struggle. YET there have been numerous trips to Milan, new relationships, new friendships, laughter, lessons learned, the gift of the present moment and all of these last things mentioned are really the most important. Yes Milan is mentioned twice because it was a challenge for 9 long months living there but it has been a gift that will hopefully keep on giving….. Giving the gift of life to Eli and Ella. 

The reality of where life has gone the last three years, many don’t want to hear…. It’s not fun. Changes in so many areas of life that were never imagined…. But…. More importantly there is also good and I will end on this note ….

I was looking at pictures this past week on my computer I saw a common theme over the last three years. Smiles…. And lots of them. Even in the midst of chemo, the sickness, the time away from family, the isolation days, the lonely days in a hotel room on a 97 degree day where you couldn’t leave, the struggles with school, disease progression, lots of appointments… The list goes on but one thing I saw throughout was joy! Both Eli and Ella smiled, laughed, loved and were loved… They found happiness or joy in the midst of the unthinkable… They found smiles in the simplest of things. This has been a game changer and a life changer from the beginning.  To follow their lead and to try to understand  what they feel has been challenging to say the least but it has been a gift. 

As I was at Evans open house the other night I ran into the Mullens and Jim happen to have a Warrior shirt on…. I could not be more grateful to those that have not forgotten… To those who continue to realize this is a never ending journey… To those who still put their shirt on and even for a second think of Eli or Ella… I can’t thank you enough. This “fight” or “journey” will never end. Eli’s journey in this life is not easy and that is the hardest thing to accept, but with so many people who love him I know he will continue to smile and laugh no matter what comes his way!   

  Three years later ! 
In two short hours after this pic was taken I would learn what true pain was. The innocence of life was stolen … Yet the smiles remain… And  even though some days are tougher than others Eli continues to show the way! 

~ by Rebecca on September 19, 2015.

Posted in Life after diagnosis
Tags: diagnosis, eli and ella, lessons, life changes, metachromatic leukodystrophy, MLD, warriors