Happy Mother's Day...

   

      Over the past two years, the essential relationship between my Mom and I has changed.  Throughout my high school years, I was about as independent as a teenager could be.  I relished the process of making my own decisions, driving myself to school and work,  and working toward my  goals.  I was depending less and less on my parents to operate my day to day life.  I was becoming the captain of my own ship.
      In 2014, a massive re-alignment occurred.  No longer was I in control.  I literally had to depend on my mom for everything, it was like being a baby again.  I appreciate that I had a mother's love to come full circle again.  Since 2014 I have lost a lot but I have regained the wonder of the day to day tenderness of my mother's love.
     From the moment I was hospitalized, my Mom never left my side.  Her dedication to me saw us through some dark times and I relied on her to keep me going,  Through those hard times we learned a lot about each other and have realized that we are a part of each other, unbroken, regardless of the circumstances.
 
  We now have a chance to celebrate the depth of one another.

     One thing we enjoy doing together is reading a book filled with various blog articles,  After each article there are questions such as:  "What are some things you wish you had said yes to more often?" and "What are your favorite flowers?" Not many teenagers indulge their parents in these conversations. I am grateful for our time together and the experiences we share.  This is one of the blessings my illness has brought to both of us.

I love you Mom,
Happy Mother's Day!

A Christmas Carol

Today, December 21st, is the first day of Winter, the day with the least amount of sunshine.  You have probably noticed the shorter days and the sun setting a little earlier each day as fall progressed.  Technically, today is the darkest day of the year.  Today also marks the two year anniversary of my illness.  Two years ago today I was celebrating at my 17th birthday party.  My friends and family were gathering at my house.  Then without notice I developed symptoms.  That particular evening would prove to be perhaps the darkest night of my life…

Today is also a day where we consider the Christmas season.  Most people approach this season with mixed feelings.  We are eager to embrace the joy of the season and the promise of the Holy Spirit.  We also swallow a bittersweet pill as we remember loved ones who no longer are with us and recognize friends and neighbors struggling with conflict and sorrow.  The season brings highs and lows that gives the psyche quite a workout.

I was recently visited by the ghost of Christmas Past.  She took me back to December 21, 2008.  I am on a stage at the Granada theatre in Santa Barbara.  The theatre is packed with over a thousand people, and I am playing Martha Cratchit in a production of “A Christmas Carol”.  As I start to remember and embrace the experience she whisks me off to 2011 and I’m dancing as a pixie for the Historical Museum Christmas Party. In another memory I am at Church playing cello and in another experience it is the night before I get sick and I’m singing and playing guitar for the firefighters Christmas party. Also embedded in the journey is Christmas morning and I am with my family, opening presents and going on a ski trip.  There is so much joy wrapped up in the experience and memories. The ghost then leaves me to my slumber and I am comforted by these memories.

I awaken the next day and my mom gets me out of bed and bathes me.  She carefully and tenderly gets me into my chair.  My father makes me breakfast and feeds me.  It’s Saturday so around 10:00am my sister wakes up and wants to know if I want to go to the mall.  I’m expecting to nod off at any time and the ghost of Christmas present to visit me, but that does not happen.  Instead, I sit in my chair and experience a fit of consciousness. I cannot move.  I literally cannot do any of the things that brought me joy at Christmas.  But in the living room we have a Christmas tree and decorations.  I think about my dream the night before and all of my performances and trips from past Christmases.  I see the faces of my Mom and Dad, my sister, my grandparents, cousins, aunts and uncles and friends too many to count.  So I know I have lost a lot, but I am surrounded by people who love and care for me.  I still have an iphone, Amazon Prime and a credit card so I keep busy at Christmas time!  I now recognize the real meaning of Christmas; spending time with family and friends, giving to those that have less than myself, and being present with Jesus Christ. This is a time to free my ghost.

I also know that tomorrow, December 22, will bring a little more light than it brought today, and the next day even more so.  My prayer for this Christmas Season is that we all see a little more light each day this year and the ghost of Christmas future reveals the true promise of the Season to all of us.

To see my journey over the past two years check out the link below:
https://www.youtube.com/watch?v=isjmvbSaSNs

"Redefining Possible"

In recognition of Spinal Cord Injury Awareness Month, I would like to share what "Redefining Possible" has meant to me. My spinal cord injury is so much more than being in a chair. Although there is much pain, fear and loss it has taught me to triumph in the face of tragedy.

One of my early memories of my stay at Craig Hospital was the phrase "Redefining Possible.  It is kind of a mantra there. Those words are posted throughout the hospital. Most notably those words are printed boldly across the pedestrian bridge that connects the two towers. When I first got to Craig I did not know what these words were supposed to mean. I didn't really think of myself as having a spinal cord injury. I had friends who were in car accidents or suffered terrible falls while skiing. My condition was without trauma, things just stopped working.

My assumption was that my function would start to come back as quickly as it had left me. Soon I would be back home in Santa Barbara playing guitar, hanging out with my friends, and planning prom and graduation activities. My possibilities needed no redefining. As days turned to weeks and weeks into months, I began to appreciate that mantra more and more. Daily rituals and activities now were impossible. At least in the way I had known them before. I was learning new ways to do things and picking up new skills along the way. I was struggling with not returning to my life as I knew it before, but each day I saw less of the impossible and embraced more of the possible.

I was inspired by my fellow patients. I saw courage around every corner. People were doing things they didn't think were possible, they were achieving things that they did not think they were capable of doing. The care team and therapists were responding to us, pushing us to do more. Pretty soon you are caught up in it, and pretty soon you are redefining possible.

Small Miracles

“God is not a divine vending machine- we slip in a prayer and out pops a miracle.”

- Adam Hamilton

One of my lasting memories from the Cottage PICU was the outpouring of concern I felt from my friends and family.  I was the subject of many prayers throughout those early days.  Pastor Alan, from our church, came every day and prayed over me and my family.  Many cards and notices came from across the country and from all over the world.  When a prayer chain gets started, it travels fast and far.  People sent their support, love and showed that they truly cared about me and my family.  People even prayed for a miracle.

A miracle, I thought, would be my was out of this.  As time wore on and the prayer chain extended I was questioning if God was even listening.  When I was in rehab some of my friends got some return of their function.  For some these developments were miraculous.  For me, nothing much was changing.  How do I interpret the results of all these prayers?

The obvious miracle is when the severely injured are healed and can walk, or the blind are suddenly granted the ability to see.  These are grand miracles and obvious to everyone when they occur.  Some miracles, though, are less obvious and require you to look hard.  Some miracles wouldn’t make a great biblical story, or have a bankable Hollywood ending.  Some miracles are deeply personal yet universal truths, that when realized are liberating and reveal God’s eternal wisdom.

The quiet concern of a friend, the warm casserole dish of a neighbor, the caring touch of a nurse, the sympathetic cries of an elderly man, the sarcastic laugh of a childhood friend, the encouragement of a music teacher, the compassion of a loving family, the giving back to a community which has given so much.  I could go on and on…   The miracle is that I have not given in and nobody has given up on me.  Everyday something miraculous can happen.

“I asked God for strength that I might achieve.  I was made weak that I might learn humbly to obey.  I asked for health that I might do greater things.  I was given infirmity that I might do better things.  I asked for riches that I might be happy.  I was given poverty that I might be wise.  I asked for power that I might have the praise of men.  I was given weakness that I might feel the need of God.  I asked for all things that I might enjoy life.  I was given life that I might enjoy all things.  I got nothing that I asked for, but everything I hoped for.  Almost despite myself, my unspoken prayers were answered.  

I am, among all men, most richly blessed.”

 - Admiral Chester Nimitz

Why?

I often struggle with the idea of why this happened to me when my sickness has no known explanation. When I ponder the whys and the hows, it creates anger and frustration rather than anything constructive or useful. I have accepted that this is no one's doing and I'm now finding purpose in who I have become. This transformation continues to challenge my faith in ways I'm still trying to understand.

It is a common belief  that if you are faithful to God that you will be blessed with good things and no harm will come to you. However, the Old Testament is a book largely about people who prove their faith despite suffering.

Psalm 73 v26-28: "My flesh and my heart may fail, but God is the strength of my heart and my potion forever,...I have made the Lord God my refuge."

Most of the Disciples lived hard lives with pain and suffering. The Apostle Paul, one of the most faithful to Christ was arrested, brutally beaten, prosecuted, and put to death by the Romans. If those closest to Jesus suffered, what excludes me from my suffering? The bible does not teach that those faithful to God will live a life of bliss. Instead it teaches that persistent faith in the face of suffering will comfort, provide hope and strength.

It is another common belief that everything happens for a reason.  This idea was hard for me to grasp because I was comforted  in the fact that God wrote this into my life and must have a plan for me.  However, as Adam Hamilton examines in the book "Why", this would mean that God willed it, and actually caused it to happen.  He uses examples of 21,000 people dying of hunger each day, women being raped and babies being taken away from their parents.  I don't believe it was God's will for these things to happen.  However, in a world where tragedy and suffering occur, God creates purpose in these situations.  Through our hardships we develop character, compassion and a deeper understanding for the world we live in.   "... all things work together for good for those who love God, who are called according to his purpose." (Romans 8:28)

Throughout my journey I have come to realize a deeper understanding of myself, the world we live in, and my relationship with God. God resides in  the compassion of a friend, the tenderness of a caregiver and the generosity of a community.  Though my body may appear weak, this is the strongest I have ever felt.

"For when I am weak, I am strong" (2 Corinthians 12:10)

Happiest Place on Earth

This was our first real adventure outside of county lines, and although there were some nervous jitters, the excitement outweighed it all.  However, being frequent Disney goers, I was depressed I wouldn't be able to enjoy it the way I used to.  But the more I perseverated on this thought, the more I realized how selfish it was.  I know there are millions who have never had the opportunity to go to Disneyland and many others who were born with a disability that prevented them from ever standing on their own.  I was given a lottery ticket being raised in Santa Barbara, having an amazing family, and having enough money to enjoy many things life has to offer.  Although sometimes I feel I may have it the worst, I know there are plenty of others who would be head over heels to sit in my seat.  Sometimes it just takes looking at the big picture to realize how blessed I am.

That being said, we all had an incredible time at Disneyland.  My uncle Paul and one of our close friends from school and church, Julie Pitney were able to join us.  My dad booked us a suite at the Grand Californian which is located right in Downtown Disney.  However, I was most excited to see one of my favorite people from Craig Hospital, Chris Amacher, who has grown to be one of our closest friends.

The first day we spent rolling around California Adventure, where I was not able to ride the fastest roller coasters, but rode enough for my state of affairs.  My favorite ride was Mickeys Grand Ferris Wheel where we were able to have a birds eye view of Orange County.  Although this was my favorite, it was not for Emily.  When she thought a smoothie was being spilled on her head, it turned out to be puke form the gondola above!  After we got Emily cleaned up and went through a box of disinfectant wipes we met Russ, a Craig graduate, whose attitude, spirit and sense of humor added to the joy of the day.  Tuesday was spent at Disneyland where the sun was out and the weather was warm.  I was able to ride It's a Small World, Winnie the Pooh, and the Monorail but the highlight of the whole trip was simply spending time with my family and friends.

On this trip I learned that although things may be different, it doesn't mean it will be any worse.

A Road Less Traveled

Some of you may already know my story, but for those who don't, this is where it begins:

In the fall of 2014 I was what you'd consider a normal high school Senior. Most of my time was spent working on college applications and preparing for music school auditions.  My passions resided in piano, guitar, cello, voice and dance. I knew music was what I wanted to pursue for the rest of my life. I was a normal healthy teenage kid despite a minor case of Senioritits. Because my friends were busy with college apps and winter concerts, we decided to celebrate my 17th birthday on December 21st, the day before winter vacation was to begin. As friends began to arrive at my house, I knew something was wrong. I suddenly began to feel extreme pain in my neck and numbness and tingling in my hands. A panic overcame me and my Mom rushed me to the ER. Within minutes I was unable to walk and within hours I was completely paralyzed, unable to breathe on my own. A series of tests were taken over the next few days and the doctors came up with a diagnosis of Acute Flaccid Myelitis. I was the 101st case of this polio like illness and little is known about it. Over the next few weeks I was treated with steroids, plasmapheresis, immunoglobulin therapy and chemotherapy. Nothing seemed to help. The only thing keeping me alive was modern medical technology. A machine breathed for me and a tube fed me. My only form of communication was through my eyes. After five weeks in the ICU I was stable enough to transfer to a rehabilitation hospital. I was fortunate enough to be sent to Craig Hospital in Denver, Colorado. It is well known as one of the worlds best hospitals specializing in spinal cord and traumatic brain injury. Over the next seven months Craig Hospital not only helped me rebuild my body but also my mind and spirit.

My path may not be a traditional one, but my only limitation will be my imagination.  We have a choice to remain slaves to our past expectations or we can be pioneers and embrace new possibilities.