Big Steps Forward

The greeting at the beginning of this blog entry has been edited several times…first a Christmas greeting, but unfortunately December has come and gone. 

How about Happy New Year.  Oops, that doesn’t exactly fit anymore.  

Now I sit in the lobby of a Wichita, Kansas hotel during this first week of February- hoping to finish writing a long overdue blog update with news of Riley’s continuing road to recovery.

As I write…thoughts and images from the last 4 years flood my mind. It is difficult to put into words what it is like to be coming through the darkest days we have known as a family, and to be experiencing a renewed sense of hope for a future free of Lyme disease for Riley.

In some ways, the days when Riley was in life threatening condition, seem now surreal and incomprehensible to us.  Some mornings I wake up with a feeling of dread and anxiety, similar to what I felt when he was so sick- not knowing what lay ahead, wondering how I would make it through another day.  It takes a few minutes to shake off sleep, and remember that we have a new normal now…..Riley is regaining his health and making strides each day towards healing of mind, body and spirit.

We are presently in Kansas for appointments with Riley’s doctors at Hansa Center, having flown here from a week in Seattle with the jaw/throat specialist. We are getting adept at the whirlwind flying route from Canada to the Pacific Northwest to the Midwest- all in a matter of days. These follow- up trips, continue to be key to his continued recovery progress.

Our last blog entry highlighted the summer of treatments in Seattle, aimed at correcting the damage done to his heart, lungs, circulation and autonomic nervous system during the 2 years of facial paralysis and illness.  It was a rocky road as Riley began wearing the appliance. Some days we marveled at what seemed to be miraculous progress due to the mouth appliance, and then other days we questioned our sanity in thinking that his lingering symptoms could be helped by this strange mechanical device that made him look and talk like a boxer who’d been in one too many fights.

 After two trips this past fall, to both Seattle and the Hansa Center in Kansas, Riley has made tremendous gains.  As many of you will remember, the heat and redness in his face was one of his worst lingering symptoms. Up until this last trip to the USA- he needed to use a fan 24/7 to cool his face.  He no longer needs the fan and is enjoying a new sense of freedom and movement. Along with decreased heat and redness, his heart rate is stabilizing, mental and physical stamina continues to improve and at times he is beginning to experience more restorative sleep.

The days of burning heat in his face

Before jaw/throat treatments in Seattle

Enjoying a new sense of freedom-- facial heat and redness gone and NO FAN!!!!
 Enjoying New Year's Eve with cousins Dennis and Christina

He is getting out and about in the world, and is beginning to get a sense of normal daily living again. He has enrolled in 2 online high school courses, although it has been tricky to get into a rhythm with reading, studying and doing work for these courses as his stamina both mentally and physically is still limited.

Sometimes it is not until he is attempting a new task, that he realizes a limitation that is yet to be overcome. For instance, due to the severity of his hand tremors during the years he was bedridden- he held his hands in very tight fists to control the tremors and ease the discomfort. Regaining full range of motion, flexibility and fine motor control has taken time and practice.  This has meant limited stamina and dexterity when getting back on the computer to type, use a pen to take notes for school, or to use his phone to call or text friends. Things we take for granted- for him require “rehab” and patience.

There are many more examples that are part of his every day journey back to full health. 

We are so delighted when something on the “can’t yet do” list, finally becomes part of his repertoire, and gets added to the “yes, I can” list.

With joy, he began skating before Christmas, and even played a game of shinny hockey at an annually held “Boxing Day Classic” game with friends. To see him take those first strides on the ice, skating like he had never missed a day, was something beyond words.

As we watch him work so diligently to regain control, function and responsibility for his life- we are amazed at his ability to look toward the future with gratitude, instead of looking back with a sense of resentment for what was lost along the way.

Boxing Day Classic 2013

As a family we are maneuvering the many layers of healing- realizing a sense of peace and wholeness takes time and patience. There are layers of trauma and loss for each of us, of course, most intensely for Riley. He is discovering what it means to come back to himself…not the 15 year old he was when he got sick, but not really feeling 20 years old either.  
He has missed out on some important milestones – graduating from high school, getting a driver’s license, summer jobs, cars and girlfriends, university, moving away from home….etc.
It is tricky business to discover who you are and how to be in the world, after so long in isolation.  He has been deeply impacted by this experience- of course physically, but spiritually and emotionally as well.  It is taking time to process all of this.  The life lessons and inner growth that has taken place for him are richer and deeper than many of us experience in a lifetime.  
One thing seems certain- this experience has given each of us a much greater appreciation for the sacredness of each moment, and the importance of practicing gratitude (even when it is really, really hard).

Riley's spirit is strong, and he is determined and eager to move forward, and with the help of his medical team, friends and family, we are confident  he will continue to make tremendous gains in 2014.

Thank you for your support, long suffering prayers, financial sacrifices to help us keep pursuing the right treatments, and your friendship and love.

Christine and family

Special Invitation to all our Calgary/Alberta Readers:

The Lyme Disease Association of Alberta Board has invited us to speak at their very first fundraising event- we hope that our story will help shed light on the potentially devastating consequences of unreliable and primitive testing methods, misdiagnosis, and lack of timely and appropriate treatment.

Our story is one of hope for individuals/families suffering from Lyme Disease- please join us in STANDING UP FOR LYME PATIENTS IN ALBERTA!!

Information below on how to get your tickets. This will be the first time Riley will speak in public about his journey these past 4 years. We are both excited and nervous!

LYME: A NIGHT TO FIGHT BACK!

FEBRUARY 20, 2014 
CALGARY, AB.

BUY TICKETS & READ MORE ABOUT THE EVENT BELOW:

http://albertalyme.org/events/index.html