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.
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| The days of burning heat in his face |
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| Before jaw/throat treatments in Seattle |
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| 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.
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.
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| Boxing Day Classic 2013 |
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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).
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
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!!
LYME: A NIGHT TO FIGHT BACK!
FEBRUARY 20, 2014
CALGARY, AB.
BUY TICKETS & READ MORE ABOUT THE EVENT BELOW:
