Filled with Gratitude

Thanksgiving....
The table is set, the turkey is cooking, crisp Fall air is wafting through the kitchen window.
So much to be thankful for this Thanksgiving.

I am filled with a deep sense of gratitude,  while at the same time this weekend, feeling a mix of both joy and sorrow. Yesterday, while at our church, John, our minister, put into words, the stirring of my heart these past few days. He said that joy and sorrow are married partners in life and that deep gratitude is often birthed from the experience of both in our lives.

Yes, yes, yes! A resounding yes.
Joy and sorrow- intertwined.


This weekend I am experiencing both joy and sorrow, and have felt conflicted and somewhat pensive as a result. However, John's idea that deep, heartfelt gratitude is often born out of the experiences of joy and sorrow in our lives- resonates with all that our Lyme journey has taught us over the past 5 years, and helps me to sit with these emotions, and for it to be OK.

JOY
Riley is thriving.
Yes- thriving!!!
He continues to heal in body, mind and spirit. He is once again embracing life with vigour, energy and enjoying every minute to the fullest.
WOW!!!


Since we last updated the blog, he has continued with therapies that are helping him reach full health and strength.



He is back at school in an adult education setting,  completing grade 12 courses he missed after becoming too ill to graduate from high school in 2011.  He beat his brother Evan (by half an hour), in passing his driver's test, and is enjoying the independence that comes with driving.
He has a part-time job and is absolutely thrilled to have joined an intramural hockey team at Mount Royal University.

How can our hearts not well up with gratitude and joy?
We sometimes look at each other in awe, pinching ourselves to see if it truly is real that he is once again healthy and looking forward to a future free of lyme disease and chronic illness.
You who have walked this journey with us- are part of this joyful rebirth of health.
I know you rejoice with us, and have been captured by Riley's tenacious spirit and hopeful spirit.
The darkest days are traumatic memories that at times still live close to the surface, but for the most part they are being generously replaced with new found hope and life.


Sorrow....in the midst of joyful new beginnings for Riley, our hearts have also been heavy with grief these past couple of weeks.
During the same time frame of Riley's illness, we have come to know a very dear family, whose daughter Danielle has also been very, very ill with Lyme disease. Unfortunately, despite Danielle's courageous, and inspirational battle with Lyme disease, she unexpectedly passed away last week, and leaves to grieve a large community of family, friends and fellow lyme sufferers.
Riley and Danielle only met a couple of times during their years of illness, and although we did not have the good fortune of knowing her in her carefree pre-lyme days, we know that we met someone very special.
We are in awe of this family's strength and faith, and are filled with gratitude for their support, encouragement, and prayers over the years.
We know that Danielle is no longer suffering, but we still struggle with the insanity of Lyme disease in this country.  In her honour, we are determined to continue to push for better testing, diagnosis, and treatment.  Both Danielle and Riley were being treated by the same doctors and clinic in Kansas. Danielle was scheduled to go there in the upcoming weeks.
Proper care should not be geographically and financially inaccessible to Lyme patients.

Joy and Sorrow- inevitable partners in the journey of life.  It is a mystery why some people live long and healthy lives, while others struggle with illness and loss, or are taken from this life way too soon.  I am grateful for faith in a loving God who is with us through all of this mystery. We are not alone.
Danielle will continue to be an inspiration to all of us- she lived with grace, tenderness, and deeply touched our lives.
You will not be forgotten Danielle. 

             _______________________________________________________________

For some time now, Riley has been wanting to share with you some of his thoughts about what this journey has been like for him, and what he has learned from going through this experience....so we thought we would share with you, excerpts from a refection we shared at our church last spring.
Both Terry and I, as well as Riley spoke...we have included excerpts spoken by each of us.

Prior to speaking, we had been reading a book called Stitches, by Annie Lamott.

Excerpts from Christine:

"In her book, Lamott talks about how we get through the hardest of times by stitching ourselves to one another and to God, and somehow by doing this we are able to make meaning from life's hardest experiences.

She says, “Sometimes we are barely pulling ourselves forward through a tight tunnel on badly scraped elbows, but we do come out on the other side, exhausted and changed”.

The years of Riley's illness felt like that- but here we are at the light, nearing the end of the tunnel, doing the physical and emotional repair work- of healing. As you can see from Riley’s presence here today- he is on the road to healing, and he is excited to share his story.

People often ask me how I made it through. What kept us going? Where did we find our hope, our strength?

First of all:

We learned to ask for and accept help. This was not easy. I wanted to think we could do it on our own.  In every way imaginable our community of family, friends supported and upheld us.  In her book, Anne Lamott says,

“Gravity and sadness yank us down and hope gives us a nudge to help one another get back up, or to sit with the fallen on the ground, in the abyss in solidarity”.

No one had answers for us, but people helped us get back up and put one foot in front of the other….or sometimes, people just sat with us in the abyss- wept with us , held us and stayed with us in solidarity.

Community helped us choose hope, choose life.

You see, the stitches that sustained and held our ragged pieces together- were all of you….we stitch ourselves to one another and help each other thread the needle, tie the knot and stitch by stitch- keep the fabric of our lives somehow sewn together. That is one of the ways God shows his presence, through showing up for each other- God is there.

Next… being able to see what really matters, to see beauty and choose gratitude- even in the smallest things. This seems so counterintuitive, when in crisis….but it just came to me at unexpected times.

One poignant moment between Riley and I, happened one night when a friend had come over to visit us and parked out front was his new sports car. Riley LOVED sports cars. In those days we kept the curtains in his room closed because of the sensory issues he had to light, and movement, but I just had to try….to see if he could catch a glimpse of the car out his window.

I took a chance. I quietly asked him if I could pull back the curtains so that he could catch a glimpse of Ian’s car. I thought this would bring him a tiny bit of pleasure, joy- just to see it.

He nodded yes. So I pulled back the curtains, and pointed to the car under the streetlight. He nodded and looked for a long time. He couldn’t smile at that time because of facial paralysis, but with his eyes he smiled.  He kept his gaze for a long time, but he seemed to be looking off into the distance, so I began to wonder if he could really see the car.

He gestured for me to come close so he could whisper.  He said, “the moon”…..its stunning. I haven’t seen the moon in 2 years”.

It dawned on me that Riley had not been outside at night in over 2 years, 2 years. And what gave him awe that night was not the sports car, but the light of the moon coming through the trees above our house.

Wow- the moon. Brilliant, God’s creation, always there but so often overlooked.

One of the other things that has struck me anew…with the loss of parents during this time, and during the hard days of set-backs and recovery for Riley….LOVE always wins…at the end of the day…this is where our hope and meaning come from, and what provides the fuel for repair.

I love what Lamott says; “Out of the most unsightly rags of life, there is a promise that we will endure, ….and then out of the wreckage, something surprising will arise”.

God says to us:

“Do not be afraid, I am with you.

I have called you each by name.

Come and follow me, I will bring you home;

I love you and you are mine.”

So we continue to "darn and stitch"…  continuing to help Riley recover in body, mind and spirit. 

Its hard work. We are battered, bruised, but also miraculously in tact at the same time. 

Excerpts from Terry:

Happy Mother’s Day! It has been said that if men had to be pregnant we’d all be extinct. Somehow the profound bond between a Mother and her child will always be a mystery, just outside my grasp. Yet two of the happiest moments in my life were spent witnessing the birth of our sons, Riley and Evan. With Riley, Christine was in labor for 21 hours. I sometimes wonder if Riley was bathing in the safety of her womb and reluctant to join the world because he knew the suffering that was to come. Birth, a beautiful mystery and an act of suffering. Did God in her wisdom create the birthing process to prepare us for life; a training camp for the triumphs and tribulations that lay ahead?

As you just heard from Christine, it is impossible to adequately capture our four year journey...it would be like trying to describe every color or feeling you’ve ever experienced. What I can say, is that Riley’s battle with Lyme disease has been the most intensely painful event in my life to date and also the most life-changing and inspirational.

I have experienced times of utter brokenness along with moments of profound appreciation for the simple beauty and gift of life itself.

I recall standing over Riley’s bed with Evan in California; preparing to depart back to Calgary...Riley lies almost motionless in his bed... emaciated, pale, eyes closed, deathlike, and we weep inconsolably as we say goodbye to him. I am terrified that this is the last time I will see him alive... that I will never again see his bright smile and enjoy the gift of his company.

There were moments along the way when darkness threatened to consume me and it seemed easier to imagine crawling into a dark hole than facing the blinding light of day.

At these times I felt abandoned by God..."my God why have you forsaken me!", when in retrospect it was I who had pulled away from God. I wanted life to be fair and predictable. I have now come to believe that much of my suffering stemmed from the fact that I had not accepted pain as an ever present and even necessary part of life. To quote the author Jim Harrison:

“We survive by learning from pain and we learn what we need by suffering.”

The truth is that I am not in charge and the people and things in my life that I’ve come to care about are all on loan to me. Life is not always fair but if you look closely enough it can be breathtaking.

I leave you with a quote from a book called “Enjoy Every Sandwich”, written by a physician dying from cancer named Lee Lipsenthal :

“You get to choose the world you want to live in. It can be a house of fear and constriction or a house of mystery and creativity. Do you choose anger or compassion about your frailties and the frailties of others? In your world will it be the fear of death or the joy of life?“

Riley's Reflection:

Hi everyone, I am so glad to be well enough to stand here, and share my story with you!

As you have heard from both my mom and dad, the last four years have been quite a journey for all of us. I would like to share a little about what it was like to go through this illness, and a few things that I have learned along the way.

At my sickest, I experienced very dramatic neurological symptoms. Sensory input of any kind (sound, movement, touch) was incredibly difficult. When I was confronted with any of these forms of stimuli, my body when into a state of complete panic, I started sweating profusely, and I felt as though I was being electrocuted. In those moments, I truly felt as through I was tied up in cage, helpless and unable to move. At one point, even looking at leaves fluttering outside my window, was too much too handle. These symptoms, as well the facial paralysis, pain, and shear physical weakness that I experienced in my sickest days, left me unable to do much of anything. In those days, reading, listening to music, watching T.V., or even spending time with my family, was impossible. As a result, I spent those days, lying in bed on my own, reflecting on my life before Lyme disease, and dreaming about a future free of illness.

During this time I realized that Lyme was incredibly powerful, that it could reach every part of my body, and cause immense pain and suffering. As I got sicker and sicker, my body deteriorated to the point that I was barely aware of my surroundings. 

It was as though I was in a cocoon hunkered down trying to survive. My doctor described this as a conscious coma. As the world around me closed off more and more, I realized that within me, there was one place I could go, where no bug, or infection could touch me, and where I would be completely safe. This place was my soul. My soul was filled with light, and love and great memories of time spent with family and friends. I recognized that if I dove deep within myself, and into the soul that god had given me, I would find all the strength, hope and courage that I needed to conquer Lyme disease. In my soul, I no longer needed to battle Lyme alone.

Memories of family and friends became so precious to me, and I turned them into movies, that I played over and over in my head. I didn't know how long I would remain ill, and I worried that over time I would forget what the faces of my family and friends looked like, and what their voices sounded like. I spent many hours lying in bed slowly bringing a picture of each person I knew, to life in my mind. Once I could clearly visualize a person, I would then go through all the memories that we had shared together, slowly reliving all of the wonderful moments of the past.

I did a lot of visualizing during those days, mostly about loved ones, but also about the sports and hobbies I enjoyed in the past. The funniest thing I did though, was try and visualize how to properly put on hockey gear. I was worried that I might not remember how to correctly dress myself once I was well enough to play hockey again. I would lie there, slowly talking myself through my old routine. "I guess you have to start with the jock, then maybe the knee pads and socks, followed by your pants. If your put your skates on before your pants that won't go well.

Around this time, my mom and I moved to California, to be near the doctor who was overseeing my treatment plan. My doctor's office was about an hours drive away from where we were living, and over the six month period that we stayed in California we made numerous trips to and from that office. Towards the end of one appointment, I remember catching a brief glimpse of the calendar on my doctor's wall. In that moment, I realized that I had no clue what day it was. That was a powerful moment for me. I realized how separated I had become from the world, and daily life. So much was out of my control during those days. I often felt helpless. This motivated me to find ways, however small, to remain connected to the world. 

As my mom was helping me get back into the car after my appointment that day, I whispered to her, "Mom what's the date today?" From that day forward, I started a daily ritual. I would say to myself, "today is Tuesday, February 8th, 2011, and Tomorrow will be Wednesday, February 9th, 2011".

I began to tally the days, telling myself that if I could make it through one day, I could make it through the next.

Throughout this time, my mom continually reminded me about the image of Spring. She said to me "When we are in the midst of winter and it's cold out, and there's snow on the ground, and the trees are barren, it's almost impossible to envision spring. The thought of green grass and flowers is unimaginable. And yet, every year, without fail spring comes, winter fades away and new life begins. She told me that even though my body was in the depths of winter, spring would come and I would recover.

It was funny actually, because we had been describing my illness as a very long winter, with signs of Spring hidden deep beneath the surface, my mom misunderstood me one day when I gestured for her to come over and whispered "Mom- its Spring."

She said- "You mean you feel Spring in your soul?"

"No; it's Spring" I whispered.

"Yes Spring is coming Riley" she replied.

"NO- today is the first day of Spring Mom- it is March 21st." Because I had been keeping track of the date in my mind every day, I knew that it was Spring before she did!

Three tasks that grounded me during my sickest months were showering, shaving and brushing my teeth. I was totally dependent on my mom to help me complete even these simple tasks. I made one trip to the bathroom each day. Everything about that hour in the bathroom was an assault on my senses-even drops of water running down my forehead as my mom washed my hair startled me. The stimulus overload of that routine was so depleting. So much so, that I had to have my mom help me shave and brush my teeth, on alternate days. It seems so strange that something healthy people take for granted, and do so easily without any thought or effort, became a daily ritual that connected me to the world, and made me feel present and alive.

A close family friend came to help my mom while we were in California. During his visit he and my mom walked to a bench she had discovered, tucked into a hillside just minutes from our house. There he sat with my mom, and through her tears of worry, anxiety and fretful breath, he spoke a meditative prayer... reciting the words “I AM HERE”.  He said and she repeated…I am here, God is here. Riley is here. My mom shared this meditation with me, and at some point every day, we recited these precious and simple words. I whispered, "I am here and I love you". my mom responded, "Riley you are here, God is here, YOU are not Lyme disease, YOU are Riley; you are here". Repeating them as a reminder of life and hope.

During the years that I was isolated in bed, meditation became a very important part of my day. In addition to the prayers that were given to me, I also developed several of my own, that I said to myself daily. Given how sick I was, thinking about the next year, the next month, sometimes even the next hour, was often very overwhelming.

Over time I learned that the future was out of my control, and that really the only thing I could do, was learn how to get through the moment in front of me. During the toughest times, I used to say to myself "With each heartbeat your life begins anew." I would actually break it down into single syllables and match each one to the beat of my heart. Following that prayer, I would say, "I put myself in God's hands and trust in the process of life." These two prayers became my mantra, and my prayer of surrender. In those moments, I recognized that I was in God's care, and that my health and future were out of my control. This for me was a very profound realization. It took the burden off my shoulders. I realized that I didn't have to figure everything out, and that all I really had to do was get through the moment in front of me, God would take care of the rest.

While I was sick, my aunt sent me a beautiful poem that fit so well with what I had learned about staying in the moment:

      "As a traveller-Don't be gazing at that mountain, or river in the distance and saying; 
       How shall I get  over them?”… But keep to the present little inch that is before you, and   
       accomplish that in the moment that belongs to it. The mountain and the river can only be passed  
       in the same way; and when you come to them, you will come to the light and the strength that  
       belong to them".

This poem was one of many e-mails that my aunt sent me over the course of my illness. She sent poems, prayers, scriptures, hymn lyrics and heartfelt notes. The words I received from her, calmed me, connected me to God's love and fortified my soul.

One of the Scriptures she sent me is from the book of Isaiah, and I would like to share it with you.

Isaiah 40, Verses 29-31:

He gives strength to the weary; and increases the power of the weak.

Even youths grow tired and weary, and young men stumble and fall; 

But those who hope in the Lord will renew their strength.

They will soar on wings like eagles; they will run and not grow weary, 

they will walk and not be faint.

The symptoms that I experienced while I was ill were very isolating. However, even as I lay in California, miles away from all of those whom I missed and loved so dearly, I never felt alone. I knew that so many people were praying for me, and I could feel their prayers. I told John this, and he said what'd you mean you felt their prayers, what did that feel like? I told him that during the months I was hunkered down in my soul trying to survive, people's love and prayers actually felt like a protective armour that sheltered my soul and kept me safe. As I have described before, I spent so much time visualizing the people that I was separated from. During my sickest months, I feel like God helped me develop a spiritual connection with these people. As I lay in bed I knew they were praying for me, their prayers came to me as palpable emotions. I felt hope, peace, courage, light, but most importantly I felt love! 

Even my grandparents, who had both passed away while I was ill, felt close to me. I remember saying to my mom, I feel them within me every minute. Their strength, and love inspire me to keep going. I have never met two people who have so closely mirrored God's love.

Even though for such a long time I was unable to have visitors, so many people found creative ways to connect with me, and cheer me on.

To all of you who kept me in your heart - thank you. Your thoughtfulness brought me great joy, and gave me the courage to keep going.

My dad and brother had such a brave and difficult role to play while I was sick. They had to hang on while my mom and I travelled back and forth to the States for treatment. I am so grateful for their courage, patience, and sensitivity.

Time has passed since those darkest days, there were many ups and downs, and discouraging setbacks along the way, but approximately a year and a half ago, I started to make significant progress. After more than two and a half years unable to preform even the most basic of tasks for myself, things started to move in a positive direction. During my time spent at a clinic in Kansas, under the care of an incredible doctor and human being, I slowly regained the ability to speak, smile, walk on my own, and even skate on the ice again! My progress has been steady and I am regaining my health and future…It's like I've been given a whole new life! Things that I took for granted before, seem miraculous to me now. Even the smallest things feel so novel and exciting.

I can't say that the transition back to the world has been easy. After so many years separated from the world, many of those without the ability to speak, it has taken time to regain confidence in my own voice, and find my place in the world. In many ways I feel 15 and 80 at the same time. 15 because I still haven't experienced or accomplished all the things that usually happen between 15 and 20 - High school graduation, a driver’s license, first job, university, and 80 because this journey has given me a perspective on life that makes me feel like an old soul. I learned so much along the way. The most important thing I learned, however, is that there is no situation in which God's love does not suffice. His love provides the stitches of repair that keep the fabric of our lives together, and makes us whole.

Prayer:

May the God of mercy,

who is well acquainted with sorrow

Bless us with gentle comfort

May the God of comfort,

who is well acquainted with pain

Bless us with gentle healing

May the God of love,

who is well acquainted with all our yearnings

Meet our deepest needs and give cool water

for the thirst in our souls.    

West Coast -Summer 2014

Lake O'Hara Hiking- looking at the view with buddy Aida

Iceline Trail Backpacking - 2014

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