JETTING TO CALIFORNIA

Jetting to California

Travelling by private jet to California was a gift beyond measure. We were able to drive Riley right up to the plane without the chaos and startle-evoking noise of the airport terminal. The jet also flew faster than a commercial airliner and travelled at a  higher altitude; avoiding the turbulence found at lower elevations.

 

 Lear 35 getting ready for take-off  





Evan co-piloting



My cousin and her husband have graciously opened their spacious “Tuscany” style home and given Riley a quiet room with a view of lush rolling hills carpeted with grapevines, orange trees and lofty oak and cedars.



Riley's Room on main floor (right)    



We took Evan along with us to see where his brother and mother would be staying and my mother also came to lend a hand. We are fortunate as well to have my brother and his girlfriend living nearby. They have been tremendously supportive. 

The day after our arrival Riley met with both of his doctors. It quickly became apparent that our trip to California was critical.   Despite frequent phone consults, the medical team seemed shocked by how ill Riley had become in the last few months and let us know that it may take over 6 months for him to truly begin to feel improvement-devastating news.

Fortunately, their expertise with the complexities of Lyme disease had them suggesting a number of medical options and local resources.

It was extremely difficult for Riley to adjust to his new surroundings and we had a number of brutal evenings where his level of anxiety, nausea, and discomfort rose to new levels.  One night it took three of us to get him to the washroom and he described “demon eyes” telling him he was not trying hard enough and would never get well. Listening to Riley’s fear of not having the strength to continue the battle (at one point he stated that he wanted to die) was one of our lowest moments to date. 



Evan having a moment with Riley



Last Sunday the time came for us to leave Riley and Christine in California and return to school and work.  Words cannot begin to describe the level of sadness surrounding our departure.  We knelt beside Riley’s bed while he painfully draped an arm around each of us. Slowly and tearfully he raised his hand to his heart space and Evan and I returned his tender gesture. It is counter-intuitive to leave your sick child behind...something akin to being told you cannot enter a burning building where your son remains trapped. So with heavy hearts Evan and I left for the airport.

We arrived back in Calgary late that evening to discover that friends had left Evan and I food and words of encouragement...something to take the chill off our otherwise cold and vacant home. Christine also informed us that evening that one of Riley’s medications had been changed and his evening had been better; lower anxiety and startle.

For now, our family photo has been torn in two rough pieces...Christine and Riley in the U.S. for an undefined period of time, and Evan and I left in Calgary to return to the new “normal”.  Yesterday I awoke to this poignant e-mail from a friend:

“I rise...I stretch...I wash...I dress...I sip...I stress...I think...

And I hear a voice, I don’t know whose, from where, in the dark that I try to push through this morning, reminding me of this desperate soul making gasps in California and his mother and father and brother whom I have know so long, whose lives are something completely different today than any I could have ever imagined only a year ago.

Sadness...Brokenness...Nonsense...Ridiculous...Evil...Anger...Tears pouring...

Ouch—deep, long, defeated, aching of rage.

PLEASE PLEASE PLEASE COME BACK RILEY!! I NEED YOU! WE NEED YOU! WHY IS THIS HAPPENING? STOP!”

Yes it is true that we need Riley to turn a corner and to witness a lessening of his symptoms! Until such time we continue to marvel at the outpouring of support we have received. So many compassionate and generous acts...reminders that despite worldly forecasts of doom and gloom, generosity and kindness continue to be alive and well!

Gratefully, Terry

Taking turns having a few moments of fun and exploring our new surroundings:

 

Evan with Grandma Lindberg and Elaine



An Afternoon Exploring San Fransisco     



Leaving on a Jet Plane

Just a quick update:
We have finalized plans and are flying to California at noon today- Wednesday, January 19th.

Through the concern, prayer, big heartedness, and generous efforts of a dear friend...several people (known and unkown by us) very kindly came together to provide the finances to fly Riley by private charter.

This is absolutely amazing and such a gift.  We were very concerned about Riley navigating the airport with all the noises, wait times and hustle and bustle-the private charter will allow us to avoid all of this and fly directly to Oakland- the nearest spot to our destination.
Riley is equipped with custom earplugs, sound blocking headphones and will receive door to door service.

The four of us are going, as well as Terry's brother and mother.  Terry's brother Grant lives down there and will be a great help as we settle in.
We will be staying with Terry's cousin and husband (nurse practioner and ER doc-hurray!)....they are opening their home to us and we are so grateful.
The plan is that Christine and Riley will stay there for an extended period of time...to allow face to face support from the LYME medical team there.
Evan and Terry will return to Calgary on Sunday, January 23rd.

We will keep in touch through this blog.  Thank you everyone for sticking by us through all of this.

"Hope begins in the dark, the stubborn hope that if you just show up and try to do the right thing, the dawn will come. You wait and watch and never give up".

On a Lighter Note

While out for a frigid winter run beside the Bow River on the weekend, a salmon coloured band suddenly unfurled itself across the bleak skyline.  Instantly my mood lightened and I remembered a humorous incident with Riley.

I was home alone administering his evening medication and assisting him to use the washroom. With all the energy he could muster, a word or two at a time, Riley let me know that if it was not too much trouble, he wanted to take his medication in bed and then have me help him to the washroom and provide him with a hot washcloth there for his face. I let him know I understood completely and proceeded to carefully measure out his medication. I placed the medication in the washroom along with the warm washcloth before tip-toeing back to his bedside. Riley’s forlorn expression upon my return said it all...he was unable to speak so I spoke for him:  “Listen dumb arse, I am barely able to function here and you cannot seem to follow a simple set of instructions!” Riley’s mouth formed a painful half smile, a tear rolled down his cheek and we did everything we could to contain our laughter to avoid startling him.

I am thankful for these moments of levity that break the tension, and like the lightening of the sky, tease hope out from its’ hiding place.

Mr. “Dumb Arse” Lindberg

Happy New Year...Let It Be So!!

Happy New Year to you all! Time to turn the dial on your “etch a sketch” and make way for the adventure and promise of a New Year. Last night Riley whispered to me that he was viewing 2011 as the year of his renewal. I continue to be amazed at his ability to hold on to hope despite the severity of his suffering.
We’d love to tell you that Riley is feeling considerably better and that our life as a family has returned to a kind of normalcy. In reality he continues to bravely endure each passing day with little sign of improvement and a heart-breaking set of debilitating symptoms. Over the holidays Riley developed constant finger tremors; leaving him unable to hold a cup or spoon and feeling continuously startled and trapped in his body. We now have to purée his food and pour it into his mouth using a Dixie cup, shave him, and brush his teeth. In consultation with his medical team we chose to take a momentary break from the IV antibiotics last week after a frightening evening where Riley’s blood pressure/pulse roller-coasted erratically and he described himself as completely detached from his body. As of today he has started back on a revised, less intense antibiotic regimen and we will see how he manages. 
Although I cannot recall the song containing the lyrics, the expression “dog-shit tired” captures some of the collective feeling in our household. A bone-weariness has set in…as if someone threw us in a burlap sack and hit us with hammers all night long. An unfamiliar irritability pokes at us and grief curls us up in a ball. Still we forge ahead.
What is it that sustains us?  Alongside faith, humor, and Riley’s courage in the face of suffering, we are nourished by an amazing community of care. I have come to define HOPE as the: Hearts of People Everywhere. We continue to be overwhelmed and humbled by the profound outpouring of support we have received: borders crossed and individuals coming together to provide financial support for Riley’s treatment, Christmas lights strung up outside Riley’s window, a neighbor offering us the use of their home, errands run graciously, meals on the doorstep including Christmas dinner, family and caregivers’ home visits (giving us a much needed break), invitations extended to Evan to leave our home for an adventure, air miles, prayers, e-mails, and numerous phone-calls of encouragement. 
May the year to come fill you with a rich set of memories and indeed be Riley’s year of renewal! 
With tremendous gratitude, Terry


A note from Christine:
OK…so Christmas was a bit tricky to say the least…the neurological symptoms for Riley include being terribly startled by sound, quick movements, or touch. His senses are in overdrive (BIG TIME)…so we tiptoe around the house, and are constantly “shushing” one another.
How do you open presents in silence?  Not an easy task. The Hammond family saved Xmas morning. They lent us their beautifully sewn, environmentally friendly, cloth bags… totally silent to unwrap (no tape, bows or cutting necessary).  BRILLIANT!!  Riley sat up valiantly all morning by the tree receiving his IV meds while we opened gifts.
Evan opened Riley’s stocking for him and Riley’s eyes got big in wonder and gratitude…he could not smile because of the facial paralysis so his eyes did the talking.
Evan and I decided we should write into the Guinness Book of World Records to see if we qualify for the “Most Silent Xmas Celebration Ever”!

Steps Ahead:
Riley’s condition has not turned the corner like we had all hoped and the doctors in California really want to see him face to face in order to better respond to his medical needs. We are grateful for the care from Dr. J, Dr. T and nurses locally, however feel that consultation with the team in California is much needed at this time. We are making plans to take Riley there within the next couple of weeks. With wheelchair, earplugs and airline assistance hopefully the trip will be uneventful.  We will keep you updated as plans are finalized.

Riley asked me to pass on his thanks for so much care and support.  We tell him daily about emails, notes, meals etc.  He is so grateful and tender towards all of you.  He misses his friends, school, hockey, outdoor skating, skiing, driving, texting, hanging out with Evan and so many other things! 
He never gives up hope- and when I asked him how he occupies his thoughts day after day in the prison of his body- he whispered, “Mom, I have a million memories to focus on and I walk through every detail of them in my mind.  I also think about all the things I have to look forward to-I am very ill but I’m not down.”

From Riley and all of us…Thank you for sticking by us!