Summer Reflections

In the tidal push and pull of life, in the flotsam and jetsam of it all, a stubborn part of me often chooses to flail against the current rather than acknowledge that a force much greater than I is at work. I tell myself:  “I am fine”, “Riley is fine”, and “The future will be fine”- as if I am some kind of conjurer or clairvoyant. Later, when things don’t turn out exactly as predicted, I skip over my blessings and land smack-dab in disappointment. What does it mean to “live in the moment” and to accept life’s “mixed bag” of joy and anguish?

“Trails are like that: you’re floating along in a Shakespearean Arden paradise and expect to see nymphs and fluteboys, then suddenly you’re struggling in a hot broiling sun of hell in dust and nettles and poison oak…just like life.”           
                                                               Jack Kerouac

In July,  prior to our first family vacation in four years, Christine and Riley travelled to Tacoma for two weeks of treatment to address severe damage to the structure of his jaw, palette and cranial facial bones.  Riley's years of facial paralysis have contributed to his lingering facial heat, redness, autonomic nervous system irregularities and general fatigue. Structural changes repositioned Riley's tongue, constricting the airway and compromising his entire cardio-vascular system.  The doctor likened Riley’s condition to a person trying to breathe through a narrow straw.  In this hypoxic state, his body has been stuck in a panic mode of “fight or flight", producing heightened anxiety, decreased cognitive stamina and disturbed sleep.  

After numerous x-rays, ultrasounds, and the monitoring of his vitals, the clinic team built a “space-age” dental appliance that Riley now wears 24/7. Although initially quite painful (forcing his lower jaw out and giving him the appearance of a defeated boxer), we were hopeful that the appliance would begin to reduce Riley’s symptoms and allow him to participate more fully on our family vacation.

Monitoring the Valves in his heart- Right and Left Ventricles

Dr. R tweaking the appliance, using the ultrasounds, x-rays as a guide 

First try with the appliance in his mouth

A friend that I work with offered us the use of her families’ vacation home on Salt Spring Island. It would not be an exaggeration to say that we underestimated this generous gift and as a result we were gobsmacked by the spaciousness, tranquility, and natural beauty of the place. A magical, moss-covered, country road (appropriately named Seclusion Lane) delivered us to a house of “glass and light” perched high on a rocky bluff. Thick, wooden beams, and floor-to- ceiling windows, afforded us with breathtaking views of Trincomali Channel, Galiano Island, and in the distance, the snow-covered, volcanic dome of Mt. Baker. What force of imagination built a place in such harmony with rainforest, ocean, and sky?  Enveloped by the stillness and vastness of the place, one was left feeling simultaneously expanded and insignificant. Into this sacred space we arrived exhausted and buoyed up by anticipation.

The beginning of our vacation exceeded our expectations. Riley’s symptoms lessened in severity and the appliance was having a positive impact. We lounged on the wrap-around cedar deck, watched ships sail by, listened to otters cavorting near the shoreline, read, napped in a hammock, went for gentle walks, introduced ourselves to the resident bald eagle and capped the days off by watching the sunset and stargazing in the hot tub! 

Riley also felt strong enough to hike over uneven ground to a place called “Nose Point” where we gazed childlike into tidal pools filled with purple and pumpkin-orange starfish, sea anemones and spiny urchins. With glee, Riley exclaimed “I am on a real hike and back at the ocean’s edge!” On a subsequent day we sat together on a white-shelled beach near Ganges as the wind rustled the Arbutus leaves and children frolicked in the frigid, crashing surf.

First Hike in 4 years

If only I could keep these beach-side memories close when circumstances change. By the end of the first week, Riley began to decline and as the redness and burning in his face increased, his energy decreased proportionally. Clearly he had “tanked” and the progress hit a setback. After several phone calls to Tacoma, Christine and Riley boarded the ferry and drove to Tacoma to have him re-assessed and the appliance adjusted. Evan hung out with his musical Aunt Pierann in Vancouver for a couple of days, and I stayed on Salt Spring pedalling my anxiety and disappointment up and down the narrow, winding, island roads. At least the lavender fields, crisp ocean breeze, and lush vineyards, offered some good cheer.

 A couple of days later, we reunited again on the island just in time to witness a full, burnt-orange moon light up the ocean! Perhaps the moonlight was a harbinger of better things to come, as the day after proved to be one of our most memorable. 

My cousin Murray and his nephew Bryn picked us up in Ganges and ferried us back to Pender Island for a mini-reunion with relatives. For Riley it was a wonderful opportunity to see family he had lost touch with during the depths of his illness. We arrived in time for a succulent, outdoor brunch consisting of:  ice cold Piper’s Pale Ale, local steamed mussels, crab, barbecued salmon, a medley of salads, desserts, warm conversation and laughter!  We basked in the sunshine, soaked up the oceanfront view and remained long enough to witness the sun’s slow decline. Riley’s energy lasted and he was able to visit and enjoy good food and company. Just when we thought we’d experienced the perfect day, someone noticed a cluster of boats idling together along the horizon. Upon closer inspection, we could make out the distinct black dorsal fins, and exhale spouts characteristic of a pod of Orca whales! Clambering into Murray’s boat we managed to maneuver ourselves into a position where we could cut our engine and drift along, watching mesmerized as the whales arched gracefully towards Active Pass. We returned to Salt Spring at dusk, satiated with rich memories.

After our island retreat, Riley and Christine returned to Tacoma for a week of follow-up appointments and the next set of adjustments to his appliance. Since returning to Calgary we have witnessed Riley’s overall energy increase, his sense of humor re-emerge (watching old “Faulty Towers” episodes and doing his own stand-up routine with foreign accents) and seen a reduction in his facial redness and heat. We have also endured a number of discouraging days where Riley has plunged back to a place of discomfort and lethargy.  We have been told that these fluctuations are to be expected, as the appliance gradually reshapes his cranial structure. Over time he is expected to have longer periods of relief and fewer setbacks.  Despite this reassurance, we are impatient at times with the ongoing complexity and expense of his treatment. It is difficult to determine how many visits to Tacoma and Kansas will be needed in order for Riley to continue progressing.  

Christine and Riley embark on their next trip to the USA on Sunday, September 8^th.  Your continued support and prayers are greatly appreciated. 

From summer with love, 

The Lindbergs

 “The world breaks everyone and afterwards many are stronger at the broken places.”

           
                                                                               Ernest Hemmingway