The last month has been extremely difficult for Riley. In response to a flare up of his symptoms, we have withdrawn a little more from the world. Although I dutifully set our clocks back an hour, I am now having second thoughts. Where do they keep the soft light that used to lift my spirits and shepherd me safely to and from work? Some days I cannot bear to leave and later dread returning. I fill my coat pockets each morning with morsels of hope and anticipation, but they slip far too easily through unseen holes and litter the barren ground behind me. Perhaps the lean winter birds peck at this trail of crumbs and it fuels their migration?
On the 28th of October, Riley turned 18. Although I had long anticipated this milestone, I was not prepared for the ensuing sadness. It was as though someone had peeled off my skin and left me bracing against a bitter wind; watching helplessly as chronic illness stripped away Riley’s party… cake toppled, friends scattered, beer spilled, cars overturned, girlfriends departed, university crumbled, and robust health cart-wheeled into oblivion. How do you celebrate your son’s transition to adulthood when he lies there like an emaciated and unstrung marionette, unable to walk, eat, or shower, without assistance…or when he mentions that he’s surveyed his entire body, unable to locate one area free of pain!
Just eighteen and already Riley is a veteran of bitter winds. Not one to dwell on his losses, however, Riley has sought shelter in the love and generosity of others, deepened his spiritual roots, and learned to rejoice in life’s simple pleasures. At times I imagine he is enrolled in the College of The Saints
“What lies behind us and what lies before us are small matters compared to what lies within us.”
Had you sat with us by his bedside, on the eve of his birthday, you would have witnessed part of an ongoing miracle. Gratitude shone from Riley’s eyes and a radiant smile met us as we bestowed simple gifts upon him and read birthday cards from loved ones. His eyes widened as we shared with him the abundance of Blog Reader Book Picks from so many of you. We took turns reading to him the extensive list of favorite books and the colorful descriptions people had given for making their selections. Riley was absolutely delighted to know that people were thinking of him and that he could now download and treasure audio-books that had inspired others! Now with each book he listens to, he pictures the person who endorsed it and imagines them enjoying it with him.
From his bedroom window, Riley can only focus on a few barren trees and jigsaw pieces of sky. When he closes his eyes to listen to a book, he is transported above his sickly body to all parts of the world, from medieval to modern times, British Columbia to India India
People frequently ask us to let them know what we need…a generous but difficult question to answer. We need you to walk patiently beside us, to hold on to the morsels of hope when we drop them, to pray for us, to share your own lives with us, to not give up on Riley as he battles this illness, to pull us out when we withdraw from the world, and to continue sending reading suggestions to Riley that will enhance his recovery!
With much gratitude, Terry
