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!