Saturday, November 17, 2012

DAYS OF MIRACLE AND WONDER


Winter has drifted into town but despite shorter days and an early dusting of snow, a few golden leaves cling tenaciously to the branches outside the window; a memorial to our prolonged summer.
As many of you know Christine and Riley have been away for over a month now, attending a medical clinic in Wichita, Kansas.  Having heard a number of encouraging reports about the Hansa Centre and its’ treatment philosophy from other Lyme-sufferers, and after consultation with Riley’s medical team, they left Calgary with a mixed bag of trepidation and cautious optimism...no Yellow Brick Road to follow and no promise of a wish-granting wizard. Fortunately, unlike the fraudulent “puppet king” of OZ, the Kansas clinic and its’ staff have more than lived up to their reputation.

Remarkably, within a few days of commencing treatment, Riley reported a reduction in pain and a loosening of his facial paralysis. Under the sage-like care of the doctors and staff, he began speaking in short sentences using a “normal” voice instead of the whisper he had resorted to for two years! Riley also stood up and began walking for the first time without support!  To put this in perspective, when they arrived in Kansas, he had been entirely wheelchair bound except for one short, heavily assisted, shuffle to the shower each day. 

Initially it was difficult to trust these changes...anticipating a regression or worsening of symptoms. If we allowed ourselves to believe Riley was actually improving...what then?  Could we afford this kind of vulnerability? Imagine for a moment you are in a killing drought and as a daily ritual you hike to a faraway well hoping for water...you select a stone, say a fervent prayer and drop the stone into the inky black depths, you hold your breath and wait for what feels like an eternity, only to hear the empty clatter of the stone as it hits rock bottom. You repeat this ritual unsuccessfully for years…until one day you drop another stone half-heartedly into the well and as you turn in haste to leave you hear what sounds like a splash; shock and disbelief follow.  Cautiously you try again and there it is…a splosh, a splash…a miracle…and then the tears come!  Faith, however, is the belief that the water will still be there tomorrow.

The water in the well continues to flow,  To our great amazement, Riley continues to progress. The chest, bone, and joint pain that plagued him continuously for three years is now gone!  When they arrived at the clinic on October 11th, Riley listed over 40 symptoms in varying degrees of intensity. 18 of those symptoms are gone, and many of the others are decreasing.He is speaking conversationally, and the decrease in his facial paralysis has allowed him to begin chewing morsels of soft food again, and even manage a slight smile at times.

The toxicity in Riley’s brain has been reduced...”my brain feels like it is starting to wake up and the synapses are firing again”.  In addition, on October 31st, Riley phoned to wish us a “Happy Halloween” and then in an excited voice told me that he had been walking with a straight back and swinging his arms without any assistance!  Shortly after this Christine sent a video of Riley walking slowly but purposefully down the halls of the clinic; breathless and with tears streaming down my face, I hit the replay button over and over again…”my son…my beautiful son…walking again…so tall…thank you God…he’s coming back!”

It’s difficult to describe the elation I felt watching the video of Riley navigating the halls of the clinic on his own two feet.  I have not been that captivated watching someone walk since the age of seven when I witnessed the grainy, black and white images of Neil Armstrong leaving the Lunar Module and stepping onto the moon for the first time; “That’s one small step for man, one giant leap for mankind”. This moonscape now pales in comparison to the sight of my 19 year old, bed-ridden son, moving through his world without a wheelchair or a walker!

     These are the days of miracle and wonder
      This is the long distance call
      The way the camera follows (Riley) in slo-mo...
      And don’t cry baby don’t cry
      Don’t cry...

              (Excerpt from Boy in the Bubble by Paul Simon)


                                   Riley on his 19th birthday- a very joyful day in Kansas!


                                                Riley visiting with his cousin Krystal


The road to restored health for Riley still appears long and daunting at times, but we are joyfully celebrating every recovery milestone. The brilliance of Dr. Jernigan, and the compassionate care of the staff at the Hansa Centre have added fuel to Riley’s determination to return to full health. Days at the clinic are full and tiring for Christine and Riley, but also rich and rewarding. Without the prayers, kind thoughts, and financial support we’ve received, however, none of this would be possible. So it seems only fitting to leave you with these words from Riley:

“Hello everyone... just wanted to say thank you so much for all of your thoughts and      
prayers and good wishes. I miss you all so much and I’ve been thinking and praying
for all of you every day. Thank you so much and love you all!”

With thankful hearts,
Terry, Christine, Riley and Evan


                                            Happy times with our Riley....pre-Lyme!!
                             Dreaming of a time when he can take hold of life again and soar!!
Hiking in the Rockies


Enjoying the View

Lake O'Hara


It's Fun to Dream....thanks Uncle Ian- London, 2008



At the ODR (Outdoor Rink for you non- winter types)

                                             Outside Buckingham Palace- Summer 2008





9 comments:

  1. We got all the way to the part where you talked about Riley walking.. and then I couldn't read it out loud to Charlie anymore. He said "keep going." and that's what we say now to Riley and the Dr's. Keep going. It's just incredible how strong Riley has been .. how full of faith that that stone WILL splash and his mom has .. well, there are no words. We love you all.

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  2. Yes, incredible and encouraging news. Susan and I rejoice with your family at this measure of grace and hope for continued strength for all.

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  3. Thank you God for faith and recovery. Thank you doctors and nurses for finding something that fights such a terrible disease. Thank you Evan for being brave while watching your brother in pain. Thank you Terry and Christine for surviving the anguish every moment of every day. Thank you Riley for showing us the face of courage and hope.

    As we roll into US Thanksgiving, Riley's news will definitely be my answer to the question of "What are you most thankful for this year?"
    xoxo

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    1. Thanks Karen for your note of thanks and support. You have been so great to stay connected and hang in there with us from afar. A comment you wrote awhile back got deleted and we only got half the message- about Ethan and his encounter with a tick....really don't know what happened so can you email and tell me the story?? happy thanksgiving from Kansas!!!!!

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  4. Amazing news ... and answered prayers. The prayers will continue to flow and we trust that the support from home will continue to encompass Riley and your family through this all. Your family shows unbelievable faith and love. We pray for continued good news.

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  5. Such great news! As someone from near Calgary who has also seen their teen suffer from Lyme (but with psychiatric symptoms, starting in 2008), I feel your pain a bit. Hang in there; there will probably be valleys yet, times of regression, but there is hope. Our daughter has been free from medication and symptoms for over a year, and will graduate from high school this school year. I hope and pray that you will be able to report something similar in time.

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  6. So glad to hear words of hope. It has been two years of your living through the bleakest of times, and reading the posts, I am awed by the faith and strength of Riley. Tomorrow is American Thanksgiving, and I hope it continues to be a day of progress.

    Much Love, Joan, Vern, Dave, and Daniel

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  7. Hi..I've followed Riley's story for a couple of years now. I'm so happy to hear about this incredible improvement.

    I'm similarly sick..I've been looking into the Hansa Center for a long time, but never could quite figure out what is was about, if they dealt with people as sick as me (not as sick as Riley, but close), things like that. I know you more than have your hands full, but if you ever have any opportunity to communicate with me, I would really appreciate it. I've pretty much lost everything in life, and this incredible thing that is happening to you...well, it's very hopeful. my email is mshvan@gmail.com.

    If you don't have the time, or would rather not, I do understand. I really hope Riley continues to improve and congratulations.

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    1. I have no idea why it posted as unknown..was not trying to be anonymous.

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