BOOK LIST for the Bartonella Birthday Boy

October 26, 2011

Two years ago today, Riley came home from a typical Grade 11 day complaining of flu-like symptoms and feeling totally exhausted.

It was two days before his 16^th birthday and the start of a very long, painful and complex journey with Lyme disease.

Two days from now, Riley will turn 18 ….a birthday that looks so much different than any of us could have ever imagined.  He will be 18 going on “old soul”.

As a family we keep talking about how the journey of illness teaches in a way that few other life experiences can….some are welcome lessons and others we would rather pass by, but no matter what Riley is growing wiser and stronger….high school diploma or not.

The bits of progress that we enthusiastically reported the last couple of months are being masked by an intense flare-up of symptoms the past 2-3 weeks. Riley is now suffering from increased muscle weakness, facial and tongue swelling (swallowing, whispering and smiling are hard again), tingling and burning sensations, abdominal pain, brain fog and agitation, burning eyes (acid on his eyeballs), hot and cold sensations throughout his body, night sweats, very tender foot soles, and insomnia. In addition, he frequently gets body shakes… as if he has just come out of a glacial river- teeth chattering and all. Sometimes these shakes are evoked by a surge of emotion, positive or negative, such as a great golf play on TV, or overexertion during a whispered conversation, sitting too long after his bath/shower, or talking to or about someone or something that means a lot to him

Part of this intense flare-up is the result of a new treatment protocol to “attack” the co-infection called Bartonella.  For a brief time several months ago, Riley was taking medications to address this infection, but he had to stop because the bacterial load from the Lyme bacteria was so severe that his body couldn’t deal with both treatments at once.

The symptoms that Riley has reported as being the worst these past couple of months are a sign that the Bartonella infection is raging. Bartonella is known to cause many of the symptoms that Riley is experiencing, especially the intense abdominal and neurological issues.  He said to me the other day, “Mom, it feels like my brain has been ransacked. There’s been a ‘break and enter’ and everything has been turned upside down- furniture knocked over, piles of paper thrown everywhere, the whole house in turmoil… it’s a mess, but luckily they didn’t take anything. I just can’t find things easily”. This is Riley’s brain- he tries to finish a sentence and loses the word (has to go looking for it in his ransacked brain).  He also experiences agitation - spontaneous emotions that seem to come out of nowhere, and he has also been really sensitive to touch again. 

In a recent neurological QEEG assessment, Riley’s brain was described as a computer where the hard drive has everything properly stored, but it’s frozen and looping in circles…it needs to be rebooted and cleaned up in order to function fully again.  The good news is that the hard drive is there and gradually being restored. We are starting some further neuro and physiotherapy in the coming weeks, as he is able.

Riley’s brain function continues to be better than it was several months ago. The severity of startle and anxiety caused by sensory input has remained toned down enough that he continues to be able to watch golf and some soccer on TV (still can’t handle shows or commercials -too fast and loud). The biggest thrill for him has been the ability to listen to audio books on his iPod.  He is going through 2-3 books per week!

This is where all of you come in…Blog Reader BOOK PICKS.

Just like the “staff picks” at Indigo- we are looking for our “Blog Reader Picks”.

On Riley’s birthday this Friday, we would like to present him with a book list of picks from all of you… books you have loved and why this is so. Then over the course of the next few weeks we can download some of these books for him and he can think of you as he listens to your selection. J

So all you readers out there- send us the name of a favourite books-new and hot, oldies but goodies and we will pass these onto Riley. If you have time please send him one or two sentences describing why you liked a particular book.

If you haven’t checked out audiblebooks.com…it is a great source for audio books- this is where Evan downloads all of the books for Riley to listen to on his iPod. He’s not at the KOBO or Kindle stage yet, because reading for him is still too difficult, and he is definitely not able to hold a real book- so Hurray for iPods (thank you Steve Jobs!!!).

Look forward to hearing from you when you are able….post book pick as comment on blog or email is great.

Christine

Thanksgiving Rumblings by Terry and Christine

                   Giving Thanks in the Midst of Chronic Crisis

Backyard Fall Beauty...captured by Evan

Thanksgiving- a favourite time of year for me…both the season and the celebration.

This year, however, there is heaviness in my heart that has settled in and is forcing me to  look anew at just what “thanks-giving” really means.

My life has been shaken to the core this past year with the death of both my parents and Riley fighting for his life. 

I have been asking myself- what truly does it mean to give thanks…am I only able to have a grateful heart when life is going well, or is it something deeper that emerges during  times of struggle and pain?

How does one live with gratitude in the midst of chronic crisis?

When Riley was scary sick last winter and we feared we were losing him- we were in “crisis”. All the day to day busyness came to a screeching halt and we went into survival mode to deal with the crisis before us - Me with Riley in California, and Terry and Evan in Calgary, and all of you showing up in a million ways to support, pray, cook, email, drive, cry with, pray, cook, drive, cook some more, phone, drop off notes, send money, pray some more……and, and, and the list goes on.

Small bits of progress that were not even detectable at first began to emerge for Riley…not enough to say he was regaining the life he once knew- but enough to feel like we could breathe a little deeper.

Now we are back in Calgary.  Riley is making small gains, ones that are huge compared to the state he was in for months while in California…so we are thankful, very thankful.  We are seeing our Riley emerge from a coma-like state and respond bit by bit to the world around him.

However, the “crisis” lurks and the “chronic” state of his ill-health is still slapping us in the face at every turn.  This truth is hard- really, really hard – for us, for Riley, and I imagine for all of you who have walked alongside us for so many months.

Every Lyme patient and family we have come to know- experiences this “chronic crisis” on a daily basis.  There is nothing easy about Lyme disease- not the diagnosis, the treatment options, the medical obstacles or the life it robs from those who live with it.  There are no quick fixes or miracle recoveries with Lyme…just hard day to day slogging through the myriad of treatments, progresses, setbacks, and the hideous pain and suffering.

Does this get me down? Of course! 

Do I cry most days about something? Absolutely!

Am I sad and grumpy and hard to live with? On a regular basis! 

Do I long for the day when we are four at the dinner table again, and Riley can brush his own teeth, read a book, eat solid foods, walk to the bathroom on his own, or pick up his iphone and text a friend about Friday night plans? With an aching heart everyday!

In the midst of this, however, what keeps emerging is a deep sense of gratitude for all that we have been given.
Yesterday at church….John, our minister, was reflecting on Thanksgiving.

He put into words, some of the thoughts and feelings I had been mulling over for awhile.
“Thanksgiving isn’t a “should”, it surfaces and surprises spontaneously. It is being caught off guard by a deep sense of gratitude and awe when perhaps it isn’t warranted or expected-it isn’t something we can force but something rather that just is”.

In the midst of this “chronic crisis” called Lyme disease…I find myself filled with gratitude- not because it’s easy, not because Riley’s no longer sick, not because grief is absent, but just because.  A surprise.

I hope you find yourselves surprised by gratitude...Happy Thanksgiving.
Warmly,
Christine

Fall Grasses In Edworthy Park....Photo by Evan



Fall Beauty....by Evan

 Terry’s Fall Reflections

An invigorating Autumn gust rattles the skeleton trees…leaves dance, swirl, settle, scatter, and take flight. Winter will soon drape herself across the landscape. Fall, a favorite season of mine; a time for reflection and new beginnings. Butternut squash soup, swaying sunflowers, hikes among the Larches, well-worn sweaters, apple crisp mornings, frost on the tent fly, fireside books, and the bounty of the harvest shared among family and friends..

                                            Early Fall from Eiffel Peak

This year, however, I carry with me the dead weight of sadness, and even my dreams are unsettling. In one such nightmare, I lie airborne on a collapsed parachute watching helplessly as the ground rushes towards me at an alarming speed. In another, I crawl gingerly along a wooden roof beam that splinters, spilling me violently to the ground. Although I am not certain of the meaning behind either of these visions, intuitively I sense they are related to Riley’s chronic illness and the fact that he will be spending another birthday (his 18^th) bedridden. Despite ongoing, necessary but expensive treatment, there is no immediate end yet in sight to his horrific suffering. At times I want to shake my fists in the air and scream at the top of my lungs: “THIS IS SO #@!!@#! UNFAIR! ENOUGH ALREADY!”

I think of an excerpt from PSALM 31: “Be merciful to me, O Lord, for I am in distress; my eyes grow weak with sorrow, my soul and my body with grief…”

A few weekends ago, on a short retreat with a friend to Denman Island, B.C., I lay on my back on the beach, eyes closed, sunlight on my face, listening to the gentle lapping of the ocean and the deepening of my breath. A smile found my face and a feeling of contentment flooded over me. Then just as unexpectedly, my body convulsed and a wave of tears emerged; a pocket of grief surfacing.

                               Helliwell Provincial Park, Hornby Island, B.C.

Our bungalow has become far too quiet these days and the familiar noise of our busy family remains a distant memory. It would be so easy to throw a rather large ‘Pity Party’, were it not for the unshakeable faith of Riley himself. One morning as I tiptoed into his room heavy-hearted, his eyes opened and I asked him intently how he was doing. To my astonishment, he replied: “Dad, I wake up each morning with a sense of delight…look at the things I can do now that I couldn’t do last Fall...I am listening to stories and watching soccer on TV…I can move the covers on my bed!” Despite daily pain, weakness, and the growing realization that his friends are moving on while his dreams and aspirations sit unopened, he remains, as always, optimistic. Riley’s gentle, kind spirit and gratitude in the face of long-suffering humbles me.  I hear his laughter and marvel at Riley’s heartfelt smile following a postcard or message from a caring friend.

Then there are the countless acts of kindness that continue to be bestowed upon our family…meals left on our porch,  generous donations, flowers, prayers, and compassionate words…so much to be thankful for! To all of you who remain faithful to us in our arduous battle with Lyme, we are indebted. You have picked us up when we have stumbled and carried us when our weary legs and hearts have faltered.

Thanksgiving blessings to you all, Terry