Thank You "Navigator Method" for your support of Riley.
He is thrilled to know that friends are supporting him.
Tuesday, April 5, 2011
Riley's Friends....Supporting the Cause
Thank You "Navigator Method" for your support of Riley.
He is thrilled to know that friends are supporting him.
Saturday, April 2, 2011
It Is Spring....I...AM...HERE
If you read the previous blog post, you'll know that we have been in a long drought waiting for a raindrop or two in our parched rain barrel. You'll also know that we view Riley's eventual recovery as a painfully slow process...one drop of water at a time!
We now have a few drops to report.....not a whole bucket of water into the rain barrel...but definitely a drop or two.
Riley had some encouraging words (whispered to me) a couple of weeks ago....he said he can't completely explain it, but he feels he is slightly more "here". He can't pinpoint exactly when his brain left but it seems to be a little bit back- he feels a bit more present instead of on auto pilot.
He feels as though his brain has been deep inside a cocoon and it is now peeking out a bit, and that he "is back"....in his body.
"Before I felt my body and my soul, but they were separated...far apart, but now they feel back together- connected....and now my thoughts are right there...right behind my eyes. Before they were there but off in another universe....and I had to go so deep to access them. I had thoughts but they were so distant. Now they are right there...so close.""
He looked around the bedroom he has been in and said that the first 6 weeks he wasn't even aware of his surroundings but now is noticing what is in the room.
We view this "peeking out" of his brain as a tiny bit of encouraging news. Unfortunately what also comes with this increased mental awareness and reconnection back to his body, is the realization that he disconnected for a reason- in part, his brain "checked out" because the pain was (and still is) unbearable and unrelenting...the slight increase in brain function has not decreased any of his physical symptoms.
Riley has learned to go deep within his soul to deal with the incredible physical pain he endures every minute. He said, "Mom, I just want my brain back and to not be so startled by everything all the time...I hate being in this ultra sensitive state...it makes me want to stay a turtle in a shell and not come out because its too hard...but my lust for life is still there, as strong as ever...waiting in the shell while the storm goes on outside".
The overwhelming startle he feels from every movement and noise is still very intense, but if this would subside even slightly, he could imagine taking in the world again in very small bits.
In an email, a friend asked me to describe what we mean by "startle"...it's so hard to picture what this is actually like for Riley. An example:
From his bed when he opens his eyes, there is a set of sliding patio doors that look out on to a beautiful view of trees and the numerous birds that inhabit the garden.
If he opens his eyes and unexpectedly sees the branches of the trees swaying in the wind or a bird flies past the glass doors...he says it feels like a tornado is swirling in his brain...and he begins to sweat, his eyes open wide as if being chased by an enemy, and he feels as if his head might explode.
If we move too quickly in the room, brush his skin when we come near, or he hears an unexpected noise...like the bedroom door, or a voice outside his room, he said it feels like he is being electrocuted.
This extreme sensitivity to sound and movement is one of the worst symptoms for Riley, as he normally is a very tolerant and easy going guy.He feels tortured by this and hates that the rest of us have to be so careful.
The trips to medical appointments are excrutiatingly difficult...the real world is swirling past and leaves him absolutely exhausted and depleted for several days after.
The treatment regimen for the babesia infection has been brutal. With this treatment comes a lot of emotional rawness (commonly reported by patients undergoing this treatment). We have had many hard days swirling in emotional upset and physical pain. Sometimes I lay beside him most of the day trying to support him through this turmoil. He wants to talk, but nothing makes sense, then everything makes sense but he loses his words completely, tears come, sweat comes and then physical exhaustion.
Together, Riley and I have been meditating on the words given to me by our dear friend Dale (who visited here recently)....I...AM...HERE.
During Dale's visit I walked with him to a bench I discovered tucked into a hillside just minutes from our house. There he taught me a meditative prayer... reciting the words....I...AM...HERE.Through tears, anxiety and fretful breath, I could feel that.... I am here, God is here, Riley is here, all of you are here. I shared this meditation with Riley and together we have been reciting those precious and simple words...repeating them as a reminder of life and hope.
Terry and Evan's March 26th visit
After over a month apart, I crawl carefully into bed with my dear Riley and without speaking I curl up beside him. He methodically places his hand over mine, and silently we lay together almost motionless for what feels like an hour. At one point he opens his hazel eyes a peep to acknowledge me and a hint of a smile graces his mouth. His eyes close and I listen to his labored breathing and watch as his eyelids begin to twitch involuntarily. I survey his beautiful face...the gentle curve of his chapped lips, his slender nose and the myriad of endearing features that were present at his birth and remain even in his infirmity. Tears wet my cheeks, my nose runs, and I pray for the return of his warm smile, infectious laughter, and enriching company.
Despite the fact that Riley is both weaker and in more pain than on my last visit, he also feels less vacant and more alive somehow. Riley seems more conscious and he has stated on several occasions "I am here".
I remind myself to see this as a sign of hope despite being witness to his continued weakness and suffering. Riley's neurological specialist has given him an exercise where he has to touch his thumb on each of his hands to each of the hands' fingertips, in succession, two times. I watch as he sweats with concentration and exertion to complete what should be a simple task...he succeeds but it takes almost two minutes to complete!
Fortunately Riley has a deep faith and a strength of character that will not be deterred by whatever is required of him to get better.
For those of you who tell us you feel impotent and at a loss to assist us in our struggle with Riley's illness, please be assured that your words, deeds, and prayers are at work. Christine has told me on more than one occasion, when Riley is at his worst, and she feels overwhelmed, alone, and distraught, the right words just come to her. Calm words, that soothe Riley and lift broken spirits. These are the words from all of you...whispered and spoken lovingly from places near and far.
Outside the window California has begun to burst with bluebird skies and temperatures in the high 20s. Flowers erupt and perfume fills the air. My brother Grant took Evan and I up Mt. Diablo where you can see for miles and we were able to soak in the beauty of Spring. Now we wait patiently and trust that more raindrops are on the way and that Riley's barrel will once again be filled. In the words of Bruce Cockburn: "...So how come history takes such a long, long time,
When you're waiting for a miracle..."
We now have a few drops to report.....not a whole bucket of water into the rain barrel...but definitely a drop or two.
Riley had some encouraging words (whispered to me) a couple of weeks ago....he said he can't completely explain it, but he feels he is slightly more "here". He can't pinpoint exactly when his brain left but it seems to be a little bit back- he feels a bit more present instead of on auto pilot.
He feels as though his brain has been deep inside a cocoon and it is now peeking out a bit, and that he "is back"....in his body.
"Before I felt my body and my soul, but they were separated...far apart, but now they feel back together- connected....and now my thoughts are right there...right behind my eyes. Before they were there but off in another universe....and I had to go so deep to access them. I had thoughts but they were so distant. Now they are right there...so close.""
He looked around the bedroom he has been in and said that the first 6 weeks he wasn't even aware of his surroundings but now is noticing what is in the room.
We view this "peeking out" of his brain as a tiny bit of encouraging news. Unfortunately what also comes with this increased mental awareness and reconnection back to his body, is the realization that he disconnected for a reason- in part, his brain "checked out" because the pain was (and still is) unbearable and unrelenting...the slight increase in brain function has not decreased any of his physical symptoms.
Riley has learned to go deep within his soul to deal with the incredible physical pain he endures every minute. He said, "Mom, I just want my brain back and to not be so startled by everything all the time...I hate being in this ultra sensitive state...it makes me want to stay a turtle in a shell and not come out because its too hard...but my lust for life is still there, as strong as ever...waiting in the shell while the storm goes on outside".
The overwhelming startle he feels from every movement and noise is still very intense, but if this would subside even slightly, he could imagine taking in the world again in very small bits.
In an email, a friend asked me to describe what we mean by "startle"...it's so hard to picture what this is actually like for Riley. An example:
From his bed when he opens his eyes, there is a set of sliding patio doors that look out on to a beautiful view of trees and the numerous birds that inhabit the garden.
If he opens his eyes and unexpectedly sees the branches of the trees swaying in the wind or a bird flies past the glass doors...he says it feels like a tornado is swirling in his brain...and he begins to sweat, his eyes open wide as if being chased by an enemy, and he feels as if his head might explode.
If we move too quickly in the room, brush his skin when we come near, or he hears an unexpected noise...like the bedroom door, or a voice outside his room, he said it feels like he is being electrocuted.
This extreme sensitivity to sound and movement is one of the worst symptoms for Riley, as he normally is a very tolerant and easy going guy.He feels tortured by this and hates that the rest of us have to be so careful.
The trips to medical appointments are excrutiatingly difficult...the real world is swirling past and leaves him absolutely exhausted and depleted for several days after.
The treatment regimen for the babesia infection has been brutal. With this treatment comes a lot of emotional rawness (commonly reported by patients undergoing this treatment). We have had many hard days swirling in emotional upset and physical pain. Sometimes I lay beside him most of the day trying to support him through this turmoil. He wants to talk, but nothing makes sense, then everything makes sense but he loses his words completely, tears come, sweat comes and then physical exhaustion.
Together, Riley and I have been meditating on the words given to me by our dear friend Dale (who visited here recently)....I...AM...HERE.
During Dale's visit I walked with him to a bench I discovered tucked into a hillside just minutes from our house. There he taught me a meditative prayer... reciting the words....I...AM...HERE.Through tears, anxiety and fretful breath, I could feel that.... I am here, God is here, Riley is here, all of you are here. I shared this meditation with Riley and together we have been reciting those precious and simple words...repeating them as a reminder of life and hope.
At some point every day Riley whispers to me, "I am here and I love you". I say to him daily "Riley you are here, YOU are not lyme disease, YOU are Riley. You are here".
 |
| "I...AM....HERE" bench |
 |
| View from the Bench |
It is Spring...
Last week Riley woke up and on the commode(toilet) beside the bed...he gestured for me to come close so he could whisper something:
"Mom- its Spring."
We had been describing his illness as a very long winter, with signs of Spring hidden deeply beneath the surface. Together we were waiting for small signs of Spring...so I thought he was referring to that .I said- "You mean you feel Spring in your soul?"
"No it's Spring" he whispered."Yes Spring is coming Riley" I replied
"NO- today is the first day of Spring Mom- it is March 21st." ""OH...of course" I humbly replied.
Riley counts the date off in his mind every day and he knew that it was Spring before I did! :)
Last week Riley woke up and on the commode(toilet) beside the bed...he gestured for me to come close so he could whisper something:
"Mom- its Spring."
We had been describing his illness as a very long winter, with signs of Spring hidden deeply beneath the surface. Together we were waiting for small signs of Spring...so I thought he was referring to that .I said- "You mean you feel Spring in your soul?"
"No it's Spring" he whispered."Yes Spring is coming Riley" I replied
"NO- today is the first day of Spring Mom- it is March 21st." ""OH...of course" I humbly replied.
Riley counts the date off in his mind every day and he knew that it was Spring before I did! :)
BENCHES
Since our last blog several of you have emailed us your "favourite bench stories"...or told us of a bench you will soon visit and while there you will think of or pray for Riley. Keep sending us these stories...they have been inspirational.
 |
| A bench moment on hike near Canmore |
Terry and Evan's March 26th visit
After over a month apart, I crawl carefully into bed with my dear Riley and without speaking I curl up beside him. He methodically places his hand over mine, and silently we lay together almost motionless for what feels like an hour. At one point he opens his hazel eyes a peep to acknowledge me and a hint of a smile graces his mouth. His eyes close and I listen to his labored breathing and watch as his eyelids begin to twitch involuntarily. I survey his beautiful face...the gentle curve of his chapped lips, his slender nose and the myriad of endearing features that were present at his birth and remain even in his infirmity. Tears wet my cheeks, my nose runs, and I pray for the return of his warm smile, infectious laughter, and enriching company.
Despite the fact that Riley is both weaker and in more pain than on my last visit, he also feels less vacant and more alive somehow. Riley seems more conscious and he has stated on several occasions "I am here".
I remind myself to see this as a sign of hope despite being witness to his continued weakness and suffering. Riley's neurological specialist has given him an exercise where he has to touch his thumb on each of his hands to each of the hands' fingertips, in succession, two times. I watch as he sweats with concentration and exertion to complete what should be a simple task...he succeeds but it takes almost two minutes to complete!
Fortunately Riley has a deep faith and a strength of character that will not be deterred by whatever is required of him to get better.
For those of you who tell us you feel impotent and at a loss to assist us in our struggle with Riley's illness, please be assured that your words, deeds, and prayers are at work. Christine has told me on more than one occasion, when Riley is at his worst, and she feels overwhelmed, alone, and distraught, the right words just come to her. Calm words, that soothe Riley and lift broken spirits. These are the words from all of you...whispered and spoken lovingly from places near and far.
Outside the window California has begun to burst with bluebird skies and temperatures in the high 20s. Flowers erupt and perfume fills the air. My brother Grant took Evan and I up Mt. Diablo where you can see for miles and we were able to soak in the beauty of Spring. Now we wait patiently and trust that more raindrops are on the way and that Riley's barrel will once again be filled. In the words of Bruce Cockburn: "...So how come history takes such a long, long time,
When you're waiting for a miracle..."
 |
| In the capable care of Terry and an IV nurse....Christine and Evan escape to the beach for a few hours....Riley is in our every breath as we write him a note in the sand |
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| Evan waving to the Paparazzi |
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