The sun was just beginning to make its appearance. Shades of pink, yellow and orange hovered above the horizon as I looked out over the lake. The morning sky was beautiful and life on the lake was beginning to awake. A family of ducks swirled across the rippling water. I was distracted from the beauty as I heard a small voice call out to me.
It had been two weeks since Josiah's spinal surgery. He was now home in my care recovering. I was just beginning to feel comfortable moving him around and the night before I had actually manged to move him myself for the first time.
Surgery had went well, though Josiah had lost quite a bit of blood. His incision seemed to be healing good and he was asking for pain meds less often. Turning him every few hours was still very important and like a clock he seemed to wake up letting me know it was time. Sleeping next to his bed on a recliner had become my new resting place, making it easier for me to be there for him.
I rolled Josiah over slowly to his side. Swiftly I worked positioning pillows to aide in keeping his body as straight as possible. Tucking him in again I bent in to give him a light kiss on his forehead. Josiah was already drifting back to sleep by the time I curled back into the recliner.
I was so happy to have the surgery behind us. The care that was needed now to meet his needs left me most days drained. But we were managing. With the help of my sister Marie, my brother in-law Bill and my eldest son Zach, we had a system in play that worked.
It seemed I hardly had enough time to shut my eyes and my Josiah was calling for me again.
Tuesday, April 12, 2011
Thursday, March 24, 2011
Overwhelmed with emotions, I search frantically for some way to resist the surrender to the panic and fear I feel growing with in me. Apprehension, provoked by my Josiahs' upcoming spinal surgery. The ominous anger that consumed me years ago when my two younger sons were first diagnosed with DMD once again enervate my strength. Duchenne, again, paralyzing me in my fear.
The months and weeks of awaiting Josiahs' surgery date has now turned into days. As we approach his surgery date I feel my existence tested more than ever. For the first time in seven years I feel the travail of this life threatening disease and my abilities of single parenting. Having never questioned my capabilities to care for my two sons with DMD alone before, I am lost to this new sense of insecurity.
In my heart I am paralyzed with daunting fear I may some way fail in my attempts to be all he needs. In my mind my I know I have no choice but to be the strength he will rely on.
The months and weeks of awaiting Josiahs' surgery date has now turned into days. As we approach his surgery date I feel my existence tested more than ever. For the first time in seven years I feel the travail of this life threatening disease and my abilities of single parenting. Having never questioned my capabilities to care for my two sons with DMD alone before, I am lost to this new sense of insecurity.
In my heart I am paralyzed with daunting fear I may some way fail in my attempts to be all he needs. In my mind my I know I have no choice but to be the strength he will rely on.
Saturday, February 12, 2011
Path ways
I looked out the window today at the heart shaped path a friend had plowed for me the weekend before. The lake descending from my back yard now frozen was bare, except for my heart. I followed the long path from my knee deep snowed covered yard, leading to the shoreline. Then continued, stretching out to the corridor of plowed snow, several yards onto the lake. Alone in my thoughts I let my mind take me back in time. Back to the days when I myself shoveled paths throughout our back yard, before we moved to this lake. Days when shoveling was all that was required of me to allow my two youngest sons the capability to wander through the snow covered yard.
Recalling the laughter and fun we shared together, I smiled to myself. Cody and Josiah would follow each other through the winding maze I created. Cautiously raising each foot at every step. Along the twisting isles they would stop and giggle at the snow creatures I sculpted for their delight. Then somewhere in the pathway they would find me collapsed. Laying, in the snow resting, from all the shoveling. Watching and waiting for them, filled with great joy that I was able to create for them a winter wonderland. Overwhelmed with hope that somehow walking would not be lost. Together, laughing we would tumble in the snow until our fingers and toes would begin to feel the slight sting from the cold.
Looking out today where my friend had plowed, I realized getting my sons out on to the lake would be a task that I could not manage on my own. A mission, even if possible, that would most certainly require the enlisting of more help than just my sister Marie who has become my right hand lately. Scanning the lake and then back to the heart shaped trail, I wondered if my sons ever thought about those memories. The days when they were able to walk in the snow. The winters when going out doors merely required some assistance with dressing and help with maneuvering the stairs. The days when lifting was hardly a concern, a time when when the pathway seemed easier and more accessible. Moments when being a single parent did not seem to challenge my own physical strength so much.
I knew Cody and Josiah remembered walking. It still was not all that long ago. We had just reminisced the day before, recalling memories of walking in the old house. we talked about the phase 2 PTC drug trial and the 6 minute walk test Josiah had no problem completing. A Beautiful visual of them out in the snow flashed before me. I envisioned the two of them walking as they had in the past following a groomed winter trail, smiling and walking.
Winter had now become somewhat trying on us and often required more assistance than what I was able to provide alone, but we were managing. Only two weeks before we participated in our community out door Winter Fest. Trudging through snow with electric wheelchairs, bundled to soften the effects of a typical wind chill for Minnesota we went dog sledding and enjoyed a sleigh ride. With the help of family we were hardy Minnesotans enjoying winter.
I stared at my carved heart. Its symbolic meaning calling to me. Today might not be the day I get my sons out on the lake to play in the snow. This most likely was not going to be the day I would see some actual difference that PTC was making in my sons lives. All the energy that caring for them demanded of me did not change. We would still have to prepare ourselves and face our fears of Josias' upcoming spinal fusion surgery. But, I was ready to give DMD another fight.I was ready to accept the new challenges that lay ahead. Most importantly, we had been given back an extra glimmer of hope. We were back on PTC. It looked promising. Cody and Josiah were tolerating the medication very well. We would embark on this next phase of our journey with DMD, hoping to be following the pathway to help cure Duchenne.
Recalling the laughter and fun we shared together, I smiled to myself. Cody and Josiah would follow each other through the winding maze I created. Cautiously raising each foot at every step. Along the twisting isles they would stop and giggle at the snow creatures I sculpted for their delight. Then somewhere in the pathway they would find me collapsed. Laying, in the snow resting, from all the shoveling. Watching and waiting for them, filled with great joy that I was able to create for them a winter wonderland. Overwhelmed with hope that somehow walking would not be lost. Together, laughing we would tumble in the snow until our fingers and toes would begin to feel the slight sting from the cold.
Looking out today where my friend had plowed, I realized getting my sons out on to the lake would be a task that I could not manage on my own. A mission, even if possible, that would most certainly require the enlisting of more help than just my sister Marie who has become my right hand lately. Scanning the lake and then back to the heart shaped trail, I wondered if my sons ever thought about those memories. The days when they were able to walk in the snow. The winters when going out doors merely required some assistance with dressing and help with maneuvering the stairs. The days when lifting was hardly a concern, a time when when the pathway seemed easier and more accessible. Moments when being a single parent did not seem to challenge my own physical strength so much.
I knew Cody and Josiah remembered walking. It still was not all that long ago. We had just reminisced the day before, recalling memories of walking in the old house. we talked about the phase 2 PTC drug trial and the 6 minute walk test Josiah had no problem completing. A Beautiful visual of them out in the snow flashed before me. I envisioned the two of them walking as they had in the past following a groomed winter trail, smiling and walking.
Winter had now become somewhat trying on us and often required more assistance than what I was able to provide alone, but we were managing. Only two weeks before we participated in our community out door Winter Fest. Trudging through snow with electric wheelchairs, bundled to soften the effects of a typical wind chill for Minnesota we went dog sledding and enjoyed a sleigh ride. With the help of family we were hardy Minnesotans enjoying winter.
I stared at my carved heart. Its symbolic meaning calling to me. Today might not be the day I get my sons out on the lake to play in the snow. This most likely was not going to be the day I would see some actual difference that PTC was making in my sons lives. All the energy that caring for them demanded of me did not change. We would still have to prepare ourselves and face our fears of Josias' upcoming spinal fusion surgery. But, I was ready to give DMD another fight.I was ready to accept the new challenges that lay ahead. Most importantly, we had been given back an extra glimmer of hope. We were back on PTC. It looked promising. Cody and Josiah were tolerating the medication very well. We would embark on this next phase of our journey with DMD, hoping to be following the pathway to help cure Duchenne.
Lego athletes
Today I decided to stop wondering what it might be like to see Cody shoot a basket during a basket ball game. Or see Josiah hit a baseball and run like the wind to get on base. In stead I took a deep breath and sat down be side my sons as they put together a new Lego kit. I leaned in between them fitting myself in the tiny space between their wheeled chairs. Happily they made efforts to pull themselves a few inches over to allow me space enough to be apart of their fun. Cody eagerly showed me the progress he had made on the building he had created. Josiah quietly worked on the new kit the tooth fairy had left him the night before. I looked around the beautiful Lego room I had created for them. Buildings and vehicles that they had put together lined the shelves. This was the world my sons knew. This was one of their past times they had grown to love.
Marveling at the patience it took to work their weakening hands and arms I leaned over to give them both a little kiss on the head. I watched Josiah look at the directions and search for the correct piece. Cody chatted on about how fast Josiah worked and how proud he was for him. Together we sat, away from the outside world lost in Lego land. My sons were happy, they accepted this was what they could do. I wanted to be at peace with that acceptance. I wanted to embrace all the enjoyment they felt building with Legos. I felt happy that I could give them a place to be creative, a place that they could shine and display there skills. I was so very proud of the abilities they possessed with such little strength. It pained me though knowing that this could and most likely would someday become an impossible task for them. Our friends and relatives pushed and cheered to help their children become athletes and dancers. The world I knew loved stronger and faster. The world we lived in did not know the magnitude of strength it took for Josiah or Cody to build a small structure. Or the concentration it took for either of them to follow instructions. My two younger sons would never have the athletic abilities my friends shared about their own children. They would struggle more each day to use their dying muscles. Inside I was horrified at what was inevitably to come. I knew thinking past today would however take the joy we held on to at this moment away. So Legos was our now. I picked up some blocks asking Cody if I could help make his wall on his house stronger. He smiled at me saying "mom you are good at finding ways to make something be stronger." Hugging him I said "sometimes being strong is all I know".
Marveling at the patience it took to work their weakening hands and arms I leaned over to give them both a little kiss on the head. I watched Josiah look at the directions and search for the correct piece. Cody chatted on about how fast Josiah worked and how proud he was for him. Together we sat, away from the outside world lost in Lego land. My sons were happy, they accepted this was what they could do. I wanted to be at peace with that acceptance. I wanted to embrace all the enjoyment they felt building with Legos. I felt happy that I could give them a place to be creative, a place that they could shine and display there skills. I was so very proud of the abilities they possessed with such little strength. It pained me though knowing that this could and most likely would someday become an impossible task for them. Our friends and relatives pushed and cheered to help their children become athletes and dancers. The world I knew loved stronger and faster. The world we lived in did not know the magnitude of strength it took for Josiah or Cody to build a small structure. Or the concentration it took for either of them to follow instructions. My two younger sons would never have the athletic abilities my friends shared about their own children. They would struggle more each day to use their dying muscles. Inside I was horrified at what was inevitably to come. I knew thinking past today would however take the joy we held on to at this moment away. So Legos was our now. I picked up some blocks asking Cody if I could help make his wall on his house stronger. He smiled at me saying "mom you are good at finding ways to make something be stronger." Hugging him I said "sometimes being strong is all I know".
Friday, February 11, 2011
impact
On any given day someone somewhere is going that extra step to make a difference. Being on the side that so desperately reaches out for the compassion of others, I can not say thank you enough for the generosity of those who give of themselves. Several months ago I spent the day with my two sons afflicted with Duchenne Muscular Dystrophy, along with my sister Marie, helping out at a Lock-up for MDA. Our job was to greet and tell our story to the representatives who came to make donations for MDA. Volunteering for this cause has become a big part of our world and speaking on its behalf is very near and dear to our hearts. While it is not always very easy for my sons Josiah and Cody to attend some events they willingly accompany me on request.
This day at the lock-up was a special time for us to share our story because we are involved personally in research. For the first time in a long time I felt I could talk about Duchenne with hope. My boys sat in their chairs next to me, quiet and feeling quite shy while I spoke about The PTC study my sons were enrolled in. PTC laboratories had enlisted several young boys to part take in a on going study using the drug "Ataluren". Research reports were indicating that Ataluren was showing signs of slowing the progression of Duchenne and in several cases some strength was being maintained. My sons both showed some healthy muscle tissue to be present, which told us something was deffinately happening with in their bodies. We had hope given back to us and that alone gave me the courage and energy to let anyone who cared to listen, learn that research was vital to my sons lives.
Both my sons being extremely shy stayed close to my side remaining very quiet. On occassion responding verbally to hellos or compliments but mostly smiling and nodding through out the day. Cody seemed to be relieved when I finally had no one left new to speak to and announced we could go. We graciously thanked all those who came out to help cure Duchenne. It was not until we headed home that I realized the real impact my openess to speak had. The two people who had the most to gain from hearing me talk were my sons. As I loaded my boys in our van, Cody simply said thank you mom. Surprised I asked why. He told me for not letting him give up on hope.
That night I sat in my room alone thinking about research, the study, my fears of allowing my sons - for the most part to be part of an experiment for this new drug. I thought about my desperation and anger I feel daily from watching my sons muscles waste away. I also thought about hope. I knew we had come a long way in research. Science understood so much more about this disease. But yet a cure for Duchenne still does not exist. However, I was happy my son had hope.
It is now several months later. Much has passed since that day. Josiah has undergone major spinal surgery and has had to relearn to hold his head up and sit unsupported. We continue to move forward even though at times there have been some set backs. I look at my sons and know deep with them is a drive and determination to fight. I believe that we are getting closer to cure and will not give up on my sons. But for the most part I still remain a skeptic to some degree and a hard judge to pass regarding this new drug. I cling to the hope that it is helping. When those low moments happen and we struggle to make sense of why, I turn to my boys. Watching them continue to hold on to their hope lets me know I am doing all the right things.
This day at the lock-up was a special time for us to share our story because we are involved personally in research. For the first time in a long time I felt I could talk about Duchenne with hope. My boys sat in their chairs next to me, quiet and feeling quite shy while I spoke about The PTC study my sons were enrolled in. PTC laboratories had enlisted several young boys to part take in a on going study using the drug "Ataluren". Research reports were indicating that Ataluren was showing signs of slowing the progression of Duchenne and in several cases some strength was being maintained. My sons both showed some healthy muscle tissue to be present, which told us something was deffinately happening with in their bodies. We had hope given back to us and that alone gave me the courage and energy to let anyone who cared to listen, learn that research was vital to my sons lives.
Both my sons being extremely shy stayed close to my side remaining very quiet. On occassion responding verbally to hellos or compliments but mostly smiling and nodding through out the day. Cody seemed to be relieved when I finally had no one left new to speak to and announced we could go. We graciously thanked all those who came out to help cure Duchenne. It was not until we headed home that I realized the real impact my openess to speak had. The two people who had the most to gain from hearing me talk were my sons. As I loaded my boys in our van, Cody simply said thank you mom. Surprised I asked why. He told me for not letting him give up on hope.
That night I sat in my room alone thinking about research, the study, my fears of allowing my sons - for the most part to be part of an experiment for this new drug. I thought about my desperation and anger I feel daily from watching my sons muscles waste away. I also thought about hope. I knew we had come a long way in research. Science understood so much more about this disease. But yet a cure for Duchenne still does not exist. However, I was happy my son had hope.
It is now several months later. Much has passed since that day. Josiah has undergone major spinal surgery and has had to relearn to hold his head up and sit unsupported. We continue to move forward even though at times there have been some set backs. I look at my sons and know deep with them is a drive and determination to fight. I believe that we are getting closer to cure and will not give up on my sons. But for the most part I still remain a skeptic to some degree and a hard judge to pass regarding this new drug. I cling to the hope that it is helping. When those low moments happen and we struggle to make sense of why, I turn to my boys. Watching them continue to hold on to their hope lets me know I am doing all the right things.
Thursday, January 13, 2011
Josiah bent over to pick up a Lego piece that had slipped from his fingers to the floor. I watched silently as his shoulders slumped forward in an awkward tilt. It was becoming increasingly harder for him lately to force himself upright again. He managed and I felt some relief. He was still finding away to continue this ability. It was however, more apparent, the rapid loss of strength he was experiencing. I could feel some anger once again growing with in me as I silently watched him struggle.
I can not remember a time when the words Duchenne Muscular Dystrophy was not in my life. My entire life, consumed of years spent waiting for a treatment, at the very least that would help control the rate of muscle loss. Now I was faced with scheduling surgery for my youngest son Josiah, because scoliosis was aiding Duchenne in this on going losing battle of muscle loss. Spinal Fusion was a new term recently added into our complicated devastating world. My research of the arduous procedure only served to give me more concern, climaxing my fears. But, without surgery fatality looms even more.
Quietly I slipped out of Josiahs' view. It was even more crucial now that I pulled forward strength and hope. Desperately I worked to refocus my emotions on something more positive. But today Hope was not standing in front of me. Reality her very honest cousin echoed in my ears. Her harshness repeating the unrelenting fears I had grown to know so well. Surgery was vital for my beautiful sons life. That same procedure did not come without very real risks, and pain. It was up to me again to find a way to be the strength we would both need to face another battle with Duchenne. Battling seemed to be the some of my existence lately. I felt sad that I had nothing more to offer than my shaken emotions. I felt hurt consume the very depths of my being. I wanted hope. Most of all though, I longed to be comforted to have something, someone, hold me for once.
Lost in my thoughts, I jotted down a few sentences, hoping that would help me release a little of the uneasiness I was feeling. Rereading my words I paused momentarily recalling some of the responses I had received from a few blogs I had posted about my feelings previously. On occasion it seemed that the message I had hope to convey was lost to some. I was offered advice on health care, given suggestions on home improvement and my favorite, hints that I some how was in fact not addressing other issues that pertained to my own physical abilities. For the first time in a long time I felt totally distant from the world. I could not recall writing any blog that resembled even remotely that I was asking for advice or for that matter complaining. Why was it, I wondered, impossible for some to just share my passion? Reality echoed even more, was what I searched for even available to me? Perhaps not in the way I had hoped or expected, but yes, those that could share in my intensity far out weighed the negative. Together with the inspiration I wanted to be for others and the encouragement I received I knew that I had connected in some way to other people.
Today though I felt fear overwhelm me, captivate me into my sea of emotions. I looked for hope to help me feel not so isolated but she stood blankly looking back at me. In order for me to have her I would have to escape from the despair that slowly was beginning to surround me. I knew reality was here for me today.
She was not asking anything from me, or demand that I put aside my pain. She showed me the truth, not a world of fairy tales. I realized, again, the pain and fear I felt would pass. I would face whatever challenges that lay ahead with dignity and pride. I would most certainly not let my sons down. I would as always be a constant source of strength for them and that was something I would never let Duchenne take from us.
Reality, helped me to see what I am capable of, but hope helped me find the courage to run with it.
I can not remember a time when the words Duchenne Muscular Dystrophy was not in my life. My entire life, consumed of years spent waiting for a treatment, at the very least that would help control the rate of muscle loss. Now I was faced with scheduling surgery for my youngest son Josiah, because scoliosis was aiding Duchenne in this on going losing battle of muscle loss. Spinal Fusion was a new term recently added into our complicated devastating world. My research of the arduous procedure only served to give me more concern, climaxing my fears. But, without surgery fatality looms even more.
Quietly I slipped out of Josiahs' view. It was even more crucial now that I pulled forward strength and hope. Desperately I worked to refocus my emotions on something more positive. But today Hope was not standing in front of me. Reality her very honest cousin echoed in my ears. Her harshness repeating the unrelenting fears I had grown to know so well. Surgery was vital for my beautiful sons life. That same procedure did not come without very real risks, and pain. It was up to me again to find a way to be the strength we would both need to face another battle with Duchenne. Battling seemed to be the some of my existence lately. I felt sad that I had nothing more to offer than my shaken emotions. I felt hurt consume the very depths of my being. I wanted hope. Most of all though, I longed to be comforted to have something, someone, hold me for once.
Lost in my thoughts, I jotted down a few sentences, hoping that would help me release a little of the uneasiness I was feeling. Rereading my words I paused momentarily recalling some of the responses I had received from a few blogs I had posted about my feelings previously. On occasion it seemed that the message I had hope to convey was lost to some. I was offered advice on health care, given suggestions on home improvement and my favorite, hints that I some how was in fact not addressing other issues that pertained to my own physical abilities. For the first time in a long time I felt totally distant from the world. I could not recall writing any blog that resembled even remotely that I was asking for advice or for that matter complaining. Why was it, I wondered, impossible for some to just share my passion? Reality echoed even more, was what I searched for even available to me? Perhaps not in the way I had hoped or expected, but yes, those that could share in my intensity far out weighed the negative. Together with the inspiration I wanted to be for others and the encouragement I received I knew that I had connected in some way to other people.
Today though I felt fear overwhelm me, captivate me into my sea of emotions. I looked for hope to help me feel not so isolated but she stood blankly looking back at me. In order for me to have her I would have to escape from the despair that slowly was beginning to surround me. I knew reality was here for me today.
She was not asking anything from me, or demand that I put aside my pain. She showed me the truth, not a world of fairy tales. I realized, again, the pain and fear I felt would pass. I would face whatever challenges that lay ahead with dignity and pride. I would most certainly not let my sons down. I would as always be a constant source of strength for them and that was something I would never let Duchenne take from us.
Reality, helped me to see what I am capable of, but hope helped me find the courage to run with it.
Sometimes it can be tough to find your back when your world has collapsed, or been ripped apart. It can be almost impossible for some of us to even pick ourselves up when we have crashed. We can become so consumed by pain that we lose ourselves completely.
Last night I thought about what makes one person quit and another one only strive harder. "God never gives us more than we can handle". We have all heard that somewhere before. Why I wonder than is there; suicide, depression, alcoholics, drug addicts. We as humans can develop a host of ailments just from stress. Hospitals have special wards just to deal with mental illness. Are we handling it, if we completely withdraw? Are we handling it, if we need a substance to help control our emotions and feelings? What makes one person emotionally stronger than the next? What is it that can separate us so differently?
It also leaves me wondering why it appears to be so easy for some of us to abandon our families in pursuit of selfish desires. Examining my own life it perplexes me that in some ways many of us will excuse one parents failure to put his childs needs first. We even will go so far as to help make excuses for in ability to cope with stress. Call it what you want but, I find myself absolutely unable to listen to any more excuses.
Last night I thought about what makes one person quit and another one only strive harder. "God never gives us more than we can handle". We have all heard that somewhere before. Why I wonder than is there; suicide, depression, alcoholics, drug addicts. We as humans can develop a host of ailments just from stress. Hospitals have special wards just to deal with mental illness. Are we handling it, if we completely withdraw? Are we handling it, if we need a substance to help control our emotions and feelings? What makes one person emotionally stronger than the next? What is it that can separate us so differently?
It also leaves me wondering why it appears to be so easy for some of us to abandon our families in pursuit of selfish desires. Examining my own life it perplexes me that in some ways many of us will excuse one parents failure to put his childs needs first. We even will go so far as to help make excuses for in ability to cope with stress. Call it what you want but, I find myself absolutely unable to listen to any more excuses.
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