I listened in silence to the lyrics. Each note sung held me captive. I was still so easily reminded of what no longer was, and, perhaps never was. I was left a prisoner to my undying dreams and hope. Unable to move, I surrendered to the sweet melody, as waves of emotion consumed me. Almost overwhelmed with desire and conflicted with the harshness of reality, I let my mind and heart replay the heartache I walked away from. Lost in my bittersweet memories, images slowly flashed before me. Images of a time not to long ago that once gave me hope. Moments of time spent in another world. Leaving me now wondering why I was still brought so easily back to yesterday.
I wanted to change what I now felt had wronged me. I wanted to forget the pain I was in many ways growing accustom to. Mostly, I wanted to move on. Move past the hurt and the sorrow that these feelings I once felt, had brought into my world. I did not want the past back but, I wanted the hopes and dreams I had dared to believe in to lead me, again, fearlessly on a new journey.
I listened to the only song that could remind me of so much. The only words that helped me understand why I walked away, from my past. In my mind I knew what I did was right.- Right for me. But still, something inside left me hurting. Left me feeling betrayed by my own emotions. There was nothing left for me to say or do. I needed to be true to myself, but the reality of it all meant, I had walked this journey alone. From the beginning, my desire was all I ever had. Now, here I was listening to the lyrics of a song that summed up everything I had ever meant to say and the emptiness I heard back. " Say something I'm giving up on you."
Monday, March 31, 2014
feeling empowered
Smiling he simply asked me to put him in his stander. Out of the blue without hesitant my Cody asked to stand. I was thrilled and excited this was his own thought this time and not an act of diligent persuasion on my part. After securely and comfortably fitting him in his Easy Stand 5000 I began cranking him up. Stopping just past the 50 percent mark, hoping, I could raise him just a bit more. He looked down at the straps that I had been adjusting and as though he read my mind, "put me higher mom" he said with confidence.
At almost 21 years Cody could still tolerate some body weight on his feet. I was so over joyed that Duchenne had not yet defeated us in getting Cody to stand. I stopped just shy of a 70 degree angle and looked at Cody's face for an indicator of how much stress he was feeling. He looked up at me smiling telling me he was good.
Cody stayed in his stander for 2 hours that day. Standing for several brief intervals of 20 minute periods and asking to be lowered for short rest in between. Not once was a complaint uttered as he stayed engaged in his new Ps4 game. A small price for an investment that gave him pleasure during serious vital stretching therapy. I felt proud and very happy for him, for us. More than that Cody had given back to me the feeling that determination could still give DMD a fight and today Cody had a triumph. His smile as he stood let me now he too understood just what he had truly accomplished.
At almost 21 years Cody could still tolerate some body weight on his feet. I was so over joyed that Duchenne had not yet defeated us in getting Cody to stand. I stopped just shy of a 70 degree angle and looked at Cody's face for an indicator of how much stress he was feeling. He looked up at me smiling telling me he was good.
Cody stayed in his stander for 2 hours that day. Standing for several brief intervals of 20 minute periods and asking to be lowered for short rest in between. Not once was a complaint uttered as he stayed engaged in his new Ps4 game. A small price for an investment that gave him pleasure during serious vital stretching therapy. I felt proud and very happy for him, for us. More than that Cody had given back to me the feeling that determination could still give DMD a fight and today Cody had a triumph. His smile as he stood let me now he too understood just what he had truly accomplished.
Saturday, March 8, 2014
the art of dating
His hand reached out to hold mine as I spoke. Soft and gently he covered my hand with his, while his warm smiling blue eyes gazed into mine. Attentively in a thoughtful silence, he sat across from me, listening as though he wanted to savor every word that I spoke.
I began telling him a story about my son Cody. A story that happened almost 6 years ago that really challenged and changed me. It was a time in my life that I found demanding me to dig deep with in myself, for answers and strength. Strength to help Cody over come the fear and sorrow that had attempted to claim him and begin controlling his emotions. It was a time when I struggled searching for answers that would help convince Cody and myself that even in sorrow there is joy and that every life has a purpose to fulfill. For just a moment he let go of my hand to remove his glasses. I watched as he wiped the left corner of his eye, where I could not help, but notice, a single tear had formed. With out a word he dabbed at it and just as quickly placed his hand back over mine with a gentle squeeze.
His glasses I noticed he left laying next to where he neatly held my hands. I paused momentarily and asked if he was okay. His face only softened more as he smiled back at me with moist eyes. "Please" he said "go on". I finished telling him this was a time shortly after Cody had stopped walking. It was a time in our world where we had to learn to accept the rest of Cody's life would now be spent confide to a chair. A chair with wheels and that was just the beginning of the muscle loss to come. As I continued on with my story I noticed his eyes stayed fixed on my face. Occasionally he would ask a question and then fall back to listening to me as I answered. I finished telling him that the place that Cody had fallen into almost 6 years ago, was a place so deep in despair, he literally had said he had no reason to keep pushing himself. Eventually he said, he wanted to stop going to school. As his mom my heart broke to see him quit on himself, to give up. As a realist I understood where he was coming from. The reality and the harshness of the world that surrounded us then did nothing to help combat the devastation we were facing. In reality my two youngest children had an expiration date that unlike most of us would come far to soon. But, only after years of pain and suffering. Only after spending years trapped in a chair, and becoming totally dependent on assistance to do things as simple as scratching their chin
It was then, almost 6 years ago, that I decided it would be up to me to help Cody, and myself, see past the ugliness Duchenne had presented our world with. I ended with telling my blue eyed date that Cody not only stayed in school, but, that Cody had graduated last year with honors. Something I never would have imagined my son, with a cognitive delay and terminal disease would achieve. Squeezing my hand he asked how I could speak from the heart with so much passion and so eloquently and not once let go of my smile while speaking. So very simply I told him" my smile" is my shield.
After his eyes had dried and we shared some more stories, with laughter, about our children he asked if I would kindly honor him with another date. Smiling, I said one of us should bring tissues just in case. With that, he leaned into whisper in my ear, thank you. Then he embraced me. As we separated I stepped back to look once more at his face to say goodnight, and quickly noticed, where I had seen tears forming earlier in his eyes there now was a little hint of sparkle.
As I drove home that night from my dinner date I realized it had been quite sometime since I had been on a date that was so genuinely focused on learning about my life in the hopes to know me more. I am not sure I had ever been out with anyone who thanked me for sharing so much of my world with them.
I began telling him a story about my son Cody. A story that happened almost 6 years ago that really challenged and changed me. It was a time in my life that I found demanding me to dig deep with in myself, for answers and strength. Strength to help Cody over come the fear and sorrow that had attempted to claim him and begin controlling his emotions. It was a time when I struggled searching for answers that would help convince Cody and myself that even in sorrow there is joy and that every life has a purpose to fulfill. For just a moment he let go of my hand to remove his glasses. I watched as he wiped the left corner of his eye, where I could not help, but notice, a single tear had formed. With out a word he dabbed at it and just as quickly placed his hand back over mine with a gentle squeeze.
His glasses I noticed he left laying next to where he neatly held my hands. I paused momentarily and asked if he was okay. His face only softened more as he smiled back at me with moist eyes. "Please" he said "go on". I finished telling him this was a time shortly after Cody had stopped walking. It was a time in our world where we had to learn to accept the rest of Cody's life would now be spent confide to a chair. A chair with wheels and that was just the beginning of the muscle loss to come. As I continued on with my story I noticed his eyes stayed fixed on my face. Occasionally he would ask a question and then fall back to listening to me as I answered. I finished telling him that the place that Cody had fallen into almost 6 years ago, was a place so deep in despair, he literally had said he had no reason to keep pushing himself. Eventually he said, he wanted to stop going to school. As his mom my heart broke to see him quit on himself, to give up. As a realist I understood where he was coming from. The reality and the harshness of the world that surrounded us then did nothing to help combat the devastation we were facing. In reality my two youngest children had an expiration date that unlike most of us would come far to soon. But, only after years of pain and suffering. Only after spending years trapped in a chair, and becoming totally dependent on assistance to do things as simple as scratching their chin
It was then, almost 6 years ago, that I decided it would be up to me to help Cody, and myself, see past the ugliness Duchenne had presented our world with. I ended with telling my blue eyed date that Cody not only stayed in school, but, that Cody had graduated last year with honors. Something I never would have imagined my son, with a cognitive delay and terminal disease would achieve. Squeezing my hand he asked how I could speak from the heart with so much passion and so eloquently and not once let go of my smile while speaking. So very simply I told him" my smile" is my shield.
After his eyes had dried and we shared some more stories, with laughter, about our children he asked if I would kindly honor him with another date. Smiling, I said one of us should bring tissues just in case. With that, he leaned into whisper in my ear, thank you. Then he embraced me. As we separated I stepped back to look once more at his face to say goodnight, and quickly noticed, where I had seen tears forming earlier in his eyes there now was a little hint of sparkle.
As I drove home that night from my dinner date I realized it had been quite sometime since I had been on a date that was so genuinely focused on learning about my life in the hopes to know me more. I am not sure I had ever been out with anyone who thanked me for sharing so much of my world with them.
Saturday, February 22, 2014
love and the social network
The screen flashed at me. Alerting me I had some new emails. I scrolled through the photos of the newest group of men interested in possibly meeting me. My popularity seemed to be increasing and my choices of pursuers told me my efforts were drawing a rather diverse group of possibilities. I paused momentarily at one caption. Simply stating "Fly with me" instead of hello. I was most definitely intrigued. I read my new email, and then read it again. Shook my head as I smiled to myself. Each day seemed to be introducing me to new and more exciting invitations. My four weeks since joining the social network world so far, had been if nothing else, enjoyable. No doubt, it was expanding my world and my view of what the market held. The few dates I had been on, had been pleasant, but lacking so far in what I found to keep my interest. Nothing had screamed at me -loud enough, to pursue a second date. But I was finding some interest in a few new faces of men who had recently began conversing with me over the phone. It dazzled me while I read my emails, at the opening lines some men used. Creativity was not lacking on this site. I had even had several marriage proposals. I decided I would come back to this latest email. Giving it some thought, before answering, after all what does a girl say to an invitation to fly with a stranger.
I went through the list, reading my remaining emails, only to find myself a bit distracted, by yet another beautifully written note. A note telling me how much a certain man looked forward to meeting me and that just receiving a text from me brightened his day. He, I found to be well grounded, a bit of eye candy and carefully flirtatious. Also he was not hesitating to show me his romantic side by calling me and playing my favorite song over the phone. Qualities that had moved him up the list right there. The world of dating most definitely for me was not lacking in compliments and attention. I was pleased with the amount of text and emails I was receiving in such a short time. Attention, sadly I had been missing for quite some time from my previous relationship. It surprised me as I thought of my past, with just how much we are willing to put up with, in a relationship, that we believe offers us the one thing we desire most-love.
Re-entering the dating world again, I found now to be actually a bit exciting. Meeting new people can be very alluring and fascinating, especially when they share their enthusiasm towards you. I also find it very interesting learning why some of us become so locked into into acting and looking a certain way. A bit perplexed why many adults resist change like a plague, and have no interest in personal improvement, yet strive to capture something so very far out of their reach. Also perplexed why some of us just accept good enough is good enough and some of us want desire so much more. It amazes me how often the way we perceive ourselves is not always the way the world sees us back.
My thoughts were interrupted once again, with a second email from my friend who likes to fly. I was immediately brought back to the present. Hmm.... Was an airplane ride to much for a first date? I wondered? How serious, could this invitation be? This man had however, with out doubt, did his homework, before contacting me. His pictures appeared to be current dated in a sequential order. His face was clear and visible. He captured a full body shot of himself showing me he had intentions of letting me see as much of him as possible. The eight photos he had uploaded for me, told me he had many interest and several big boy toys. One in particular was a small plane with floats. I was impressed, he had taken the time to give me a profile of himself and then taken the time to actually read mine, by commenting on it. Below his picture I read more. He worked for the Delta Airlines. He found my smile captivating him as well as what I wrote. He said he was searching for love. Like most of us hopeless romantics in the dating world. Hoping to find someone that made the mornings a little brighter the nights a little warmer, the days a little happier. Another romantic?? possibly. Another soul searching for love- most definitely.
Four weeks ago when I first set off on my new adventure of dating I was a bit apprehensive. Afraid I would be flooded with a world of men in need of makeovers "immediately", or at the very least men in need of some pointers on how to impress and approach the dating world with results. While that thought represented a large group of men it fleetingly left me for several hours while on my first date. He was put together fine. Tall, very well groomed and very kind, but I simply felt no buzz to continue on to a second date even though his invitation of a night on the town was tempting. Apparently I also learnt that was a fact that would be important for me to make clear, as soon as I realized it on my dates to come. My second interested caller, along with a bouquet of flowers attempted a much more scientific approach to win my interest. He felt confident enough to evaluate the time we spent together by telling me he noticed my pupils dilate several times while we conversed over cocktails. Even though my words the next time he asked me out were saying no he believed my eyes had told him I had an interest. I must say I found this to be an almost fascinating, yet an inappropriate bold approach. He was not successful in persuading me, after all I had dated enough in the past to know if and when I felt something. I may not always know exactly what I want but I do know what I am not interested in. Being told how I feel is not one them. As Kind and sweet as some of my male encounters have been it just is not my job to help lonely hearts not be lonely or give them false hope. I barely have enough time to take care of my own heart and answer the emails I find most tantalizing. Having someone find me interesting and me not reciprocating the feeling is an issue it seems I may need to remember to address firmly.
So I am delighted that I have a few female friends reentering the dating world with me this time. Our taste in men differs enough to not create conflict and yet share in the excitement of possibilities of what our searches turn up. Which has made dating even more enjoyable for me.
Dating in a time that can connect you to someone across the world instantly, almost, has no limits, if you are willing to go that far. But the chemistry and attraction felt between two people still works the same. The social network really can connect you to the world beyond your backyard but it can not make your heart fall without your consent. Inside you know when you have an actual heart interest. A possibility that could flourish in love. I myself may have to work on my pupils a bit, to keep from giving out the wrong message. However I applaud my fellow romantics. Those of us brave souls willing to at least take that extra step to search for love again by creating a profile that says I am desirable and open up to the world of dating. Because after all finding love is really worth the effort.
I went through the list, reading my remaining emails, only to find myself a bit distracted, by yet another beautifully written note. A note telling me how much a certain man looked forward to meeting me and that just receiving a text from me brightened his day. He, I found to be well grounded, a bit of eye candy and carefully flirtatious. Also he was not hesitating to show me his romantic side by calling me and playing my favorite song over the phone. Qualities that had moved him up the list right there. The world of dating most definitely for me was not lacking in compliments and attention. I was pleased with the amount of text and emails I was receiving in such a short time. Attention, sadly I had been missing for quite some time from my previous relationship. It surprised me as I thought of my past, with just how much we are willing to put up with, in a relationship, that we believe offers us the one thing we desire most-love.
Re-entering the dating world again, I found now to be actually a bit exciting. Meeting new people can be very alluring and fascinating, especially when they share their enthusiasm towards you. I also find it very interesting learning why some of us become so locked into into acting and looking a certain way. A bit perplexed why many adults resist change like a plague, and have no interest in personal improvement, yet strive to capture something so very far out of their reach. Also perplexed why some of us just accept good enough is good enough and some of us want desire so much more. It amazes me how often the way we perceive ourselves is not always the way the world sees us back.
My thoughts were interrupted once again, with a second email from my friend who likes to fly. I was immediately brought back to the present. Hmm.... Was an airplane ride to much for a first date? I wondered? How serious, could this invitation be? This man had however, with out doubt, did his homework, before contacting me. His pictures appeared to be current dated in a sequential order. His face was clear and visible. He captured a full body shot of himself showing me he had intentions of letting me see as much of him as possible. The eight photos he had uploaded for me, told me he had many interest and several big boy toys. One in particular was a small plane with floats. I was impressed, he had taken the time to give me a profile of himself and then taken the time to actually read mine, by commenting on it. Below his picture I read more. He worked for the Delta Airlines. He found my smile captivating him as well as what I wrote. He said he was searching for love. Like most of us hopeless romantics in the dating world. Hoping to find someone that made the mornings a little brighter the nights a little warmer, the days a little happier. Another romantic?? possibly. Another soul searching for love- most definitely.
Four weeks ago when I first set off on my new adventure of dating I was a bit apprehensive. Afraid I would be flooded with a world of men in need of makeovers "immediately", or at the very least men in need of some pointers on how to impress and approach the dating world with results. While that thought represented a large group of men it fleetingly left me for several hours while on my first date. He was put together fine. Tall, very well groomed and very kind, but I simply felt no buzz to continue on to a second date even though his invitation of a night on the town was tempting. Apparently I also learnt that was a fact that would be important for me to make clear, as soon as I realized it on my dates to come. My second interested caller, along with a bouquet of flowers attempted a much more scientific approach to win my interest. He felt confident enough to evaluate the time we spent together by telling me he noticed my pupils dilate several times while we conversed over cocktails. Even though my words the next time he asked me out were saying no he believed my eyes had told him I had an interest. I must say I found this to be an almost fascinating, yet an inappropriate bold approach. He was not successful in persuading me, after all I had dated enough in the past to know if and when I felt something. I may not always know exactly what I want but I do know what I am not interested in. Being told how I feel is not one them. As Kind and sweet as some of my male encounters have been it just is not my job to help lonely hearts not be lonely or give them false hope. I barely have enough time to take care of my own heart and answer the emails I find most tantalizing. Having someone find me interesting and me not reciprocating the feeling is an issue it seems I may need to remember to address firmly.
So I am delighted that I have a few female friends reentering the dating world with me this time. Our taste in men differs enough to not create conflict and yet share in the excitement of possibilities of what our searches turn up. Which has made dating even more enjoyable for me.
Dating in a time that can connect you to someone across the world instantly, almost, has no limits, if you are willing to go that far. But the chemistry and attraction felt between two people still works the same. The social network really can connect you to the world beyond your backyard but it can not make your heart fall without your consent. Inside you know when you have an actual heart interest. A possibility that could flourish in love. I myself may have to work on my pupils a bit, to keep from giving out the wrong message. However I applaud my fellow romantics. Those of us brave souls willing to at least take that extra step to search for love again by creating a profile that says I am desirable and open up to the world of dating. Because after all finding love is really worth the effort.
Sunday, February 2, 2014
the new
I gave my image a quick glance over through the glass window. Pleased at the reflection that smiled back at me, I slowly entered the heavy wood framed doors. A tinge of nervousness caused a small flutter with in my abdomen, as I carefully scanned the dimly lit bar room. Trying desperately to keep the photographed face of my date pictured in my mind while I searched for him.
It had been a few years since I had last been inside Keegans Pub, and the pleasant familiarity came rushing back to me instantly. I had indeed enjoyed so many casual platonic meetings here in the past. The comfort level reminding me once again why, I had chosen this place tonight. First dates had always been easy for me in the previous years following my divorce. I wondered if tonight would be any different. After all I was older and wiser with nothing to loose, knowing I would leave exactly as I came. I felt a pair of eyes looking at me from a cross the room, I looked up and there he was. His handsome smile broadening as our eyes met. As if on cue he rose from his chair eagerly waiting my approach. Yes I was definitely experiencing a slight case of the jitters. Something I had not felt in quite sometime and found now to be very interesting. Why and how I wondered, did he have such an effect on me. As I reached the table, instantly he stepped forward to extend his strong hand in a firm greeting. His scent almost tantalizing me, as his hazel eyes lingered just slightly enough, to let me know I had commanded his full attention.
Conversation and the surge of occasional laughter managed to last between us for several hours. I embraced his light humor and found myself almost dazzled by the ease of our conversing. I sighed momentarily remembering the uneasiness I had felt earlier in the evening. The night simply could not have went more perfect if I had wrote it and rehearsed it myself. I was in awe of the fact that the night was shortly coming to an end. We rose together to say our goodbyes but his embrace told me, this truly was just hello. My nap from the dating world was over and a new journey was possibly on the verge of beginning. I felt good about the steps I had taken to get to where I was now, and happy to be able to share my moving on, with a new attraction.
It had been a few years since I had last been inside Keegans Pub, and the pleasant familiarity came rushing back to me instantly. I had indeed enjoyed so many casual platonic meetings here in the past. The comfort level reminding me once again why, I had chosen this place tonight. First dates had always been easy for me in the previous years following my divorce. I wondered if tonight would be any different. After all I was older and wiser with nothing to loose, knowing I would leave exactly as I came. I felt a pair of eyes looking at me from a cross the room, I looked up and there he was. His handsome smile broadening as our eyes met. As if on cue he rose from his chair eagerly waiting my approach. Yes I was definitely experiencing a slight case of the jitters. Something I had not felt in quite sometime and found now to be very interesting. Why and how I wondered, did he have such an effect on me. As I reached the table, instantly he stepped forward to extend his strong hand in a firm greeting. His scent almost tantalizing me, as his hazel eyes lingered just slightly enough, to let me know I had commanded his full attention.
Conversation and the surge of occasional laughter managed to last between us for several hours. I embraced his light humor and found myself almost dazzled by the ease of our conversing. I sighed momentarily remembering the uneasiness I had felt earlier in the evening. The night simply could not have went more perfect if I had wrote it and rehearsed it myself. I was in awe of the fact that the night was shortly coming to an end. We rose together to say our goodbyes but his embrace told me, this truly was just hello. My nap from the dating world was over and a new journey was possibly on the verge of beginning. I felt good about the steps I had taken to get to where I was now, and happy to be able to share my moving on, with a new attraction.
Saturday, February 1, 2014
beyond
His blue eyes looked back me as though he was lost and unable to show any emotion, almost as though he was void of all human feeling. In cool silence, with out words he sat. His strong hands, the hands that had at one time tenderly held my own, now laid neatly folded, in front him, while he blankly, looked at me. I searched his face for something. Anything, that resembled an inkling of the emotions I desperately yearned for. My mind raced with thoughts, and memories of us, while I fought to hold back the heartache that was anxiously waiting to consume me. Slowly I parted my lips to speak to him from my heart. A heart, that for several weeks, now had felt as the though shards of glass had severed it into broken sections. My words echoed in my head with each syllable as I spoke. Desperately I wanted to reach into the depths of his soul. Clutching at the smallest bit of hope, I waited to hear him say something, to help me not give up on him. Something that declared we still had a chance together. Hope that somehow I could find some passion for me, with in him alive. His defensive response only reassured what I had already began to realize months ago, was missing. After all this time, he still could not tell me the three words I wanted to hear. There simply was nothing left for me to fight for. With out warning, I swiftly rose to my feet and walked away. Leaving him sitting at the table alone, in his protected world. A world where he had allowed fear to build a wall. A wall that shut out the one thing we all as humans strive for. His past holding him captive in a space void of the beauty which comes from love.
My drive home alone that night was met with a long thoughtful silence. A silence I embraced. Somehow, as much as my heart ached for the man I had fallen in love with, I knew it was what I needed to do. He had told me he had feelings but ....With out conviction of the words, he knew I longed for, and needed to hear. His own use of the word BUT told me more than he knew. I had put aside my own fears and shared with him from my heart. Sadly he was no closer to telling me something to keep me from giving up. As I drove in my silence it become clear, loosing me was something he had already prepared to do. It was a choice he had long ago accepted. After four years together, the best he could give me was the willingness to work toward an agreement, as though love was capable of standing still and be negotiated.
In moving on and rediscovering me, I find myself deeply consumed at times analyzing the dysfunction of so many humans. I am staggered by the endless search for love from the world that surrounds me. The willingness to search for love by so many, but the lack of change to attempt to attract our hearts desire, and the strength demanded to hold on to it. As always in all my endeavors it is my hope to gain insight and knowledge. To walk away with more than what I began my journey with. True satisfying love comes from the heart and not the mind.
My drive home alone that night was met with a long thoughtful silence. A silence I embraced. Somehow, as much as my heart ached for the man I had fallen in love with, I knew it was what I needed to do. He had told me he had feelings but ....With out conviction of the words, he knew I longed for, and needed to hear. His own use of the word BUT told me more than he knew. I had put aside my own fears and shared with him from my heart. Sadly he was no closer to telling me something to keep me from giving up. As I drove in my silence it become clear, loosing me was something he had already prepared to do. It was a choice he had long ago accepted. After four years together, the best he could give me was the willingness to work toward an agreement, as though love was capable of standing still and be negotiated.
In moving on and rediscovering me, I find myself deeply consumed at times analyzing the dysfunction of so many humans. I am staggered by the endless search for love from the world that surrounds me. The willingness to search for love by so many, but the lack of change to attempt to attract our hearts desire, and the strength demanded to hold on to it. As always in all my endeavors it is my hope to gain insight and knowledge. To walk away with more than what I began my journey with. True satisfying love comes from the heart and not the mind.
Wednesday, January 1, 2014
Every now and then I am given the opportunity to see my sons throw a curve to Duchenne. Rejoicing with what might be a seemingly small feat of muscle strength to the ambulatory world yet a very large triumph for my sons and I.
Yesterday shortly after dressing and lifting Cody from his bed into his desk chair on wheels I wheeled him into his bathroom to brush his teeth. A ritual he took pride in and was still able to perform daily with minimal assistance. I fixed his electric tooth brush up with tooth paste and handed it to him. Laying a hand towel next to him, I watched momentarily as he slowly moved his hand in front the motion sensors of his bathroom faucet. I stood there wondered for a second just how much longer he and Josiah would continue to prefer the desk chairs in the house rather than their power chairs. Carefully he held his toothbrush under the running water. Satisfied he had his task at hand under control, I could now concentrate on assisting Josiah with his morning hygiene. Shortly after I had Josiah lifted from his bed and seated him comfortably in his desk chair I returned to check on Cody. Much to my joy he was not only done washing his hands and brushing his teeth he was now attempting to etch his way out of his en suite, by propelling himself with his feet backward into the hall. I was thrilled this was still a physical capability for him, and feeling hopeful the he was getting a bit of muscle stretching in return with out my assistance. From the back of the chair I assisted Cody slightly over the threshold leading from his en suite. While most of the door ways though out our house on the main level had been modified to serve both of my two younger sons needs, this one still required a bit more muscle strength to propel by use of a wheeled office chair.
Cody now free to roam on his own worked his way back in to his bedroom. I watched as he paused slightly at his closet door reaching for a stretchy cord with a clasp attached. He diligently raised his arm to pull the strap from the door handle. With deep concentration he worked his fingers to maneuver the strap around his head. Leaning forward he draped the elastic cord around his neck. Not sure why he wanted the cord on I watched him continue to move. With a force all his own he managed to get himself positioned in front of his PS3on a shelf just at foot of his bed. I stood amazed . Cody was defying Duchenne right now. He was 20 and a half. Clearly arm strength was diminishing as well as leg. Cody was very limited with his ability to use his arms, yet there he was. Placing a neck cord over his head,most likely just because he could still do it. Using his feet to push himself around and feeling happy he could still manage.
I smiled as I recalled the past year. 2013 had been an eventful year for us. Yes it had had its up and downs. But we had made it through all of it. Not with out tears and some losses, and the end of the year has personally been difficult for me. But the year has filled me with great joy. Watching Cody graduate from high school taking the lead. As a Duchenne mom there are no words to describe the magnitude of joy I had as Cody personally accepted his diploma. My child with a fatal disease and a cognitive delay graduated with honors.
This year one day out of the blue Cody had told me just how he felt. He looked up at me and said "mom I have a good life". That told me all I needed to know. My son- at least right now- was happy. I felt relief. It was a year that still had its trying moments and hurdles for us to over come . But both boys managed to letter in adapted bowling at school. Make the honor role and attempt a few new things. Josiah and Cody went Turkey hunting, was successful at Salmon fishing. This past fall both also went bear hunting. Cody after only being out in the woods for 2 hours had harvested his own bear. Yes, clearly we had been blessed to have these opportunities. Memories of very special moments I shared with my sons. I felt good about the year we had had. I felt proud of what I had accomplished myself as a single parent without their fathers help at all. Despite the comments and negative rapport that had worked its way back to me, I had indeed accomplished more than I would have thought possible. Whatever was said about me did not matter. I had won the praise of my son and that was all that counted.
Yesterday shortly after dressing and lifting Cody from his bed into his desk chair on wheels I wheeled him into his bathroom to brush his teeth. A ritual he took pride in and was still able to perform daily with minimal assistance. I fixed his electric tooth brush up with tooth paste and handed it to him. Laying a hand towel next to him, I watched momentarily as he slowly moved his hand in front the motion sensors of his bathroom faucet. I stood there wondered for a second just how much longer he and Josiah would continue to prefer the desk chairs in the house rather than their power chairs. Carefully he held his toothbrush under the running water. Satisfied he had his task at hand under control, I could now concentrate on assisting Josiah with his morning hygiene. Shortly after I had Josiah lifted from his bed and seated him comfortably in his desk chair I returned to check on Cody. Much to my joy he was not only done washing his hands and brushing his teeth he was now attempting to etch his way out of his en suite, by propelling himself with his feet backward into the hall. I was thrilled this was still a physical capability for him, and feeling hopeful the he was getting a bit of muscle stretching in return with out my assistance. From the back of the chair I assisted Cody slightly over the threshold leading from his en suite. While most of the door ways though out our house on the main level had been modified to serve both of my two younger sons needs, this one still required a bit more muscle strength to propel by use of a wheeled office chair.
Cody now free to roam on his own worked his way back in to his bedroom. I watched as he paused slightly at his closet door reaching for a stretchy cord with a clasp attached. He diligently raised his arm to pull the strap from the door handle. With deep concentration he worked his fingers to maneuver the strap around his head. Leaning forward he draped the elastic cord around his neck. Not sure why he wanted the cord on I watched him continue to move. With a force all his own he managed to get himself positioned in front of his PS3on a shelf just at foot of his bed. I stood amazed . Cody was defying Duchenne right now. He was 20 and a half. Clearly arm strength was diminishing as well as leg. Cody was very limited with his ability to use his arms, yet there he was. Placing a neck cord over his head,most likely just because he could still do it. Using his feet to push himself around and feeling happy he could still manage.
I smiled as I recalled the past year. 2013 had been an eventful year for us. Yes it had had its up and downs. But we had made it through all of it. Not with out tears and some losses, and the end of the year has personally been difficult for me. But the year has filled me with great joy. Watching Cody graduate from high school taking the lead. As a Duchenne mom there are no words to describe the magnitude of joy I had as Cody personally accepted his diploma. My child with a fatal disease and a cognitive delay graduated with honors.
This year one day out of the blue Cody had told me just how he felt. He looked up at me and said "mom I have a good life". That told me all I needed to know. My son- at least right now- was happy. I felt relief. It was a year that still had its trying moments and hurdles for us to over come . But both boys managed to letter in adapted bowling at school. Make the honor role and attempt a few new things. Josiah and Cody went Turkey hunting, was successful at Salmon fishing. This past fall both also went bear hunting. Cody after only being out in the woods for 2 hours had harvested his own bear. Yes, clearly we had been blessed to have these opportunities. Memories of very special moments I shared with my sons. I felt good about the year we had had. I felt proud of what I had accomplished myself as a single parent without their fathers help at all. Despite the comments and negative rapport that had worked its way back to me, I had indeed accomplished more than I would have thought possible. Whatever was said about me did not matter. I had won the praise of my son and that was all that counted.
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