Almost instantly I felt his eyes linger in my direction as I approached the doorway. His smile widening as I drew nearer. I was not sure at first if it even was me that had captivated him so intensely. Turning my head slightly to look around me, I noticed, I was the only one he was looking at, as I stood alone in the doorway. His attention appeared to be totally focused on me. Slowly I stepped forward, his gaze followed up my thin silhouette as I moved through the thresh hold. I could not ignore his eyes as they traveled upward slowly, toward my face, pausing occasionally at intervals, as though he was savoring every inch of what he saw. Not hesitating to linger his gaze where he pleased. I casually tossed my hair off my shoulders so it hung down my back. A nervous smile now beginning to form on my lips as I continued to walk in his direction. Keeping his eyes fixed on me he shifted his tall lean
body in my direction, almost as though he was eagerly waiting to
greet me.
I felt remarkably confident today in my new dress and black patent heeled sandals. I had chosen the black sleeveless fitted jersey frock that stopped midway above my knees, hoping to create a sleek combination of pretty and elegant. Liking the way it hugged at my thin hips while also emphasizing my trim waist. Scooped just low enough between my breast to allow a hint of imagination. Allowing me to draw attention with out asking for trouble. I could not remember the last time I had even dressed up to go out anywhere that did not include my sons, and a pair of skinny jeans tucked in cowboy boots. For the first time in almost a month I had an afternoon to myself. A day free of schedules and caring for my sons. Time set a side to reward myself. Unfortunately finding a companion available did not fall into my plans. Dressed up and feeling especially good about my appearance I had decided to treat myself to lunch out. Having finally found the courage to dine alone, I entered a quaint little establishment I had visited once before in the past with a gentlemen caller. I had originally hoped that the day would have involved me spending time with a special man in my life. Regretfully due to conflict in schedules, and a difference in the understanding of parental time off, that,was just not going to happen today. So on this sunny afternoon, dressed like I might have a life outside of raising children, I ventured out alone.
Slowly I could see this new stranger part his lips to speak to me. I felt my heart quicken as I moved forward unable to avoid passing directly in front of him. What could he possibly want to say to me I wondered. Our eyes locked, meeting momentarily, as I passed by at the bar, in hopes to locate a small table near a window. It was almost to undeniable to not sense his instant attraction to me. "You are very beautiful" he told me with out hesitating in a low soft voice. As he took a step forward towards me I could feel his eyes sweep over me once again, stopping briefly at my legs and then swiftly moving back up to my face. I smiled shyly, unable to ignore the attention he offered, and now beginning to feel a slight blush cascade across my cheeks, while he began apologizing for speaking so forwardly. As though he sensed my uncomfortableness with his flirtatious advance he confessed quickly it was a thought he had meant to keep to himself but simply found me very alluring. Now that I was with in a few feet of him I felt almost certain he could not be more than in his very early forties. I wondered momentarily how old he thought I might be. Giving me even more reason to smile. I felt myself grow more intrigued by the fact, that for whatever reason, he had the courage to be so forward. Politely and almost a bit flirtatiously I heard myself giggle and then thank him. Not sure what to do next I told him to have a nice day and began to continue walking to the other side of the room hoping to locate a seat. As I stepped passed him I could not help but notice the aroma of his cologne. He did smell remarkably good. I fought the urge to look back for just a second, knowing perfectly well that would only let him feed on the fact that I might be a bit interested too. He was very handsome. Dark thick smooth hair covered his head, carefully trimmed just above the collar. A slight soul patch resting just below his lower lip, which held a dazzling smile. Yes, no doubt definite eye candy. In all honesty, secretly I did find this handsome stranger to be a bit distracting, light exchanges of greetings could not be harmful, I reasoned, to my self . After all, I was not married, not even engaged. No jewel bedazzled my hand in promise of anything. In fact the L-word had not even so much as escaped once between me and my current heart interest.
It seemed odd to me though that even as a mature female I could be made to feel awkward and even a bit self conscience about my appearance, hell, or even my sexuality in public, by the opposite sex. I had grown accustom to meeting new men and sharing light conversation. Having re-entered the dating world 9 years ago, casual dating was a past time I had enjoyed. I actually had become quite comfortable with first encounters. Relationships on the other hand, well, that was a bit difficult and altogether different story. However, this was not the first time I had heard a compliment by someone so forward, but it did touch me today. I had really hoped I could have been sharing my parental weekend off with someone that was special to me. Someone I had been seeing and hoped was growing more meaningful. I was desperately feeling I was missing something this weekend and quite frankly the attention I was now receiving helped me to see that even more.
Just across from the bar I noticed an open table in a corner. It seemed no sooner had I spotted the table and then it was claimed by a young couple. My attention was swiftly drawn back to the bar where this handsome stranger stood, still somewhat drawn to me. I stood for a mere second void of all thought. Quickly I was brought back to the now, when his voice verified what I had discovered myself, the place was quite full. However, next to him and the stool he had been sitting on, was another open chair. His smile was beckoning me to sit down. I was hungry and really not wanting to stand alone, waiting for something to open. I did what any alive, red blooded, independent single female would do when approached by an attractive male in a hopeless situation. I accepted his invitation to join him for lunch.
Do you want to know more????
Friday, November 8, 2013
Sunday, October 20, 2013
only in my dream
After what seemed like hours of tossing and turning, I simply gave up. De tangling myself from the comfort and warmth of my covers, I stretched my tired legs and got out of bed. The shock of the cool hard wood floor beneath my naked feet sent shivers up my calves, leaving me scrambling in the dark for my slippers. Sleep was just not going to happen for me right now, no matter how hard I tried to free myself. At the moment I was helplessly trapped in a flood of visions. Visions that danced around in my head, twirling and bouncing with robust energy. My mind raced with thoughts and ideas. Things that I had not yet done, and hoped to do. Events that I had not yet had the chance to partake in with my sons. People and places I wanted to visit. Projects around the house I had not finished or even started. Most importantly for the current moment though, I was in need of some comfort. I was loosing in my battle of self control and found myself falling victim to concern and worry. Yearning to understand why I was now in the middle of the night so absorbed in the reality of things. Desperately wanting to change the obstacles that I felt threatened my relationship with happiness. Hoping to find a solution for everything I knew that was not quite right, in my life.
As if I was a piece of metal being pulled by a magnetic force, I could no longer fight my craving for a little self gratification from the realizations that haunted me. Truthfully I was having a personal crisis and now it was insisting that I get out of bed in the middle of the night to secretly indulge in a form of self consoling ritual. What I wanted and needed right now was to curl up on my recliner sofa in the in the wee hours of the night, while the world slept. Wrapped snuggly in a knitted throw in front of my fire place, enjoying a bowl of my favorite ice cream, and become lost in a romantic novel. A selfish past time that I found myself becoming more and more attached to lately.
It was not to long after surrendering to my desire, that I soon found myself with heavy eyelids, slowly falling into a dreamy state, that was finally freeing my busy mind of the real world, at least momentarily. Abruptly I was awaken by a mix of dreams. Still holding my book in one hand, I glanced around the room. I was alone. Nothing seemed unchanged. Everything was just as I had l remembered, before shutting my eyes. I shifted my weight to let the chair rise forward. Lifting my head, I noticed my hair felt dampened and my throat dry. I looked toward the clock just off to the side of my fireplace, where flames wildly danced, it was now 4am. I had been a sleep for only an hour. Sitting there alone, ever so slowly pieces of my dream began to flash in front of me.
I wanted desperately to go back. Back into the visions that had held me captive for the past hour. To afraid to move, I sat embracing the sheer longing of what truly haunted me. I had just seen my Cody walk in my dream. He looked at me smiling. As he took a step toward me, he out stretched his hand. Reaching for me as he raised a foot, in a very carefully calculated step. Around him illuminated a light. Soft and glowing as though golden angels were surrounding him. I froze in elated joy as he came towards me step after step. Unable to move holding my breath, wanting the moment to never end. As I raised my hand to grasp his, I saw I held a small scissor. It resembled one that I kept in my kitchen. Looking down closer I noticed my thumb had become stuck in the small finger opening. In anguish I tried to pry it from my thumb. Frantically attempting to shake it from my hand so I could fully extend my arms to Cody. We were alone and I felt a rush of desperation, wishing I had help. As the scissor fell, so did Cody. Slowly he fell into my arms, never taking his eyes off mine as he silently slid downward.
It has been quite a while since I had a dream where Cody and Josiah walked. But the memories of a time not all to long ago, when this was possible, is still magically kept close in my thoughts. There are many possibilities that may have provoked my recent dream of Cody. Without to much analyzing I can sum it up that there is a very deep part of me that struggles constantly with accepting the future, mine and his, together. I can only say that I feel blessed to see him walk even if it is ONLY in my dreams, and even if it is because, I am struggling with some very hard harsh realities. Duchenne and its unrelenting progression.
It took me a while to fall back to sleep again. Clutching my romance novel once more until my eyes felt heavy, I surrendered, happily to my dreams. Hoping that some how very soon I would see my sons walk again even if it was only in my dreams.
As if I was a piece of metal being pulled by a magnetic force, I could no longer fight my craving for a little self gratification from the realizations that haunted me. Truthfully I was having a personal crisis and now it was insisting that I get out of bed in the middle of the night to secretly indulge in a form of self consoling ritual. What I wanted and needed right now was to curl up on my recliner sofa in the in the wee hours of the night, while the world slept. Wrapped snuggly in a knitted throw in front of my fire place, enjoying a bowl of my favorite ice cream, and become lost in a romantic novel. A selfish past time that I found myself becoming more and more attached to lately.
It was not to long after surrendering to my desire, that I soon found myself with heavy eyelids, slowly falling into a dreamy state, that was finally freeing my busy mind of the real world, at least momentarily. Abruptly I was awaken by a mix of dreams. Still holding my book in one hand, I glanced around the room. I was alone. Nothing seemed unchanged. Everything was just as I had l remembered, before shutting my eyes. I shifted my weight to let the chair rise forward. Lifting my head, I noticed my hair felt dampened and my throat dry. I looked toward the clock just off to the side of my fireplace, where flames wildly danced, it was now 4am. I had been a sleep for only an hour. Sitting there alone, ever so slowly pieces of my dream began to flash in front of me.
I wanted desperately to go back. Back into the visions that had held me captive for the past hour. To afraid to move, I sat embracing the sheer longing of what truly haunted me. I had just seen my Cody walk in my dream. He looked at me smiling. As he took a step toward me, he out stretched his hand. Reaching for me as he raised a foot, in a very carefully calculated step. Around him illuminated a light. Soft and glowing as though golden angels were surrounding him. I froze in elated joy as he came towards me step after step. Unable to move holding my breath, wanting the moment to never end. As I raised my hand to grasp his, I saw I held a small scissor. It resembled one that I kept in my kitchen. Looking down closer I noticed my thumb had become stuck in the small finger opening. In anguish I tried to pry it from my thumb. Frantically attempting to shake it from my hand so I could fully extend my arms to Cody. We were alone and I felt a rush of desperation, wishing I had help. As the scissor fell, so did Cody. Slowly he fell into my arms, never taking his eyes off mine as he silently slid downward.
It has been quite a while since I had a dream where Cody and Josiah walked. But the memories of a time not all to long ago, when this was possible, is still magically kept close in my thoughts. There are many possibilities that may have provoked my recent dream of Cody. Without to much analyzing I can sum it up that there is a very deep part of me that struggles constantly with accepting the future, mine and his, together. I can only say that I feel blessed to see him walk even if it is ONLY in my dreams, and even if it is because, I am struggling with some very hard harsh realities. Duchenne and its unrelenting progression.
It took me a while to fall back to sleep again. Clutching my romance novel once more until my eyes felt heavy, I surrendered, happily to my dreams. Hoping that some how very soon I would see my sons walk again even if it was only in my dreams.
a shared event
I was surrounded by smiles and laughter. Feeling especially happy to be enjoying a night out with two of my three sons and a few friends, who also were able to attend the nights hilarious performance of " Sideways Stories of Wayside School. We were part of a small crowd with a rather intimate yet casual setting that made a full circle around the stage. I could not remember the last time my sons had been seated in the very front row, with their wheelchairs, for any event. With just an isle between us and the stage, it almost felt as though we ourselves, were part of the cast of characters.
Occasionally soft laughter escaped from my sons, Josiah and Cody along with their friends as they watched the play. I peered down a few seats off to my side, to the row in front of me, where my middle son Cody sat in his wheelchair next to his friend, Kayla. Feeling very happy, he was able to enjoy a fun night out with good friends. Ever so sweetly I watched as Kayla reached over to place her hand in Cody's. I was momentarily overwhelmed with my own happiness as they sat with their hands locked, watching the play. A triumphant moment to me, that they shared, unknowingly. My heart filled with joy instantly to see Cody experience a simple pleasure of being a young adult, sharing a special moment with a female friend. A quote as we might say "normal" moment, many of us in the DMD world dream of our sons having.
Not to far off from where we were gathered to my left, another family sat. A young teenage boy in a wheel chair, accompanied by his mother and a young girl most likely his sister. It was not the sight of them that had drawn my attention, but rather the occasional sounds that escaped from the boy. It was very apparent he too was enjoying the play as much as we were. His enthusiasm came out in little sounds that were discreetly attempted to be quited by his mother. While still basking in my own joy of watching Cody and his beautiful friend I could not help but once or twice glance over at this other family. I was feeling some what drawn to this mother, out alone with her two children. Most likely just wanting to offer them a night of enjoyment out. Some family time spent together away from home. Each time her son would make a small chain of snorts or chuckle I could almost feel her anxiety, as she diligently tried to coax him into silence. I could see his sister slowly shrink behind her mother, as if in someway perhaps attempting to hide in embarrassment as he would vocalize his emotion. A part of me so desperately wanted to somehow let this mother know I understood the anxiety she might be feeling right now, as she tried to shush her son. So many times I too had also been in similar situations, when my own sons did not exactly act in a way that would be socially acceptable. Cody and Kayla both were expressing their own enthusiasm for the play, in occasional burst of laughter and words of cheer.
I looked around the theater to see if there were any people who openly displayed discomfort in being in the presence of our special children, after all this private performance was for HOPEKIDS and family and friends of the actors. As I expected I saw none. The wonderful cast continued with their delightful performance unaffected by our jubilant attention. In my heart I still felt so deeply for this mother and the discomfort she seemed to feel. Just like her, I was there wanting too spend time with my sons in an entertaining activity. I offered a smile from across where I sat. Hoping that somehow if at all possible she could feel some comfort. Like any parent with a special needs child it is not an easy task in taking them on an outing. This mother undoubtedly had her own struggles in bringing her son out and she had my admiration for loving her son enough to share him with us.
Occasionally soft laughter escaped from my sons, Josiah and Cody along with their friends as they watched the play. I peered down a few seats off to my side, to the row in front of me, where my middle son Cody sat in his wheelchair next to his friend, Kayla. Feeling very happy, he was able to enjoy a fun night out with good friends. Ever so sweetly I watched as Kayla reached over to place her hand in Cody's. I was momentarily overwhelmed with my own happiness as they sat with their hands locked, watching the play. A triumphant moment to me, that they shared, unknowingly. My heart filled with joy instantly to see Cody experience a simple pleasure of being a young adult, sharing a special moment with a female friend. A quote as we might say "normal" moment, many of us in the DMD world dream of our sons having.
Not to far off from where we were gathered to my left, another family sat. A young teenage boy in a wheel chair, accompanied by his mother and a young girl most likely his sister. It was not the sight of them that had drawn my attention, but rather the occasional sounds that escaped from the boy. It was very apparent he too was enjoying the play as much as we were. His enthusiasm came out in little sounds that were discreetly attempted to be quited by his mother. While still basking in my own joy of watching Cody and his beautiful friend I could not help but once or twice glance over at this other family. I was feeling some what drawn to this mother, out alone with her two children. Most likely just wanting to offer them a night of enjoyment out. Some family time spent together away from home. Each time her son would make a small chain of snorts or chuckle I could almost feel her anxiety, as she diligently tried to coax him into silence. I could see his sister slowly shrink behind her mother, as if in someway perhaps attempting to hide in embarrassment as he would vocalize his emotion. A part of me so desperately wanted to somehow let this mother know I understood the anxiety she might be feeling right now, as she tried to shush her son. So many times I too had also been in similar situations, when my own sons did not exactly act in a way that would be socially acceptable. Cody and Kayla both were expressing their own enthusiasm for the play, in occasional burst of laughter and words of cheer.
I looked around the theater to see if there were any people who openly displayed discomfort in being in the presence of our special children, after all this private performance was for HOPEKIDS and family and friends of the actors. As I expected I saw none. The wonderful cast continued with their delightful performance unaffected by our jubilant attention. In my heart I still felt so deeply for this mother and the discomfort she seemed to feel. Just like her, I was there wanting too spend time with my sons in an entertaining activity. I offered a smile from across where I sat. Hoping that somehow if at all possible she could feel some comfort. Like any parent with a special needs child it is not an easy task in taking them on an outing. This mother undoubtedly had her own struggles in bringing her son out and she had my admiration for loving her son enough to share him with us.
Sunday, October 6, 2013
healing
His head hung down as he walked away from me. In silence he climbed back in to his truck, keeping his eyes from meeting mine, but still looking back at where I stood alone. I watched as he slowly backed out of my drive way. I had nothing but apathy for the the man. He had fallen so low, to a place I could only try to imagine was like. A place that seemed so empty and void of all that held beauty and truth. A place where he could only blame himself for falling into. A place where love seemed lost.
I had moved on and I could see he struggled with accepting that. Somehow in his heart he held on to hope. Hope that we would somehow once again reunite in this journey. It was in that moment I realized all the anger I had held in my heart from the years past had melted away. I had nothing left inside to offer him accept, pity and sorrow. Sorrow because he now understood what he had walked away from years ago. Pity because I knew he would never be enough for me or his sons ever again. The love he so unwillingly refused to give back years ago, now tore at him. The faith he had lacked then had put him in the lonely place he was now. What he wanted most right now was the furthest from him, than it had ever been, with no hopes of ever being regained again.
I turned to walk back inside my house. The house I had manged to save for and buy myself. The house I had had adapted to meet the special physical needs of my sons. The house through sacrifice and hard work I had turned into a home for my three sons and I. There was no presence of him in my personal world. I smiled looking at the photos decorating my walls that clearly displayed me and my sons and the triumphs we shared together. I had made a place for us in this world on my own, that left me free and in control. My home now beamed of the world I created and shared with my three beautiful sons. The path we had been traveling on for 9 years had brought challenge but also great reward. I was pleased with what I had accomplished on my own and embraced the strength that had grown with in me, facing all the hurdles of single parenting and especially raising two physically and mentally challenged sons by myself. We were together, my sons and I, and nothing could make me feel more proud. I had managed to give my sons a world that dared them to dream, that rewarded them for their efforts, above all that showered them with unconditional love.
Even though I felt even more free, now that I had finally let go of the hurt from my past, it did though feel strange and new. The dreams I had once believed in and had hoped would be my destiny at one time were now replaced, by new ideas and desires. The past buried, as if it had never existed. As my world changed I changed with it, in so many ways. I stopped in front of the mirror and glanced at my reflection. I looked the same, perhaps even better, but I had in fact changed inside so much, over the years. At times it even scared me, knowing how much I was willing to challenge myself and willing to sacrifice to give my boys the life I longed for them, on this journey.
I can not say that my life has worked out even close to the way I imagined it would. Even now to day, I am most of the time surprised at the places I am led to and the adventures I embark on with my sons. What ever the journey I can only pray I will be blessed with the strength to be all that my sons will need.
I had moved on and I could see he struggled with accepting that. Somehow in his heart he held on to hope. Hope that we would somehow once again reunite in this journey. It was in that moment I realized all the anger I had held in my heart from the years past had melted away. I had nothing left inside to offer him accept, pity and sorrow. Sorrow because he now understood what he had walked away from years ago. Pity because I knew he would never be enough for me or his sons ever again. The love he so unwillingly refused to give back years ago, now tore at him. The faith he had lacked then had put him in the lonely place he was now. What he wanted most right now was the furthest from him, than it had ever been, with no hopes of ever being regained again.
I turned to walk back inside my house. The house I had manged to save for and buy myself. The house I had had adapted to meet the special physical needs of my sons. The house through sacrifice and hard work I had turned into a home for my three sons and I. There was no presence of him in my personal world. I smiled looking at the photos decorating my walls that clearly displayed me and my sons and the triumphs we shared together. I had made a place for us in this world on my own, that left me free and in control. My home now beamed of the world I created and shared with my three beautiful sons. The path we had been traveling on for 9 years had brought challenge but also great reward. I was pleased with what I had accomplished on my own and embraced the strength that had grown with in me, facing all the hurdles of single parenting and especially raising two physically and mentally challenged sons by myself. We were together, my sons and I, and nothing could make me feel more proud. I had managed to give my sons a world that dared them to dream, that rewarded them for their efforts, above all that showered them with unconditional love.
Even though I felt even more free, now that I had finally let go of the hurt from my past, it did though feel strange and new. The dreams I had once believed in and had hoped would be my destiny at one time were now replaced, by new ideas and desires. The past buried, as if it had never existed. As my world changed I changed with it, in so many ways. I stopped in front of the mirror and glanced at my reflection. I looked the same, perhaps even better, but I had in fact changed inside so much, over the years. At times it even scared me, knowing how much I was willing to challenge myself and willing to sacrifice to give my boys the life I longed for them, on this journey.
I can not say that my life has worked out even close to the way I imagined it would. Even now to day, I am most of the time surprised at the places I am led to and the adventures I embark on with my sons. What ever the journey I can only pray I will be blessed with the strength to be all that my sons will need.
Saturday, October 5, 2013
the mom call
I jolted upright, almost throwing the covers to the floor. Moving before panic and fear could begin to flood me. Glancing only for a mere second towards the monitor and its bright green flashing light, as I scrambled to my feet. I watched as three squares flashed again, which alerted me even more- that I had definitely heard something from upstairs. With in seconds I was running down the hall in my bare feet with my hands out stretched slightly in front of me, helping me to to fend through the darkness. It dawned on me at that moment I had not been summoned to roll either of my sons over or assist with a night bladder release yet, very unlike them. That thought startled me even more. Worry fought to control me. The night air caused me to shiver slightly as I swiftly moved, and it was only then that I noticed my long hair and tshirt felt quite damp. Not allowing myself any time to waste on any more thoughts, I continued rushing toward the stair case that separated Cody and Josiah's bedroom from mine. A soft glow of light from the outside street lights peeked through the open blinds of our front bay window, illuminating the stair case slightly, helping to light my way just enough to keep me from missing a step. I looked up toward their bedroom from the bottom step, the distance seemed so utterly far. Fear threatening me now, I took the steps two at a time. As I reached the hallway just outside the room they shared, almost instinctively I paused for a second at the closed door, listening for any sound, but hearing nothing in return. My heart now pounding and fear closing in on me I quietly turned the knob. Urgently wanting to rush in to my sons sides, but also deeply aware that my own panic could frighten them from a deep sleep if somehow this has all been a mistake, a panic on my own behalf.
I opened the door, slowly tip toeing, first toward my youngest, Josiah, where he laid, quietly sleeping in his bed. Curled on his side, his breathing steady and slow, a peaceful rhythm. I stood over him looking down as he slept. What ever I heard, if it had been him, was in no way now affecting him. Peacefully he laid there sleeping un-aware of my presence. I turned toward my middle child Cody. Whose bed was across from where Josiah lay. Walking toward him it seemed he also was completely absorbed in a peaceful somber. I stepped back looking at both of my beautiful sons, puzzled at what I had heard or not heard. Clearly I had seen the blinking lights. I was convinced sound had came from this part of the house, this room.
I lifted my damp hair from the nape of my neck, as I stood in the dark,wanting to make sense of what I was doing in their room now. Listening to the quiet I waited, the house was still. Pulling the v-neck of my tshirt away from my collar bone, I now became aware I was more than just damp. No doubt a night sweat. A chill caused me to shutter, I decided I would need to change my shirt before returning to my own bed. Then as if on cue a sweet voice called out to me. Mom, mom I need to go to the bathroom my stomach hurts, a second voice followed with I need to be turned over please.
I smiled to myself, apparently my motherly instincts and fear are present even when I am in a deep sleep. I felt even a bit happy that in my semiconscious state I was alerted "not being called in the night was cause for alarm'. However I felt good. I was where I needed to be, even though very tired, before I knew I would be needed. It did not matter to me how or why, I was wildly awaken during the night, just that I was so deeply connected to my children. Cody only needed to use the bathroom, and soon was comfortably resting again. As I left their room I walked through my sleeping house. All the windows and doors were all securely locked. Even the dog laid curled up a sleep at Josiah's feet, on his bed.
I am sure I have many mom friends who can share in this. The calls in the night and "for many of us it is many calls during the night" that sends us rushing to our child's side. The sleepless nights when we are awaken so many times, that we just give up on the notion of a peaceful sleep, entirely. The panic and the fear that is aroused, because deep down inside, a fear lurks in our subconsciousness. A fear, that one day this call will be accompanied by illness or not be heard by us in time. The many sleepless nights of staying up with a sick child. An almost agonizing fear that it will one day cease to happen at all. I have no doubt I have been given an inner gift. A sense that alerts me in my sleep to come to the aid of my sons. It almost seems, that all the years of caring for my sons has helped my body and mind work as one to alert me. That not hearing a call from my sons in the night is cause for "alarm". Feeling beyond tired at times, but still so grateful, that it is possible, in rare instances to be present even before they need me.
I want to embrace in unity, all of us who can share in the sleepless nights, because of a child in need. My heart goes out to us all for the "mom calls" and in some cases the" dad calls" in the night and during the day. I pray that we all will have the courage and the strength when the call that does not happen sends us running.
I opened the door, slowly tip toeing, first toward my youngest, Josiah, where he laid, quietly sleeping in his bed. Curled on his side, his breathing steady and slow, a peaceful rhythm. I stood over him looking down as he slept. What ever I heard, if it had been him, was in no way now affecting him. Peacefully he laid there sleeping un-aware of my presence. I turned toward my middle child Cody. Whose bed was across from where Josiah lay. Walking toward him it seemed he also was completely absorbed in a peaceful somber. I stepped back looking at both of my beautiful sons, puzzled at what I had heard or not heard. Clearly I had seen the blinking lights. I was convinced sound had came from this part of the house, this room.
I lifted my damp hair from the nape of my neck, as I stood in the dark,wanting to make sense of what I was doing in their room now. Listening to the quiet I waited, the house was still. Pulling the v-neck of my tshirt away from my collar bone, I now became aware I was more than just damp. No doubt a night sweat. A chill caused me to shutter, I decided I would need to change my shirt before returning to my own bed. Then as if on cue a sweet voice called out to me. Mom, mom I need to go to the bathroom my stomach hurts, a second voice followed with I need to be turned over please.
I smiled to myself, apparently my motherly instincts and fear are present even when I am in a deep sleep. I felt even a bit happy that in my semiconscious state I was alerted "not being called in the night was cause for alarm'. However I felt good. I was where I needed to be, even though very tired, before I knew I would be needed. It did not matter to me how or why, I was wildly awaken during the night, just that I was so deeply connected to my children. Cody only needed to use the bathroom, and soon was comfortably resting again. As I left their room I walked through my sleeping house. All the windows and doors were all securely locked. Even the dog laid curled up a sleep at Josiah's feet, on his bed.
I am sure I have many mom friends who can share in this. The calls in the night and "for many of us it is many calls during the night" that sends us rushing to our child's side. The sleepless nights when we are awaken so many times, that we just give up on the notion of a peaceful sleep, entirely. The panic and the fear that is aroused, because deep down inside, a fear lurks in our subconsciousness. A fear, that one day this call will be accompanied by illness or not be heard by us in time. The many sleepless nights of staying up with a sick child. An almost agonizing fear that it will one day cease to happen at all. I have no doubt I have been given an inner gift. A sense that alerts me in my sleep to come to the aid of my sons. It almost seems, that all the years of caring for my sons has helped my body and mind work as one to alert me. That not hearing a call from my sons in the night is cause for "alarm". Feeling beyond tired at times, but still so grateful, that it is possible, in rare instances to be present even before they need me.
I want to embrace in unity, all of us who can share in the sleepless nights, because of a child in need. My heart goes out to us all for the "mom calls" and in some cases the" dad calls" in the night and during the day. I pray that we all will have the courage and the strength when the call that does not happen sends us running.
Saturday, August 31, 2013
surrendering to Labor Day
I knew better. Yet somehow I still allowed myself to become lost in the hopes that my silly romantic dreams would help me through another Labor Day weekend. I stood on my dock peering out to the water. The lake was quiet except for a few families of ducks that swam peacefully in front of me. Pearly white Water lilies danced at the ends of my dock giving the appearance of a floating flower garden. I wanted the calmness of this moment to absorb me, almost begged it to swallow me. Beads of sweat trickled down from the nape of my neck and an occasional breeze gave me a slight cooling sensation where I had pulled my hair back in a knot. I was beginning to feel a slight sting on my bare shoulders from where the sun had beaten down on me earlier, while I had pulled weeds along the shoreline in hopes to keep myself busy and not think about the the MDA and Labor Day . I turned and looked back at the yard feeling a sense of pride as I surveyed the land. I knew I had found a good place for my sons and I, and it pleased me. I had managed more than I had thought possible at one time. I alone had given us a home that we could feel proud of. A home that offered my physically challenged sons comfort and space. I had also achieved an Independence in many aspects that left me feeling at most times very self satisfied. Sighing I wondered though, would I ever get past the feelings that threatened me now, that left me aching for more. I was alone, fighting a flood of emotions that eagerly clawed at me. I wanted desperately to feel anything except this sorrow that I found my self slowly surrendering too.
I had made a futile attempt earlier in the day to workout. Until my arms ached and I felt callouses forming on my hands I vainly attempted pull ups on my new pull up bar, I had assembled and installed in my bedroom door way. With the suggestion of my masseuse and hoping to prove I could defy some effects of aging, aided also with the need to feel physical pain rather than mental anguish left from remembering Past labor Days and what it has come to mean to me- after waiting a half a century for a cure for Muscular Dustrophy, I worked my arms. With my music pounding I tried to get lost in building muscle. Muscle I had accepted long ago my two younger sons would never gain and some day lose completely. It was that very thought that broke my drive and sent me looking outdoors, with my dog at my side, in search of a diversion. Having broken a slight sweat and still needing something more intense to capture my mind I carried the music outdoors. Determined to drown my thoughts I tore at weeds that had crept along my fence. I ripped and pulled cursing under my breath each time a verse in a song would remind me of all the things I longed for. Several hours later I finally found myself standing on my dock looking back at what I had managed to clean up. I stood there, feeling pleased with the physical work I had accomplished and barely aware of the small beads of perspiration that was now decorating parts of my aching body. With my thoughts once again free it wasn't long before tears silently slid down my dirt stained cheeks. There I was, desperately wanting to get past the sadness I was now feeling. Tired of waiting and hoping, tired of feeling defeated and angry that all the strength inside of me was no match for the magnitude of what was ripping at me now. Feeling a bit angry that I had fallen victim to my own sorrow.
I cried. I simply gave in. I surrendered to tears in the hopes that letting go, would release me in some way. With nothing else to do I cried. I also wept because facing this alone simply did not matter to me any more. However this Holiday was not about me. This was a weekend that throughout my entire life has been about all the brave young men and women who like my sons face a devastating terminal disease, every single day. A disease that will slowly and painfully take their lives, but only after years of imprisoning them in an immobile body. This was a time of year, I had long ago accepted, would always be a reminder to me of the immense pain Duchenne brought and the loss these young men struggle with. And with that acceptance I will have to live with knowing that this pain will deepen, leaving me feeling broken and completely consumed with loss. Quite simply there is nothing I can do about it. As hard as it is for me to accept - I know now I am at the beginnings of surrendering to the next phase of seeing my sons lose in this battle. But I will as usual focus on today and rejoice, I have them here with me today.
So this Labor Day Please remember MDA and "A Show of Strength" and give, we need a cure now.
I had made a futile attempt earlier in the day to workout. Until my arms ached and I felt callouses forming on my hands I vainly attempted pull ups on my new pull up bar, I had assembled and installed in my bedroom door way. With the suggestion of my masseuse and hoping to prove I could defy some effects of aging, aided also with the need to feel physical pain rather than mental anguish left from remembering Past labor Days and what it has come to mean to me- after waiting a half a century for a cure for Muscular Dustrophy, I worked my arms. With my music pounding I tried to get lost in building muscle. Muscle I had accepted long ago my two younger sons would never gain and some day lose completely. It was that very thought that broke my drive and sent me looking outdoors, with my dog at my side, in search of a diversion. Having broken a slight sweat and still needing something more intense to capture my mind I carried the music outdoors. Determined to drown my thoughts I tore at weeds that had crept along my fence. I ripped and pulled cursing under my breath each time a verse in a song would remind me of all the things I longed for. Several hours later I finally found myself standing on my dock looking back at what I had managed to clean up. I stood there, feeling pleased with the physical work I had accomplished and barely aware of the small beads of perspiration that was now decorating parts of my aching body. With my thoughts once again free it wasn't long before tears silently slid down my dirt stained cheeks. There I was, desperately wanting to get past the sadness I was now feeling. Tired of waiting and hoping, tired of feeling defeated and angry that all the strength inside of me was no match for the magnitude of what was ripping at me now. Feeling a bit angry that I had fallen victim to my own sorrow.
I cried. I simply gave in. I surrendered to tears in the hopes that letting go, would release me in some way. With nothing else to do I cried. I also wept because facing this alone simply did not matter to me any more. However this Holiday was not about me. This was a weekend that throughout my entire life has been about all the brave young men and women who like my sons face a devastating terminal disease, every single day. A disease that will slowly and painfully take their lives, but only after years of imprisoning them in an immobile body. This was a time of year, I had long ago accepted, would always be a reminder to me of the immense pain Duchenne brought and the loss these young men struggle with. And with that acceptance I will have to live with knowing that this pain will deepen, leaving me feeling broken and completely consumed with loss. Quite simply there is nothing I can do about it. As hard as it is for me to accept - I know now I am at the beginnings of surrendering to the next phase of seeing my sons lose in this battle. But I will as usual focus on today and rejoice, I have them here with me today.
So this Labor Day Please remember MDA and "A Show of Strength" and give, we need a cure now.
Saturday, August 3, 2013
friends
So fast and swift the eagle swooped down, snatching the baby duckling with its hungry claws. I stood frozen trying to comprehend what had just happened before my eyes. The loud devastating cries from its mother tore at my heart. In a blink of an eye with out warning her precious offspring had been snatched from her. I watched in sadness as she floated in circles flapping her wings and crying out to her duckling as he flew further further from our sight. As helpless as she, I stood, only able to watch, as natures unrelenting cruelty of survival played out before me.
I turned to my new found friends, who had delighted us by visiting my sons and I this afternoon at our home, as unexpected as I, they watched too, in almost disbelief. With few words needed, we shared in our sorrow. Unable to turn away from the lake we watched as several other ducks swam out to the grieving mother, encircling her as though offering comfort in the only way they could.
Later that evening as I looked out from my deck overlooking our small lake my thoughts were brought back to the memories of what had happened earlier that day. Sadly, I watched as a mother duck took a leisurely swim with ONE baby trailing behind her. My heart sank again, as I recalled the events that most likely was the cause of what I was now seeing.
I stood feeling almost connected to the sense of loss, I imagined what that mother duck had endured, and the acceptance that she was now forced to face. An unforeseen enemy had unjustly stole from her. Tearing her world apart right before her eyes. Helplessly she was forced to watch as the life she had brought into the world, cared for and loved was cruelly ripped from her with out mercy. Leaving her broken, her dreams shattered, alone and grieving. Now facing the arduous journey of moving past loss and devastation, picking up the pieces of her shattered world and moving forward. Accepting, adapting and surviving tragedy.
I thought momentarily of the wonderful enlightening conversation I had shared with my new friend earlier that day about our sons living with Duchenne Muscular Dystrophy. How blessed I felt having connected with other mothers who understood so well the sorrow and joy this life brought us daily. The unrelenting helplessness we battled with in ourselves as we are forced to watch our boys be viciously attacked by a monster that has no mercy. The acceptance we have grown accustom too as the disease slowly ravishes every muscle with in our beautiful boys. The hurt and sorrow that consumes us at times threatening our very own existence as we are forced to accept the inevitable.
Standing there watching the mother duck swimming with her duckling I have to say she reminded me slightly in some ways of a Duchenne Mother. The courage she had to find to take the last of her brood out to swim. The strength she undoubtedly had to find with in her self to overcome her grief and the acceptance that this event was beyond her power to prevent. That by no fault of her own this had happened to her baby and that somehow this was part of plan that she had no control over. I still felt very troubled by the fact that in order to make this world work- suffering and pain is so very significant, to this big divine plan. A plan her nor I can fully comprehend but have learnt to accept, with courage and dignity. I embraced remembering the circle of friends that was formed around this mother duck almost instantaneously as she cried for her baby. The comfort her friends seemed desperately to want to offer her.
As my thoughts slowly shifted back to my world I tried to focus more on the connections we have to each other in this world. Alone in my thoughts I wanted to some how savor the gifts we are all surrounded with. Most desperately wanting to grasp on to the blessings I have been overjoyed with myself amongst my sadness-if possible. Clinging to the idea of joy in sorrow, once again-finding that to be my foundation of coping. I was still feeling so very connected to the mother duck because of the strength she represented. I also felt comfort knowing, I am truly blessed to have found a few special friends that even in the midst of their own anguish or sorrow, can still find time to extend support and love when I need it most.
I turned to my new found friends, who had delighted us by visiting my sons and I this afternoon at our home, as unexpected as I, they watched too, in almost disbelief. With few words needed, we shared in our sorrow. Unable to turn away from the lake we watched as several other ducks swam out to the grieving mother, encircling her as though offering comfort in the only way they could.
Later that evening as I looked out from my deck overlooking our small lake my thoughts were brought back to the memories of what had happened earlier that day. Sadly, I watched as a mother duck took a leisurely swim with ONE baby trailing behind her. My heart sank again, as I recalled the events that most likely was the cause of what I was now seeing.
I stood feeling almost connected to the sense of loss, I imagined what that mother duck had endured, and the acceptance that she was now forced to face. An unforeseen enemy had unjustly stole from her. Tearing her world apart right before her eyes. Helplessly she was forced to watch as the life she had brought into the world, cared for and loved was cruelly ripped from her with out mercy. Leaving her broken, her dreams shattered, alone and grieving. Now facing the arduous journey of moving past loss and devastation, picking up the pieces of her shattered world and moving forward. Accepting, adapting and surviving tragedy.
I thought momentarily of the wonderful enlightening conversation I had shared with my new friend earlier that day about our sons living with Duchenne Muscular Dystrophy. How blessed I felt having connected with other mothers who understood so well the sorrow and joy this life brought us daily. The unrelenting helplessness we battled with in ourselves as we are forced to watch our boys be viciously attacked by a monster that has no mercy. The acceptance we have grown accustom too as the disease slowly ravishes every muscle with in our beautiful boys. The hurt and sorrow that consumes us at times threatening our very own existence as we are forced to accept the inevitable.
Standing there watching the mother duck swimming with her duckling I have to say she reminded me slightly in some ways of a Duchenne Mother. The courage she had to find to take the last of her brood out to swim. The strength she undoubtedly had to find with in her self to overcome her grief and the acceptance that this event was beyond her power to prevent. That by no fault of her own this had happened to her baby and that somehow this was part of plan that she had no control over. I still felt very troubled by the fact that in order to make this world work- suffering and pain is so very significant, to this big divine plan. A plan her nor I can fully comprehend but have learnt to accept, with courage and dignity. I embraced remembering the circle of friends that was formed around this mother duck almost instantaneously as she cried for her baby. The comfort her friends seemed desperately to want to offer her.
As my thoughts slowly shifted back to my world I tried to focus more on the connections we have to each other in this world. Alone in my thoughts I wanted to some how savor the gifts we are all surrounded with. Most desperately wanting to grasp on to the blessings I have been overjoyed with myself amongst my sadness-if possible. Clinging to the idea of joy in sorrow, once again-finding that to be my foundation of coping. I was still feeling so very connected to the mother duck because of the strength she represented. I also felt comfort knowing, I am truly blessed to have found a few special friends that even in the midst of their own anguish or sorrow, can still find time to extend support and love when I need it most.
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