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.
Saturday, August 31, 2013
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.
Friday, July 12, 2013
forgiving
The End. I stared at the bold type print I was holding. Thoughts flooding me, challenging me on my very own hopes and desires. I had just finished reading my fifth romance novel of the summer. Much to my surprise I was hooked. This story was a western romance. Taking place in Deadwood, South Dakota during the gold rush boom, back in 1876. A town I had visited many years ago with my sons, on our first family vacation with out their father. A trip whose plans began while I was still very much married. A family trip out west that I had at onetime envisioned would draw me and my now ex-husband closer together. A vacation, that instead, and in many ways, marked the beginning of my life as a single mother.
Deadwood, S.D. a tourist town now that draws crowds by the thousands each summer. A place that I simply fell in love with many years ago and hope to revisit again someday. A colorful town boasting with the flavor of the old west. I sat back still holding my book in my hands. Wanting to savor the feelings its paragraphs had stirred in me. Pulling myself back in thought to a time in this world that brought the strong characters of this romantic story to life. A simpler time when we did not question our sexuality. An era when survival demanded hard work. The west where strength, courage and integrity made boys into men and girls into women.
With my eyes closed I tried to envision main street coming alive. I imagined women and men in their traditional roles. Hunky cowboys as they casually rode into town, dusty and perhaps a bit weary from traveling. Tipping their Stetsons out of courtesy as they passed by a few females. The towns few single women smiling back and nodding slightly in response with polite etiquette. Couples happily strolling along arm in arm while out for an evening walk. I smiled to myself, yes like it or not I was hooked on these romance stories, dreaming and fantasizing as I read each one. As a realist this is a very hard thing for me to admit and accept. I believe I am becoming a full bloomed romantic. Starry eyed at the idea and finding my self lost in the silly romantic notions of being swept away by love. Filled with anticipation for the first kiss shared between the main two characters.
I closed the book and studied its cover. No beautiful saloon girl or handsome rugged cowboy donned the front cover. No lump of gold or stage coach pictured, to give way of the journey that laid ahead in its over 400 hundred typed pages. The title simply put, "Forgiving" was scrolled out in large deep rose colored letters. I was dawdling in after thought. Love in its many vast ways had etched it way in my mind leaving me dreaming.
I sat thinking, what next. Do I engage in yet another novel. Loose myself to yet another untamed heart of a character, doomed to embark on a journey exploding with deep emotion. Surely I needed to lay to rest for one day, these sordid love affairs I have been so drawn into reading about lately.
A walk seemed a perfect answer to help me ease away from my new addiction. Not to mention a delight for my beautiful dog Bella to part take in. I chuckled as I attached her new flashing night time leash to her collar while thinking about my writing class experience last fall. When my instructor told me to stop fighting the fact that I was a romantic. "Surrender and stop hiding" she told me during class one day, " and those stories locked inside will flow". I was a bit bothered hearing those words at first. Unconditional Love as a mother I new about, with no end to the words that illustrates my motherly passions. But love between a couple- ooh that's a tough one. I openly admit I still struggle with putting on paper. With a past full of short lived romances and dating disappointments what could I possibly write. Feeling somewhat -in all honesty-that a captive heart for me would seem rather unlikely at this point, but not entirely impossible-after all I am a newly proclaimed romantic. I will somberly admit to those of you who might read this and clearly spell out "I have known love", but there is a profound connection to the heart I deeply desire. As a parent of two medically challenged and terminally ill sons my journey will be met with great sorrow few will ever understand or be equipped to endure. Leaving me deeply guarded with my heartfelt emotions.
So here I was now completely absorbed into reading about the desires of the heart. But, still struggling with the ability to write anything that remotely mentions falling in love. With a child free night to myself, and no plans I was at home alone with my romance books. I looked down at the book again that I had laid to rest on my lap. Its simple cover holding me captive momentarily. The single word title triggering something in me. Drawing me into myself I let my thoughts flow. I felt a need to examine a little of my own soul. Could it be that some of my past actually made me feel connected to the characters I recently read about. I was beginning to understand why I found them so appealing. I was beginning to see that I was not much different from them. Much more to my surprise I noticed something else. These characters not only ardently desired love, but also were in great need of something more.
It can be very enlightening and amazing when you can make a connection, especially so deeply. Yes, these characters needed healing. Healing, yes it was right there, so simple. As much I tried to hide it I was still in need of some healing too. Even after all these years I still was in need of some mending. which is not so easy to admit, because, that might just make me be a bit vulnerable. Secondly, because I have become so engrossed in moving on and finding the courage to face my sorrow to come, I have not paid much attention to what the past had been lacking for me in the first place. So here it was simply laid out before me "Forgiving". In order to continue with healing I had to forgive. But forgiving just who was the question? No sooner had I read the word again and it hit me, like a burst of sunlight. The one person I struggled with the most was in fact me. It is me that stands like a closed window between my past and the present. I would need to forgive myself to continue to heal.
I have a very strong feeling I will connect with someone who will in fact be touched by what I am writing about and will totally understand the depths of the "healing" I am referring too. Powerful when you think about it. It is me holding me back. More empowering it is me who can lead me to change. So I will keep putting my words out there. I will keep reading my romance stories and I keep working on healing. Who knows maybe one day that romance story waiting to be unleashed might just be my own.
Deadwood, S.D. a tourist town now that draws crowds by the thousands each summer. A place that I simply fell in love with many years ago and hope to revisit again someday. A colorful town boasting with the flavor of the old west. I sat back still holding my book in my hands. Wanting to savor the feelings its paragraphs had stirred in me. Pulling myself back in thought to a time in this world that brought the strong characters of this romantic story to life. A simpler time when we did not question our sexuality. An era when survival demanded hard work. The west where strength, courage and integrity made boys into men and girls into women.
With my eyes closed I tried to envision main street coming alive. I imagined women and men in their traditional roles. Hunky cowboys as they casually rode into town, dusty and perhaps a bit weary from traveling. Tipping their Stetsons out of courtesy as they passed by a few females. The towns few single women smiling back and nodding slightly in response with polite etiquette. Couples happily strolling along arm in arm while out for an evening walk. I smiled to myself, yes like it or not I was hooked on these romance stories, dreaming and fantasizing as I read each one. As a realist this is a very hard thing for me to admit and accept. I believe I am becoming a full bloomed romantic. Starry eyed at the idea and finding my self lost in the silly romantic notions of being swept away by love. Filled with anticipation for the first kiss shared between the main two characters.
I closed the book and studied its cover. No beautiful saloon girl or handsome rugged cowboy donned the front cover. No lump of gold or stage coach pictured, to give way of the journey that laid ahead in its over 400 hundred typed pages. The title simply put, "Forgiving" was scrolled out in large deep rose colored letters. I was dawdling in after thought. Love in its many vast ways had etched it way in my mind leaving me dreaming.
I sat thinking, what next. Do I engage in yet another novel. Loose myself to yet another untamed heart of a character, doomed to embark on a journey exploding with deep emotion. Surely I needed to lay to rest for one day, these sordid love affairs I have been so drawn into reading about lately.
A walk seemed a perfect answer to help me ease away from my new addiction. Not to mention a delight for my beautiful dog Bella to part take in. I chuckled as I attached her new flashing night time leash to her collar while thinking about my writing class experience last fall. When my instructor told me to stop fighting the fact that I was a romantic. "Surrender and stop hiding" she told me during class one day, " and those stories locked inside will flow". I was a bit bothered hearing those words at first. Unconditional Love as a mother I new about, with no end to the words that illustrates my motherly passions. But love between a couple- ooh that's a tough one. I openly admit I still struggle with putting on paper. With a past full of short lived romances and dating disappointments what could I possibly write. Feeling somewhat -in all honesty-that a captive heart for me would seem rather unlikely at this point, but not entirely impossible-after all I am a newly proclaimed romantic. I will somberly admit to those of you who might read this and clearly spell out "I have known love", but there is a profound connection to the heart I deeply desire. As a parent of two medically challenged and terminally ill sons my journey will be met with great sorrow few will ever understand or be equipped to endure. Leaving me deeply guarded with my heartfelt emotions.
So here I was now completely absorbed into reading about the desires of the heart. But, still struggling with the ability to write anything that remotely mentions falling in love. With a child free night to myself, and no plans I was at home alone with my romance books. I looked down at the book again that I had laid to rest on my lap. Its simple cover holding me captive momentarily. The single word title triggering something in me. Drawing me into myself I let my thoughts flow. I felt a need to examine a little of my own soul. Could it be that some of my past actually made me feel connected to the characters I recently read about. I was beginning to understand why I found them so appealing. I was beginning to see that I was not much different from them. Much more to my surprise I noticed something else. These characters not only ardently desired love, but also were in great need of something more.
It can be very enlightening and amazing when you can make a connection, especially so deeply. Yes, these characters needed healing. Healing, yes it was right there, so simple. As much I tried to hide it I was still in need of some healing too. Even after all these years I still was in need of some mending. which is not so easy to admit, because, that might just make me be a bit vulnerable. Secondly, because I have become so engrossed in moving on and finding the courage to face my sorrow to come, I have not paid much attention to what the past had been lacking for me in the first place. So here it was simply laid out before me "Forgiving". In order to continue with healing I had to forgive. But forgiving just who was the question? No sooner had I read the word again and it hit me, like a burst of sunlight. The one person I struggled with the most was in fact me. It is me that stands like a closed window between my past and the present. I would need to forgive myself to continue to heal.
I have a very strong feeling I will connect with someone who will in fact be touched by what I am writing about and will totally understand the depths of the "healing" I am referring too. Powerful when you think about it. It is me holding me back. More empowering it is me who can lead me to change. So I will keep putting my words out there. I will keep reading my romance stories and I keep working on healing. Who knows maybe one day that romance story waiting to be unleashed might just be my own.
Friday, July 5, 2013
no grass just fireworks
I stared at the photo in front of me. The smiling faces captivating me, flooding me with thought. I imagined the echoing sound of the water fall behind them cascading down. The cool water slapping hard against the steep rocky incline as it wildly falls against it. Its cool spray reducing the feel of the rising July temperatures. I knew this place where they stood. I had frequented it before with my own eldest child. I smiled almost able to smell the wet earth as I recalled a few of my own memories. This was a place I had at one time visited also with my two youngest sons . A place we ventured out as a family. A time in their lives when they could freely walk along. Occasionally stopping to skip stones across the flowing water. Slowly at this moment now, I somehow began to sense another feeling grasping at me. A yearning calling me. I was happy for my friend with the day she was obviously sharing with two of her children. But I also felt saddened that this was something I had learnt to accept was now in our past. That walking along the banks of that very same stream, had become just a wonderful sweet precious memory for us. A little disturbed that I had let this photo pull me down, I decided to scan a few other photos that other friends had openly displayed on line. Why I wondered was it, moments like this that left me hoping, and wanting to have just a bit more of something. I had undoubtedly created a world that was full of adventure for my boys. But it did not come with out great sacrifice. To pull it it all together it also took compromising, careful planning and much recruiting of outside help for them. I tried to imagine what it might be like to wake up and at the spur of the moment take off with my sons on a days outing. What it might feel like to not have to worry about steps and bathroom accommodations. What it might be like to not have to rely on a helping hand, and chairs with wheels. To have one time where I did not have to worry about accessibility.
I hated the the feeling that was now attempting to creep inside me. I felt even a bit disgusted knowing what it was. Yes, I knew, deep down inside. Masked by a bit of anxiety, it was envy. I envied what I imagined how my friends Fourth of July was being spent. A day spent walking with her teenage daughters, laughing while they hiked along together. Dipping their toes in the cool water. While they spent endless hours enjoying the outdoors, I spent hours inside getting my two sons up and out of bed. Dressing them and feeding them. Finding activities to keep them engaged just so I could hop in the shower and get dressed myself. Actually it wasn't even the fact it was a Holiday and that I had no accessible plans for us, it was simply the fact that like very other day if I didn't go the distance with preparations" it" didn't happen. With out " It" - it meant my boys would be sitting bound to a chair settling for a life of watching the world go by rather than living it.
I went back to the photo after my search to see what else was happening in the online world. We had been invited to view fireworks from a friends apartment. Her offer was tempting but Cody's miner upset stomach had left me feeling uneasy about leaving home, along with the anxiety of transporting them alone late at night. So for this night the best that I could offer was ourselves at home and enjoying time alone together. Time spent with just me and my two younger sons, in our comfortable accessible environment. Engaged in activities that could be enjoyed from a wheelchair.
Not to long ago someone said to me when you peek over the fence the grass always looks greener. Yep we have all heard it. Well I do not want my friends grass. I do not even care is she has a garden. Actually I find grass a burden in my life, the less of it would be better. A paved path would suit me and my two younger sons much better. Because then the terrain would be just be a bit easier for our wheelchairs to travel over. Josiah would have loved to view fireworks on a live location, such a small request. But he has, with out complaint, settled to watch them on his ipad- due to our current minor difficulties. Because of great guilt on my failure to not strategically plan ahead, I have in return promised him we would watch the State Fairs fireworks live at the MN Fair.
I don't know if my friend watched any Fourth of July fireworks from the beautiful location she was at earlier. I imagined she no doubt had a wonderful afternoon planned outdoors with family and friends. But at the risk of being human, it was just a moments yearning to want just a bit more, as selfish as that might sound to some- with out all the hurdles, searching, planning and laboring help for it.
I hated the the feeling that was now attempting to creep inside me. I felt even a bit disgusted knowing what it was. Yes, I knew, deep down inside. Masked by a bit of anxiety, it was envy. I envied what I imagined how my friends Fourth of July was being spent. A day spent walking with her teenage daughters, laughing while they hiked along together. Dipping their toes in the cool water. While they spent endless hours enjoying the outdoors, I spent hours inside getting my two sons up and out of bed. Dressing them and feeding them. Finding activities to keep them engaged just so I could hop in the shower and get dressed myself. Actually it wasn't even the fact it was a Holiday and that I had no accessible plans for us, it was simply the fact that like very other day if I didn't go the distance with preparations" it" didn't happen. With out " It" - it meant my boys would be sitting bound to a chair settling for a life of watching the world go by rather than living it.
I went back to the photo after my search to see what else was happening in the online world. We had been invited to view fireworks from a friends apartment. Her offer was tempting but Cody's miner upset stomach had left me feeling uneasy about leaving home, along with the anxiety of transporting them alone late at night. So for this night the best that I could offer was ourselves at home and enjoying time alone together. Time spent with just me and my two younger sons, in our comfortable accessible environment. Engaged in activities that could be enjoyed from a wheelchair.
Not to long ago someone said to me when you peek over the fence the grass always looks greener. Yep we have all heard it. Well I do not want my friends grass. I do not even care is she has a garden. Actually I find grass a burden in my life, the less of it would be better. A paved path would suit me and my two younger sons much better. Because then the terrain would be just be a bit easier for our wheelchairs to travel over. Josiah would have loved to view fireworks on a live location, such a small request. But he has, with out complaint, settled to watch them on his ipad- due to our current minor difficulties. Because of great guilt on my failure to not strategically plan ahead, I have in return promised him we would watch the State Fairs fireworks live at the MN Fair.
I don't know if my friend watched any Fourth of July fireworks from the beautiful location she was at earlier. I imagined she no doubt had a wonderful afternoon planned outdoors with family and friends. But at the risk of being human, it was just a moments yearning to want just a bit more, as selfish as that might sound to some- with out all the hurdles, searching, planning and laboring help for it.
Sunday, December 30, 2012
Celebrating Joy
I love Christmas time. Actually, I love all holidays where my family gathers together. I am drawn into the joy of wanting to celebrate the ritual -of thanking each other for the time we share together. Deepening the bonds that hold us tightly connected in our hearts. Sharing with my loved ones memories we have made together, praising God for all he has given us. Hoping to to share in spreading the peace and joy that was meant for us all.
So it is Christmas that offers me the most opportunity to rejoice. Yet it is this same magical season that finds me desperately needing and wanting. Yearning to rejoice in something, anything, I have gained, but tormented by remembering what I have lost. Delighted, I have family that shares, with love and admiration for my sons. Secretly still though, hiding my sorrow. So with much work I put to practice mastering the skill of feeling JOY IN SORROW. It is Christmas, and I rejoice that I am so blessed to have my sons with me. Happiness flooding me, because, also once again my sisters and their families join us in celebrating. Pleased beyond words, that I am able to be surrounded with love and share all this with my sons. But some what Saddened, that a Christmas lost, has even entered my mind. Alone in thought, facing realistic realization of what the future holds, in the darkest corners of my mind. Also feeling somewhat angry that this is a fact in my world and in my sons world. Feeling also that I must state-Absolutely not needing to hear some unsympathetic remark that there is hope, from a fragment of a human being.
So I watch as Cody struggles to lift his fork to his mouth while we feast and also fight to hide my tears as Josiah is in need of assistance to help him rip off the wrapping paper from his gifts. My eyes follow my niece and nephew as they move so freely about passing out the gifts. Rejoicing they are here with us, but remembering a Christmas not to long ago, when it was my own child under the tree pulling out a present to pass around. Wanting it to be my sons joining my nieces and nephews as they run to go out side and play on the icy lake. Feeling sad that when my beautiful niece Kayla asked if Josiah and Cody could join them I had to decline, because I was limited in my own physical capabilities. I simply could not safely maneuver them down the icy hill leading to the lake let alone help them through the snow. So I embrace the joy I feel as my sons accept playing with Legos.
I watch in awe of the glory that surrounds me. Love filling me as my nephew Blake kisses my sons, his cousins good night on the forehead then, makes time to cuddle by me. Holding captive the warm feeling I have as out of town friends take time to spend with us. Graciously, accepting whatever accommodations I can give them, just happy to be able spend the night. Embracing all the merriment brought to my home, by loving family and friends. Making new memories of another Christmas
Hoping that the joy I see in my sisters eyes, as they celebrate with their husbands, might some day be in mine. Shyly, watching as they toast Christmas cheer with a kiss. Wanting desperately, to know that kind of love they share together. Yes, it is Christmas, soon to be a New Year and I celebrate. For a split moment I wonder how I appear to them. Holding my sons in my arms, laughing, smiling, and hoping that I am hiding the fear, the sorrow, and the loss I feel. Wishing that the emotions pulling at me now would vanish, or somehow for just a mere second, leave me to feel anything other than sorrow and joy at the same time- for just once.
We celebrate a joyous Holy Holiday. Me beaming when we attend Christmas eve mass where, My eldest son plays his violin. So proud, as I sit, alone, amongst my sisters and their Husbands in our pew. Wishing the church was remotely accessible, to accommodate Cody and Josiah. Thinking back to a time when I too had someone special next to me, along with my two younger children, as Zach played for the service. This year feeling thrilled, when my overnight guests teenage son agreed to adorn my Santa suit and make a surprise appearance outside our back door, to give my boys more Christmas excitement.
Somehow just now I realize, not from venting, but by my writing, sharing from my heart, I begin to see- it doesn't matter to me anymore how or why these feelings are coming to me-Just that I am blessed to have them and share them. What ever JOY I can find, I will take it. Run with it. Though I may shed tears to find it-I embrace it just the same.
As only God can do, the timing (his timing) was perfect- I walked in on Cody today, scooting down the hallway in his desk chair heading to the family room from his bedroom across the house. He looked up at me and said "let me do it myself mom." I stepped back and watched him scoot across our rambler, tears of joy running down my face. ( yes joy with sorrow still) But so intended for me. Joy that I shared with Cody. I in my human state of mind of course wished I had someone else to share that instant of a moment with other than just Cody. But I am learning- this was something God intended for me, just me. Perhaps because I too in some obscure way am special.
It is the Christmas season and a New year approaches. My thoughts and prayers are with so many of my DMD friends that are also struggling at this time with something. I pray that you all will be surrounded by love and joy, And that you will always find strength especially when you need it most. MERRY CHRISTMAS and HAPPY NEW YEAR!!!
So it is Christmas that offers me the most opportunity to rejoice. Yet it is this same magical season that finds me desperately needing and wanting. Yearning to rejoice in something, anything, I have gained, but tormented by remembering what I have lost. Delighted, I have family that shares, with love and admiration for my sons. Secretly still though, hiding my sorrow. So with much work I put to practice mastering the skill of feeling JOY IN SORROW. It is Christmas, and I rejoice that I am so blessed to have my sons with me. Happiness flooding me, because, also once again my sisters and their families join us in celebrating. Pleased beyond words, that I am able to be surrounded with love and share all this with my sons. But some what Saddened, that a Christmas lost, has even entered my mind. Alone in thought, facing realistic realization of what the future holds, in the darkest corners of my mind. Also feeling somewhat angry that this is a fact in my world and in my sons world. Feeling also that I must state-Absolutely not needing to hear some unsympathetic remark that there is hope, from a fragment of a human being.
So I watch as Cody struggles to lift his fork to his mouth while we feast and also fight to hide my tears as Josiah is in need of assistance to help him rip off the wrapping paper from his gifts. My eyes follow my niece and nephew as they move so freely about passing out the gifts. Rejoicing they are here with us, but remembering a Christmas not to long ago, when it was my own child under the tree pulling out a present to pass around. Wanting it to be my sons joining my nieces and nephews as they run to go out side and play on the icy lake. Feeling sad that when my beautiful niece Kayla asked if Josiah and Cody could join them I had to decline, because I was limited in my own physical capabilities. I simply could not safely maneuver them down the icy hill leading to the lake let alone help them through the snow. So I embrace the joy I feel as my sons accept playing with Legos.
I watch in awe of the glory that surrounds me. Love filling me as my nephew Blake kisses my sons, his cousins good night on the forehead then, makes time to cuddle by me. Holding captive the warm feeling I have as out of town friends take time to spend with us. Graciously, accepting whatever accommodations I can give them, just happy to be able spend the night. Embracing all the merriment brought to my home, by loving family and friends. Making new memories of another Christmas
Hoping that the joy I see in my sisters eyes, as they celebrate with their husbands, might some day be in mine. Shyly, watching as they toast Christmas cheer with a kiss. Wanting desperately, to know that kind of love they share together. Yes, it is Christmas, soon to be a New Year and I celebrate. For a split moment I wonder how I appear to them. Holding my sons in my arms, laughing, smiling, and hoping that I am hiding the fear, the sorrow, and the loss I feel. Wishing that the emotions pulling at me now would vanish, or somehow for just a mere second, leave me to feel anything other than sorrow and joy at the same time- for just once.
We celebrate a joyous Holy Holiday. Me beaming when we attend Christmas eve mass where, My eldest son plays his violin. So proud, as I sit, alone, amongst my sisters and their Husbands in our pew. Wishing the church was remotely accessible, to accommodate Cody and Josiah. Thinking back to a time when I too had someone special next to me, along with my two younger children, as Zach played for the service. This year feeling thrilled, when my overnight guests teenage son agreed to adorn my Santa suit and make a surprise appearance outside our back door, to give my boys more Christmas excitement.
Somehow just now I realize, not from venting, but by my writing, sharing from my heart, I begin to see- it doesn't matter to me anymore how or why these feelings are coming to me-Just that I am blessed to have them and share them. What ever JOY I can find, I will take it. Run with it. Though I may shed tears to find it-I embrace it just the same.
As only God can do, the timing (his timing) was perfect- I walked in on Cody today, scooting down the hallway in his desk chair heading to the family room from his bedroom across the house. He looked up at me and said "let me do it myself mom." I stepped back and watched him scoot across our rambler, tears of joy running down my face. ( yes joy with sorrow still) But so intended for me. Joy that I shared with Cody. I in my human state of mind of course wished I had someone else to share that instant of a moment with other than just Cody. But I am learning- this was something God intended for me, just me. Perhaps because I too in some obscure way am special.
It is the Christmas season and a New year approaches. My thoughts and prayers are with so many of my DMD friends that are also struggling at this time with something. I pray that you all will be surrounded by love and joy, And that you will always find strength especially when you need it most. MERRY CHRISTMAS and HAPPY NEW YEAR!!!
Saturday, December 1, 2012
There was not a trace of snow to be found, as I scanned the courtyard. No matter, I thought to myself, as we watched a sleigh with two reindeer attached pull up in front of us. Eagerly, my two younger sons Josiah and Cody waited at my sides. Amazingly along the sides of the sleds runners, were wheels. I smiled as I explained to Josiah, that this was exactly how Santa's sleigh must be, so he could visit warmer climates that did not ever get snow. Excited we approached the sled that harnessed Donner and Blitzen. Cheerfully we were informed that the reindeer were a bit anxious themselves and on a ride earlier, had attempted to speed up there pace. Warning us we could feel a bit of a jerk, should they decide to gain speed again. However, they would do their best to keep the sled grounded and not let us take off in flight. Josiah's beautiful brown eyes widened as he smiled- the mere thought of this undoubtedly sounded utterly fantastic. Flying through the air just seemed to be in their blood-we joked together.
I sized the sleigh up along with my brother in-law Bill, who had graciously agreed to accompany us today, along with his wife, my sister Marie. We are so blessed, with both of them always lovingly and eager to assist us, whenever possible. Lifting my sons high enough to place them inside the sleigh was our only posing problem. As if on Que, and not letting us fret for a moment, two men approached us offering to help load both of my sons. With in seconds it seemed we were all comfortably seated covered with a blanket and off on our journey.
Our ride was wonderful, and it was the first time my sons had ever been in a real open winter sleigh. Having reindeer pull it made our experience even more festive, with the Holiday spirit seeming to be all around us. It did not matter to us nor the reindeer that there was no snow to be found anywhere. Relaxing during the ride I had decided it was a most pleasant joyous way to share with my sons the beginning of the 25 days of Christmas.
It is this magical season, where joyous events can occur and often brings out the warmest welcomes, filling us with the wonder and awe of the season. At the end of the ride as I lifted my Josiah in my arms-(while still in the open sleigh)- to lower him into the waiting arms of a kind stranger, that instantly filled my heart with the magic of the season. As I stood holding Josiah, like Mary may have held Jesus on that first night, and welcomed strangers that came to adore her infant son, I could not help but feel joy, that this was all made special for my sons. This stranger carefully listened to my instructions, and with waiting arms embraced my youngest. I watched as he carefully placed Josiah back in his waiting wheelchair. Then swiftly, he turned around to offer me his hand to help assist me in getting down.
It is not always easy for me to ask for help on this arduous journey with my sons. However, I try to not let my pride prevent me from accepting a helping hand when ever offered. For I know, often I am giving back by allowing others to experience the joy in helping and giving of themselves. In this Christmas season as I reflect on the good Blessings we have received by the generosity of so many, I give thanks to our Lord for allowing me to see and feel Joy in Sorrow.
I sized the sleigh up along with my brother in-law Bill, who had graciously agreed to accompany us today, along with his wife, my sister Marie. We are so blessed, with both of them always lovingly and eager to assist us, whenever possible. Lifting my sons high enough to place them inside the sleigh was our only posing problem. As if on Que, and not letting us fret for a moment, two men approached us offering to help load both of my sons. With in seconds it seemed we were all comfortably seated covered with a blanket and off on our journey.
Our ride was wonderful, and it was the first time my sons had ever been in a real open winter sleigh. Having reindeer pull it made our experience even more festive, with the Holiday spirit seeming to be all around us. It did not matter to us nor the reindeer that there was no snow to be found anywhere. Relaxing during the ride I had decided it was a most pleasant joyous way to share with my sons the beginning of the 25 days of Christmas.
It is this magical season, where joyous events can occur and often brings out the warmest welcomes, filling us with the wonder and awe of the season. At the end of the ride as I lifted my Josiah in my arms-(while still in the open sleigh)- to lower him into the waiting arms of a kind stranger, that instantly filled my heart with the magic of the season. As I stood holding Josiah, like Mary may have held Jesus on that first night, and welcomed strangers that came to adore her infant son, I could not help but feel joy, that this was all made special for my sons. This stranger carefully listened to my instructions, and with waiting arms embraced my youngest. I watched as he carefully placed Josiah back in his waiting wheelchair. Then swiftly, he turned around to offer me his hand to help assist me in getting down.
It is not always easy for me to ask for help on this arduous journey with my sons. However, I try to not let my pride prevent me from accepting a helping hand when ever offered. For I know, often I am giving back by allowing others to experience the joy in helping and giving of themselves. In this Christmas season as I reflect on the good Blessings we have received by the generosity of so many, I give thanks to our Lord for allowing me to see and feel Joy in Sorrow.
Sunday, October 7, 2012
I found myself tonight looking for soft music to help set the mood to help me write. While I wanted something inspiring I also wanted it to be soothing. After playing several of my favorite popular pop hits -and still no flow of thought, I decided to try a more spiritual approach. My search ended when I came a across Phillip Phillips "Home". How fitting I thought, given the weekends course of events.
I listened to his beautiful strong voice and moving lyrics. He definitely was one of my favorite male recording artist. His words reached inside of me giving me much more than I imagined to think about.
I reminisced momentarily about dinner out tonight with my youngest son Josiah. The uneasiness he felt from a near by table as they occasionally looked at him and the approach I decided to take to help him overcome his uncomfortableness. I had thought about rearranging our seats at the table. Putting his back to the situation would most certainly ease any apprehension he felt and allow him to escape stares. But this was not how I wanted to teach my son to deal with situations that left us feeling uneasy. Like the lyrics in the song I listened to tonight I wanted Josiah to not let fear control him. I wanted him to feel every where he went he was welcomed and accepted and NEVER ALONE. So turning to the table behind me I gave a fearless hello at the eyes that had glanced in our direction.
I spent time later in the evening discussing with Josiah that the looks he might receive are not meant to make him feel self conscience. More often than not it is empathy if anything at all. Most importantly I wanted him to know he is loved by so many. I also wanted to help him feel confident and proud of who he was. We talked about how many of us have special things about our appearances that might not be labeled as beautiful by the fashion world , such as; being over weight, crooked teeth, thinning hair or wrinkles around the eyes to name a few. But each and everyone of us are created by God and are beautiful. In our own unique special way we are beautifully different-just like snow flakes no two exactly the same.
I tucked Josiah in tonight, before we said our good nights, I snuggled in next to him and we listened to Phillip Phillips sing "Home" on youtube. When the song was over Josiah told me he was not going to let the demons make him afraid. That was a wonderful idea I told him, and it was exactly what I had hoped he would say.
We might not always have nights that work out so nicely. One of the females from the table behind me gave Josiah a cupcake from their party tray. Josiah smiled at her for the kind gesture and accepted her treat. We enjoyed our dinner together and I felt happy that the experience was a good one for us both. I felt relieved that Josiah was not as troubled by the looks he felt upon him tonight. But after Josiah fell asleep I was left with so much more to think about.
Cody my middle son went to his homecoming dance this year. This was his very first dance and although I was excited and proud of him, I felt fear. Fear because his disease posed another problem socially. Cody bravely set out to attend this dance with out a group of friends or classmate to hang with. He and his para from school arranged to meet at the dance. Cody assured me he enjoyed his time with Julie -his para, who graciously gave up her time to spend an evening hanging out with my teenage son, however he admitted the night left him feeling a bit left out. He did not dance with friends or have any interaction with his classmates. He told me he received a few smiles but mostly looks. Looks that left him a little self conscious. What Cody could not tell me, the photos taken on the camera I sent with him showed me. His pictures were all of him alone.
Yes, I could hire Cody a date easily. I could even keep that secret from him. I can not however make someone be his friend and I also can not shield him from the harsh reality of the world. I can let him hold on to me as long as possible but like all teenagers he wants to soar and travel down unfamiliar roads. This new level he has reached I embrace, as much as it scares me, I rejoice that Cody faced his demon and went to the dance alone, confident and proud.
We live in times that are truly trying to address bullying and social acceptance on many levels. I have taken several steps in helping to approach the obstacles Codys physical and mental impairments present. At his last IEP meeting this past week I enlightened his school staff on the social aspect Cody was challenged with recently. We discussed several ways to try to attempt to help Cody feel a bit more accepted amongst his peers. Unfortunately the answer is not a simple one, not for my son or any teenager faced with the longing to belong. So it brings me to think more about the demons that feel all of us with fear, as in Phillips song.
My boys are home tonight, tucked in bed safely, knowing they are loved and have a place they call home. I say good night with one thought- just imagine, how it would feel if we never had to feel alone and if the world felt like our home where ever we went. So I ask when you see that someone that might be different from you in some obvious way, smile at them even offer a hello, you might just be the ONE friendly face they see.
I listened to his beautiful strong voice and moving lyrics. He definitely was one of my favorite male recording artist. His words reached inside of me giving me much more than I imagined to think about.
I reminisced momentarily about dinner out tonight with my youngest son Josiah. The uneasiness he felt from a near by table as they occasionally looked at him and the approach I decided to take to help him overcome his uncomfortableness. I had thought about rearranging our seats at the table. Putting his back to the situation would most certainly ease any apprehension he felt and allow him to escape stares. But this was not how I wanted to teach my son to deal with situations that left us feeling uneasy. Like the lyrics in the song I listened to tonight I wanted Josiah to not let fear control him. I wanted him to feel every where he went he was welcomed and accepted and NEVER ALONE. So turning to the table behind me I gave a fearless hello at the eyes that had glanced in our direction.
I spent time later in the evening discussing with Josiah that the looks he might receive are not meant to make him feel self conscience. More often than not it is empathy if anything at all. Most importantly I wanted him to know he is loved by so many. I also wanted to help him feel confident and proud of who he was. We talked about how many of us have special things about our appearances that might not be labeled as beautiful by the fashion world , such as; being over weight, crooked teeth, thinning hair or wrinkles around the eyes to name a few. But each and everyone of us are created by God and are beautiful. In our own unique special way we are beautifully different-just like snow flakes no two exactly the same.
I tucked Josiah in tonight, before we said our good nights, I snuggled in next to him and we listened to Phillip Phillips sing "Home" on youtube. When the song was over Josiah told me he was not going to let the demons make him afraid. That was a wonderful idea I told him, and it was exactly what I had hoped he would say.
We might not always have nights that work out so nicely. One of the females from the table behind me gave Josiah a cupcake from their party tray. Josiah smiled at her for the kind gesture and accepted her treat. We enjoyed our dinner together and I felt happy that the experience was a good one for us both. I felt relieved that Josiah was not as troubled by the looks he felt upon him tonight. But after Josiah fell asleep I was left with so much more to think about.
Cody my middle son went to his homecoming dance this year. This was his very first dance and although I was excited and proud of him, I felt fear. Fear because his disease posed another problem socially. Cody bravely set out to attend this dance with out a group of friends or classmate to hang with. He and his para from school arranged to meet at the dance. Cody assured me he enjoyed his time with Julie -his para, who graciously gave up her time to spend an evening hanging out with my teenage son, however he admitted the night left him feeling a bit left out. He did not dance with friends or have any interaction with his classmates. He told me he received a few smiles but mostly looks. Looks that left him a little self conscious. What Cody could not tell me, the photos taken on the camera I sent with him showed me. His pictures were all of him alone.
Yes, I could hire Cody a date easily. I could even keep that secret from him. I can not however make someone be his friend and I also can not shield him from the harsh reality of the world. I can let him hold on to me as long as possible but like all teenagers he wants to soar and travel down unfamiliar roads. This new level he has reached I embrace, as much as it scares me, I rejoice that Cody faced his demon and went to the dance alone, confident and proud.
We live in times that are truly trying to address bullying and social acceptance on many levels. I have taken several steps in helping to approach the obstacles Codys physical and mental impairments present. At his last IEP meeting this past week I enlightened his school staff on the social aspect Cody was challenged with recently. We discussed several ways to try to attempt to help Cody feel a bit more accepted amongst his peers. Unfortunately the answer is not a simple one, not for my son or any teenager faced with the longing to belong. So it brings me to think more about the demons that feel all of us with fear, as in Phillips song.
My boys are home tonight, tucked in bed safely, knowing they are loved and have a place they call home. I say good night with one thought- just imagine, how it would feel if we never had to feel alone and if the world felt like our home where ever we went. So I ask when you see that someone that might be different from you in some obvious way, smile at them even offer a hello, you might just be the ONE friendly face they see.
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