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Friday, December 30, 2011

Lost in my thoughts I walked slowly through the mall. Remnants of Christmas still lingered in the store front windows, next to large sale signs. Unlike the weeks before Christmas the crowds of mall shoppers had diminished. However, tonight youthful noise bustled all around me. I noticed a few groups of challenged young adults casually strolled around shopping with PCA's. No doubt the mild weather and low crowds made for a pleasant evening out. I smiled to my self as I watched one group gather at the pet store window. Laughing, as they watched two playful puppies wrestle around. It reminded me of my Cody and Josiah when occasionally we ventured out to the mall stopping at the same pet shop. I envision momentarily Cody with his classroom, a group very similar. I continued on my way to my next stop, feeling very happy to have been able to see how much joy watching those puppies gave them.

Behind me as I walked to one end of the mall I could not help but over hear the giggling of a small group of teenage girls. At one point it was almost as if the girls were walking next to me. As I glanced over, I immediately discovered what they had found so entertaining. Held out in one young females hand was a cell phone. On the screen she had captured in video the young man that had been walking ahead of me. Pointing and laughing, the group of (little Barbie want to be's) followed him filming. Partially slumped forward and slightly limping he strolled along. Hopefully I prayed, he was unaware. I felt absolute sorrow that his difficulties were an amusement. Turning to the girl holding the cell phone I remarked her behavior along with her friends was absolutely cruel. Not to any surprise she retorted back "old bitch" and laughed. I know that at best I only managed to brake up their mean girl party momentarily. While the groups attention was diverted to me and what they had managed to capture on tape, I watched as he exited the mall.

As the girls walked past me giggling I wanted to say something more. The impact of what had happened hovered over me, moving me more than I wanted. I could not help but think, this was the same mall my Cody had visited with his special Living Skills class. It saddened me deeply that perhaps this was the welcome my own beautiful son and his friends may have experienced at some time. On many occasions Cody has preferred to stay home rather than venture out into the community. Desperately, I did not want this to be the reason. I did not want to imagine that some how he had been subjected to bullying with out my or his teachers awareness. Both my sons have commented on the fact, they are very aware some people stare at times and it makes them a bit uncomfortable. Angered a bit at myself that I did not do more I left the mall. I knew that had it been my son I saw being victimized, I would have reacted much, much more.

I talked to my sons the next day about bullying. Cody very casually said "yep, sometimes people are just mean". "You just got to move away from them." Josiah simply told me he did not like mean people very much. I felt better that they did not have some deep hurt they were carrying around.

I wish I could have been more forward or found some way to humiliate those girls. I have to forgive myself for not being more courageous. It is my hope that I can grow from the courage I see in those suffering day to day, in a world that can be very unkind at times, and not so caring. I can embrace being called an old bitch, look out. On that note I now understand why Cody gave a Barbie he had gotten a hold of when he was young a haircut.

Wednesday, December 28, 2011

Gently I laid my hand across Josiah's chest. Even before I could feel his heart racing I could see beneath his shirt, rapid palpitating. Fear began to invade me as I looked into his deep brown eyes. Josiah knew what was happening, softly he described his symptoms to me while I adjusted his thin body on the bed. Trying to give comfort to both of us, I reminded Josiah of his last visit with his cardiologist and our discussion. Following her instructions I put a cool damp wash cloth across his head. His eyes followed me as though he was trying to read my face, softly he asked me if he would be okay. With out hesitation I answered yes. But my mind fought other thoughts.

I sat next to Josiah holding one of his hands in mine and placing my other on his chest. Definitely it was happening again. The rapid heart rate episode that had put Josiah in the hospital six months earlier was repeating itself now. I was given a completely logical explanation and diagnosis of what was happening with Josiah. I had been assured while these episodes are quite frightening and do require awareness an emergency room trip will not be necessary if he is able to effectively calm his heart rate by resting. However should these episodes continue to happen there is some great concern. So here it was again, a reminder of just how much control Duchenne had over us.

Christmas was in three days, that notion rested heavily on Josiah's mind. He did not want to spend the holiday in bed. As my Josiah and I waited out the rapid beating together I tried to find things to help take his mind off our present concern. I tried to talk about what Santa might bring for presents. However Josiah had other things he needed answered and the question was- Is Christmas celebrated in heaven? He needed strength from me now and hiding my own fear was slowly becoming harder. Fast this was becoming quite an emotional time of year for me, not only did Christmas remind me of the anniversary of my mothers passing but also of the child I lost in a miscarriage. I curled up next to Josiah holding him close, telling him this time of year is so magical. It is celebrated in so many different ways such as Christmas, Kwanzaa, Hanukkah. Heaven most likely celebrates in the most glorious way. Most importantly I told him I do believe in Christmas miracles and he was mine.

Josiah's heart rate was elevated for 15 minutes. He rested for a little over an hour and then asked to be helped to sit up to play Lego's. He did not complain of anything the rest of the day. It was a very long fifteen minutes while I watched over him. I battled with my self resisting to call 911, trusting in the instructions of his medical staff and pleading with heaven. By night fall I surrendered to tears in my room alone. Tears because I was so thankful that Josiah was better and that somehow I always managed to be what my sons needed. Tears because I am human and at the end of most days I go to bed holding my breath afraid that somehow it might not go so well next time. Tears also because at the most wonderful time of the year, I am reminded once again of the magnitude of how alone and helpless we can feel in this world. Tears because of the guilt I felt in a weak moment, wanting just this one time after consoling my son, to be held.

Monday, November 28, 2011

I marveled at the very intense expression on my nephews face as I looked at the photos of him running in a track meet. With his lips half curled, caught in a snarling grin, I could almost feel the intensity of his attempt to catch up to the runner in front of him. His long sleek limbs, stretched in a paused motion, defining his athletic toned muscles pushing against gravity. I smiled to myself remembering the clumsy toddler he once was. The little boy who waddled with a silly half frown on his large bawled Charlie Brown head, following awkwardly  behind my son Cody, as they played together when they were very young.

Desperately I wanted to be enveloped in my sisters joy as she shared her photos with me. Inside I struggled. Feeling almost embarrassed that I secretly wept looking at his strong young healthy body. As happy as I was for my nephew Blake and his mother at all his athletic achievements, I could not help but quietly mourn the loss I shared with Josiah and Cody as their muscles weakened daily. Damn, I hated Duchenne. What she shared with her son tormented me in the most covert way. I fought hard not to let the adolescence of my nephew remind me of limitations that were now apart of my sons world. I delighted as best I could in sharing with my sister different events that surrounded our lives. While she told me about track meets, Lacrosse games, and Blake learning to drive, I spoke of Dr. appointments, Specialist  and swim therapy.

Why was it, I wondered that the holidays we shared as a family somehow often left me feeling awkward, and somewhat inadequate, as a human. Like somehow, I just did not measure up to the world around me. I was with family that I loved and family that loved me back. Relatives that cherished my sons. Yet, I struggled with being a single mom next to my happily married sisters. I struggled with feelings of helplessness when maneuvering my sons outside our home. Almost alarmingly  to myself, I found myself fighting diligently to hide my overwhelming sense of the loss I felt, watching all of my nephews approach their teen years. Age and achievements went together so well in their ambulatory world. Where age meant loss in the world I shared with my  two younger sons.. It pained me deeply to not be able to completely rejoice inside, for all the glory in my nephew's achievements. I felt a slight disgust with the anguish I tried to bury in me. Somehow, I knew I had to set myself free from the hold I had allowed Duchenne to have on me, once again.

I entered the room where my Josiah and Cody had been playing at my sisters home. We had been visiting for Thanksgiving weekend and she graciously had given up her bedroom for my sons and I to share. There waiting for me was my simple joy to pull me back. Back to the loving world I shared with my sons. Cody had manged to reach for a post-it note with his very limited strength.    Plainly he wrote some X's and O's . He then had managed to scoot in a desk chair on wheels across the room to a near by bureau. Out stretching his arms  he attached it to a photo sitting on my sisters bureau. The photo was of my sisters beloved dog, Angel.  A long haired tailless shihtzoo   that had passed away earlier this past spring. His note brought tears to my sisters eyes when she followed me into the room and saw it. Cody had touched her deeply with his very sweet gesture of love. I stood next to her sharing silently in the realization of the magnitude of effort Cody had put fourth to perform this gesture of love.  He had managed to use limbs  that  barely had any muscle strength to propel against carpet and defy gravity.

My sons may never run in races or play sports. While they watch their cousins strive to be first or the best in sports they will battle in a fight for their life, against a disease that shows no mercy. There cognitive delays will be another constant struggle for them. I will most undoubtedly continue to hit low moments that will rip at my heart and often leave me feeling broken and beaten. But with that I will also be rejoiced in pure amazement at the acts of love my sons will willingly distribute for no reasons other than to express and share love. This Thanksgiving though I am so thankful I have once again been blessed to see beauty in such small acts of kindness.

Thursday, November 10, 2011

When I walked

My Josiah asked me today if I can remember when he walked. So simple and matter of fact, looking at me while I helped him dress, he waited for my response. I stopped and looked down into his beautiful deep brown eyes. Half afraid where this may be headed with memories of him walking starting to flood my mind, I searched his face for something of a hint to what might be coming next. He looked at me with his soft gentle features, patiently waiting for me to answer.

Yes, I did remember when he could walk. Images of his slender young body moving freely, flashed before me. I ached for those days and wondered how often he thought about them. How much was my little boy holding in? It was only a little more than a year ago that he could still take a few short steps independently. Now not even standing was possible. Silently I mourned that loss too. "Yes Sweetie", I told him" I do remember". Looking at me, he said he wished he still could. Its these moments that rip at my already broken heart. Filling me with so much sorrow. Oh how I wished that with every part of my being that too. Hiding my own pain, I held him in my arms letting him recall his ambulatory days.

Josiah spoke some more while I continued to dress him. Ever so often an image of him flashed through my mind while we talked. I pictured him walking on the beach, standing in our new house. Walking at our old house from room to room. I remembered him walking up stairs. Finally he paused and asked if he would ever walk again. There it was, what I feared. Laid out in front of me, so simply put. My heart sunk. All I could offer him was hope. That dreaded four letter word. The word we cling to when there is nothing else. The word that keeps us from giving up.

Today however, I wanted to scream this sucks, its awful, I hate it too. I did not have words of encouragement ready to spill out. I did not feel or see the light at the end of the tunnel. All I knew was while we mourned his loss of mobility, I somehow have to help him move on. Helping him to have hope seemed in may ways to not be enough. Josiah could remember walking and all its glory. He could recall when he was stronger. He knew what he once was able to do. He also knew the pain caused from remembering. The sense of loss he felt now and the constant fear he lives with, knowing he will loose more strength.

Before I could find the right words, my precious son told me it sucked and he hated not being able to walk. My eyes watered, as his eyes filled with tears, letting me know how much this pained him right now. Cradling him in my arms, we cried softly together. The last several months had been hard on the Duchenne community, with the recent passing of 2 fourteen year old boys. It was remarkable that my fourteen year old Josiah had maintained his emotions as long as he had. Today we mourned all our losses. I let Josiah know it was okay to be sad, and that I was, as well as many others, were hurting with him. Hating this disease with him. I wanted him to understand hurting did not make us weaker as humans and sometimes sharing our pain made us stronger. My son needed to know that he had every right to feel what he felt. That did not mean he did not trust in God, or believe in miracles. It did not mean he might not ever get stronger, or that he was giving up on hope. Because, hope would always be there for us when ever we wanted it. He was simply being human, feeling emotions that God allows us to have.

Tuesday, November 1, 2011

It was three o'clock and I decided to stand outside to wait in my new hot pink beehive wig. Just as I finished adjusting the three plastic black spiders, that cascaded down the sides, I saw the school bus coming. It did not take long for my Josiah to notice. He immediately lifted his head smiling.

I watched as the bus aid began to unbuckle the tie downs that kept his wheelchair in place. His smile widening as I blew him a kiss. Strapped behind Josiah was my middle son Cody. He was now beaming as he looked out the school bus window at me. It pleased me so much knowing my simple effort could make them so happy. I am sure somewhere else in the world would be a mortified teenager, if upon there ride home from school, stood a mother waiting dressed in biker clad and a hot pink wig. As for my two youngest they simply adored my silly side and encouraged it. Often asking me to do voice overs. My imitations of Marge Simpson could drive my oldest son Zach to leave the room, but my Josiah and Cody would engage in long conversations as I impersonated the blue haired cartoon character Marge.

I hustled the two of them inside the house to discuss the plan to prepare for trick or treating that evening. They were delighted to learn their oldest brother Zach would be joining us dressed as Santa. A few days prior Zach had generously volunteered to accompany us. I welcomed his help immensely. We loved Halloween and I felt determined to make it an enjoyable evening to share with my sons. I could remember past Halloweens when it was just me attempting to get them both up to the neighbors front doors to get treats. Even though both Josiah and Cody had electric wheel chairs to go from house to house Halloween night did not happen easily. We hardly ever encountered a house with out several stairs to the front door. Which had me leaving them alone down by the street or in driveways, waiting while I ran up to the homes explaining my waiting sons below. The homes with accessible side walks leading to their lit entrances did not allow any room for a wheelchair to turn around. Often my sons wheels would find dips in the grass and become stuck, sometimes requiring all my strength to pull them out. Now I beamed, I would have a companion and muscle with me and I did not have to ask for help. It also felt wonderful to not feel like I was burdening anyone. If you have never been at the mercy of the assistance from others you can not even begin to understand, how degrading and helpless it can feel at times.

With dinner done and my nephew George also now joining us we dressed to head out. I quickly found some items to turn him into a pirate, joining Cody's theme as captain Black Beard. I was rather surprised to learn on this chilly day that my 14 year old nephew George came to us from school with out a jacket. As a doting meddling mom I saw that I could take care of that too. However, I could not help but wonder as I assisted my two sons and nephew, how much I handled without giving it a second thought. I had fitted three dogs in costumes, turned Josiah and his chair into Noah and the ark. Dressed Cody and George into pirates along with turning the front of Cody's wheelchair into a pirate ship, and then laid out Zach's Santa suit. With five minutes to spare, I also managed to turn my self into a sort of Jack Sparrow look a like. With my pride in tack cause I was able to do it all, we were ready, dogs and all.

We walked the neighborhood in our little group. Zach and George running up to doors for Josiah and Cody. Me so thankful for the help. On several occasions those answering the doors would come down to where I waited with my boys, complimenting them on their costumes, and admiring the dressed dogs. I can not help to think though, it was my son Zach dressed as Santa who drew people out of there homes. As he captivated those who answered the doors, with out hesitation he directed their attention to his waiting brothers.

It was a good HALLOWEEN for all of us. After George was finally convinced it was time to go home I put my two younger sons to bed. I had some spare time to thank Zach for giving up his night to help me out. Zach and I talked a bit about some of the responses he received from people as he told them he was trick and treating for his bothers. A few people actually apologized because they didn't notice his brothers right away. Zach asked me how was I able to handle it all these years having to explain over and over the condition of his brothers, he told me it was exhausting mentally, and physically, just taking care of them for a few hours. I went to bed that night feeling good that I could still do all that I do and take on extra. After all someone less than half my age had just told me my life exhausted him, I had to laugh to myself, he did not even have to fit in the dating part.

It has been a arduous struggle for me to accept that am I loosing in my capability to lift my son Cody. Somewhere I will undoubtedly hear from someone telling me a ceiling lift is my answer or a hoyer lift. The lift we have, it helps in the home in two rooms, it does not help outside the home. What I am really talking about is much deeper. Whom I hope to reach is the mom or dad who understands this part of loosing yourself. Loosing the physical ability to care for your child. The pride that comes with knowing you can. The will to go that little extra, just to do it on your own. The never ending sacrifices you make because you love your child so much. The hours and hours, spent on finding ways to make it all work for your child. Also, having to live with the fear, that after all this you may just have to go it alone, and because of your love you hold for your child you are willing to accept all of it.

Wednesday, October 19, 2011

Laughter echoed from down the hallway. I paused folding the laundry momentarily to listen. It was MEA week and my two younger sons were off from school for the next few days. We had happily agreed to entertain my nine year old niece Kayla and her friend Megan during this time. Just the week before my boys had mentioned they missed playing with their cousin Kayla and wondered when we could have her stay over again. It is wonderful sometimes how things can just magically fall into place.

Kayla brought so much joy to my sons world when she was around. They adored her and she doted on them as if they were in her care. Never ceasing to assist them in any way she could, with so much love. I could hear cheering and giggling now which caused me to smile. Kayla as if like magic fit into our complicated world so easily.

When Josiah out grew his first electric chair last summer, I had decided to store it in the garage until I could find somewhere to donate it. While Kayla was over one day she asked if she could use it to ride around the yard with the boys. Josiah in his new chair immediately loved the idea that he could race with Kayla around the yard. After buckling her into the chair and giving her a few safety rules I watched as they began roaming the yard together. Smiles and laughter came from all three as they rounded trees and darted in between bushes. That was our Kayla, she always managed to find ways to fit into their world rather than leave them feeling awkward or uncomfortable about being different.

Today was no exception for her. She immediately began assisting me the moment she arrived. With her beautiful smile she took off down the hall pushing Josiah in his desk chair toward the computer room to help him start up the computer to play Mine Craft. She returned shortly, announcing that she would get Josiah a snack as soon as she helped Cody out of the Lego room, so he could play PS3. I marveled at her ability to accept them so lovingly. She absolutely understood their special needs and capabilities, rather than looking at them with unrealistic expectations. I looked up as Kayla came back to the dining room table, where I folded clothes. So matter of fact she told me Josiah probably should have a snack now. I had to bend down and scoop her up in my arms to hug her. Yes, she was right, we were on a mission to help Josiah gain back the weight he had lost form his surgery a few months prior, and she was eager to help. We were so lucky to have this wonderful angel in our lives. I told Kayla she did not have to wait on them, she could let me know if they need something. With her beautiful blue eyes she looked up at me smiling and told me she liked helping them, and ran off down the hall towards them.

Kayla spent the day with her friend running from room to room taking turns playing with my sons. Engaging and interacting with whatever it was that my boys wanted to do. It was wonderful listening to laughter and seeing my sons so happy. I shook my head thinking back to the day before, when I had wondered if I should have planned something special to do during their time off from school. Watching Kayla as she made herself accessible for my sons I realized I did. Having an angel to play with definitely was special. It is days like this that reminded me, Duchenne may always be present in our lives but, LOVE allows us to see so much much more.

Monday, October 17, 2011

passing

I clicked on to facebook this evening and the news hit me like a hard gust of wind. Taking my breath away for a moment and leaving me to feel absolute sorrow. Another beautiful DMD child was taken from of us today. Fourteen year old Dylan Smith lost in his battle with Duchenne complicated by Diabetes. I sat frozen, reading heart felt note after note from other mothers, who also were members of our Duchenne family circle, expressing their sympathy to Melanie, Dylan's mother. Fear gripped at me while I read. I paused to look up at the little voice that was now asking me what was wrong. In front of me sat my youngest son, Josiah. With his ipad in his lap he waited for my response. I realized my emotions must have slipped past my trembling lips enough to alert him. How much had I let slip out I was unsure of. What I did know was that I had to let him guide me to a sensitive approach to this most delicate subject matter, death.

My Josiah is fourteen, frail in size and still in the final phases of recovering from spinal fusion and experiencing unexplained occasional rapid heart rate. The closeness of Dylan's passing touched me so deeply at this moment. The age fourteen echoed in my head. My brother Richard died at 14 years old. He also had Duchenne complicated with Diabetes. Like Dylan Richard too slipped into a diabetic coma and passed away. The memories of last June spent at the hospital with Josiah began to resurface. I could feel the emotions of fear grasping at me. I was no stranger to death and life threatening situations and yet my own fear could beat me down like torrid rains on a field of wheat.

Looking into the brown eyes of my son I fought to hide the fear that was beginning to grow with in me. Duchenne was frightening enough on a daily basis. For a child to learn of another child's passing intensified the fear that death was never to far away. Josiah had heard enough to feel concern and was now asking me what happened to this boy named Dylan who was also 14 years. It is moments like these when I want to feel Gods hand squeeze mine while he whispers in my ear what to say. It is also the same moments I know, that will cause some one to say wittingly to me- well, yes it was God by your side all along giving you courage and knowledge. But its at these very precise moments when I want a little credit. Credit for not running away and facing all the challenges Duchenne brings into our lives. Praise like Dylan's single mom deserves, for staying by her sons side. For putting her own life second to her sons. Credit because we chose to keep hope alive and the faith that all this suffering will not be in vane. Believing that yes God does in fact have a plan beyond anything we can comprehend but given all the challenges ahead we are still willing to face each day at our sons sides with courage and the utmost unconditional love. But most importantly, honor to our most courageous sons who battle this devastating disease with courage and dignity.

I did not hear any words whispered to me tonight and fumbled through my thoughts alone. There will probably be someone out there who will undoubtedly let me know perhaps I was not listening hard enough or not paying attention. However for the record Josiah and I survived another sensitive moment together. I padded the truth some for his delicate cognitive capabilities and reassured him God loves him dearly. While I keep Melanie in my thoughts and prayers I will hold her loss close to my heart through the night, as I sort through my own fears of loosing my sons to Duchenne.


Final thought- knowing there others out there who can understand the pain Duchenne brings to this world has helped me get through some tough times especially when I felt very alone. It is vital to our sons that we can keep this Duchenne awareness going. Reaching out to each other is so powerful.

R.I.P. Dylan you are now a hero with wings.

Love to all my DMD family members.

Sunday, October 16, 2011

My son Zach let know immediately upon the return from my "moms week away" how happy he was to have me back at home, and resume my role as mother. He had graciously accepted the responsibility of caring for his two disabled younger brothers, while I spent a week in Vegas with my two sisters, relaxing and enjoying some much needed time off. As he wrapped his arms around me to welcome me home, he whispered that everything had went wonderful, but I was very missed, by him especially.

Zach spent a few minutes briefing me on the weeks highlights. Assuring me that his brothers were happy, rested and doing very well. It did not take long for me to know that Joanne our sweet neighbor who had committed to come by in the mornings to help him get the boys off to school was absolutely wonderful. I had most definitely made an excellent choice in asking her to help out. Josiah and Cody let me know they enjoyed her company as well. It thrilled me as I listened to them tell me about their time together. Almost bringing tears to my eyes when I learned that each morning she sang to them as she helped them ready for school.

I was even more surprised the next day when Joanne stopped over with two very heart felt thank you notes, for me and my sons. Her first note thanked me for allowing her the opportunity to get to know my boys and entrusting them to her care. She continued to thank me for the wonderful experience and that she feels so blessed to have been able help. Her note to my sons thanked them for accepting her help and allowing her in to their special world. I read her notes several times that day, each time it gave me such a warm feeling.

I spent sometime this weekend thinking about relationships. What it means, the bonds that pull us together and the situations that break us apart. Wondering why there are some people we are so drawn too, and what is it that makes us attract others. In the world of special needs this has always been a very complex and sensitive matter for me. While trying to keep my thoughts mostly to myself, I often have had to bury my emotions behind my smile. Joannes note assured me that I had made a wonderful choice. Even with my own relatives it can be difficult to ensure my boys feel accepted and wanted at times. Thinking back to the nine days I spent with my youngest son Josiah in the hospital as he recovered from spinal fusion surgery, it has become very clear to me how imposing their disease makes others feel at times. Also how left out it often makes my sons feel.

Every now and then something wonderful will happen and it is then that we are reminded what love can do. While all relationships are just not made to last forever, there are those that can grow from one simple act of kindness. As we push forward and accept the changes and challenges Duchenne has placed in our lives it still remains a constant struggle for me to keep my sons connected to the outside world. The world where unfortunately compassion may not always be present. Also the life beyond our accessible home Does not always have room for two wheelchairs. My journey with Duchenne has helped me find the courage to be open and honest with myself. Most importantly though it also has pushed me to continue to find ways that enrich our lives.

My home coming from my week in Vegas could not have been more splendor. Joannes note showed me that by reaching out I had invited more love into our world. I could not be more thankful. If angels do walk amongst us I trust that perhaps my sons needs have helped me to reach out to a few of them.

Saturday, September 3, 2011

I will hold you when you are down. I won't leave you alone to face the sorrow. You have all of me. When you are cold I will be there to keep you warm. I will show you the way when you are lost. I will bring you home. If you want to cry I will dry your eyes. I will never leave you. Together we will fight. We will find strength in each other. When your muscles fail I will carry you. If your hope fades I will hold your hand and help you to find faith again. We will never give up because we have so much to give. Through shaking hands and tears of fear we will we see the sun come out again.

When I need to hear" I can" I will look to you for courage. When I am down I will let you bring me up. I will not be able to always hide my fear but, I will be strong enough to let you know I am not afraid to face my fear. I will never walk away from us. When the days seem short and the nights to long I will look at you to find the energy to get through.

By your side I will walk, in your shadow I will shine. You will be my guide on this journey. When the path becomes to rough I will lay down to help you cross. I will let you be the light that takes us from here to greater places. You are so much more than you will ever know. You are my reason to breathe, the reason I am here. There is so much more than what we see. Together we will reach out. Through you- my Josiah and Cody I will touch the world with my words. I will let your spirit soar with hope and inspiration.

Friday, September 2, 2011

I put on my green water waders pulling them over my knees, tightening the straps around my slender thighs. Stepping off the dock into the lake, instantly I could feel the coolness of the water through the rubber, as it encircled my boots. I scanned the shore line, following its path as far as I could see. The worn earth from the summers flooding made the banks appear almost jagged in spots. It was clear there was so much needed work ahead. Mechanically I began moving rocks back to the shores bank. This I knew I was good at, making things look good even if they are not. Storms had raged through the area over the summer, but we had managed to stay safe. I looked over at the brown grass that remained from the lakes cresting into my yard. Yes, indeed we were lucky and spared. But why now as I worked to clean natures mess did I feel emotions flooding me. Inside I felt overwhelmed. It was another Labor Day weekend, that time of year again that leaves me feeling helpless and emotionally alone. Damn, why did I let it control me so deeply? It seemed no matter how hard I tried to stop it, labor Day hit me like a hurricane. As if I have no control, I can feel it rip me in half. Leaving me broken and reminding me of what I have lost and what is to come.

I wanted desperately to feel anything but this explosion of pain that was grasping at me now. I worked harder at picking up rocks and moving them closer to the shore. Hoping that if nothing else exhaustion would rescue me. Stopping briefly I straightened my back, I was beginning to feel some strain. However, I was not having any relief from my Labor Day anxiety attack. I began to feel the sting of anger, this was my free weekend, my weekend off. My weekend to reward myself and rest from the daily lifting I do caring for my sons. What was this I was doing? I am not sure how long I stood there in my waders but, somewhere from deep inside me the answer touched me. Like a breeze blowing through me I felt myself absorbed in the reason why. As much as I have grown to hate DMD it is my world and with out it I have nothing. It is my reason why I fight so hard to see my sons succeed. Its the reason why I push my weary worn body to the limit. It has become my passion and in the most covert ways it controls me. It is also the reason I fight so diligently for something somewhere along this journey to be my escape. A place to let me step away from my fears for mere seconds.

Exhaustion was not going to rescue me I knew tonight. I would have to face my Labor Day woes and find someway to get through them. I will allow myself to feel whatever it is I need to feel, but this time I will look it straight on "with dignity and pride"-words from a FB friend with DMD. Only this year I will accept this is just another part of my world, knowing this too will pass.



Monday, August 8, 2011

Forgive me

I just think you should know I am not as strong as they say. I do not want to disappoint you. Inside I am a beautiful mess. Tangled masses of love left behind from a world lost. I do not want to let you down, but the me you see cries out in her sleep. I am enslaved to the fear that has taken control. Fighting to understand why I feel so captive to my emotions. Clinging to fading hope that nothing is in vain. I stand here now attempting to hide all that is me -behind my smile. I ask no sympathy for that, just that someday, I can be the strength that this world demands of me. I apologize as I struggle to rise from my fall. Excuse me while dry my tears.

All that I have to give now is the understanding of what once was. Does it mean anything at all, the roads I have traveled, the places I have been. Do the people I have known, the events that haunt my soul hold a story. If you strip away my past will it mean anything at all. Will it mean anything that I have been here. Will every step I have taken in faith betray me. Can you know who I am if I am only a journey reaching out to what I left behind.

My steps stray away from the places I have been and the pain I have known. I follow along hoping to find the path that will lead me to where I need to go. Behind me I leave a trail of a life that was once me. Sweet and sad memories that carry me to where I am today. Do not ask of me why the tears still fall. Embrace my smile hear my laughter. Someday If you want to see me take the road less traveled. Open your eyes look for me, where the valley lies low, wandering in a meadow of wild flowers. Among the trees standing tall, I can be heard as the breeze calls out my name. Over the mountain tops I soar through the clouds.

If there is more out there, will it find me. Perhaps I have found it. Can it be that my past has lead me to where I need to be. The strength I thought I lost, never really left me. Maybe all these events were meant to help me to believe in myself. Can it be that destiny is calling to me to be more. Perhaps life is giving me the chance to see I am all I was meant to be.

Sunday, July 31, 2011

fly with your dream



There are times when words are not needed because love can touch us in places where mere words can not travel. Then there are also times when honor and praise bring forth a deepening connection and love towards each other.

For my first born," we will cross many roads in our lives that may break us or help us to grow stronger. My love you have certainly showed your strength, as I have. It pleases me beyond words to know that this I have passed on to you. Together we have shared heartache and devastation, only to pick up the pieces and continue forth. Together we have found the true meaning of unconditional love."

It is with great pleasure I embark on the next phase of my journey with my eldest son Zach. In the twenty one years that I have had the honor to watch him grow from boy to man, I have been blessed to see our relationship also flourish. It is with a deep respect, understanding and love that I embrace this young adult before me now. I no longer see before me a child with dreams but an accomplished young man who has openly praised me for helping him to seek out his adventure and supporting his dreams. As he continues to conquer his quest I watch with great admiration. With dignity and pride he has accepted the challenges that have been presented to him. Through sheer determination I have seen him rise from a young boy of a single parent home to become founder and CEO of his own gaming review company "Media Cows". Because of his commitment to succeed and the love he holds in his heart for his terminally ill brothers I have no doubt he will hold tightly the family values that have been bestowed upon him while his business flourishes. So it is with great pride, love and admiration I introduce my beautiful son Zach to the world. " My first born, sore, let your wings carry you far, allow your heart to guide you when you feel doubt and your mind to help you seek all that the universe can offer.
"Zach who have dared to stand out alone, you have defied the odds and you took a chance. As you open your arms to the world, it is my hope you will contniue to be an example of compassion and strength. Always stay true to yourself and do not let the doubt of others control your desires. You have witnessed what selfishness can do and you have seen what can be accomplished with love. You are on your way-to greatness

Saturday, July 30, 2011

the tooth brush

Glancing at the clock on the wall I noticed it was already a little past 11:30pm. Where did the time go, I thought to myself. I still had a sink full of dirty dishes to wash. The boys had not been given their evening dose of meds yet and laundry laid piled in a heap at one end of the sofa. I knew the dishes and laundry could wait but Cody and Josiah really needed to be off to bed now and getting them to bed by myself was certainly a 45 minute job at least.

I could hear both Cody and Josiah busily chatting while they worked in their Lego room. Entering the room I immediately noticed the new structure that had kept them both occupied the last several hours. It covered half the table. A complex with several rooms and a second floor with stairs. At the top was a light rail running across the span of the building along one side. I am not at all certain how my boys are managing to reach up to such heights. It is just with in the last several weeks I have noticed these few minor feats they have managed. Unfortunately it seems I am seconds behind when they are actually pushing the limits of strength and miss marveling at the extremes. Josiah anxiously pointed out the boarding deck he had built for the passengers to enter and exit. I was overwhelmed with utter amazement at the the detail they had put into this newest design. Feeling compelled to hurry them off to bed I had promised to spend time the next day letting them show me all the amenities the new complex offered.

I heard my eldest Zach come in the front door as I pushed My Josiah in his desk chair toward the bathroom doorway, his timing was perfect. With Zach's help I could get the boys in bed much faster and spare my back from the extra lifting. Zach came to our aid and immediately began to assist Cody with getting ready for bed. I gave a Zach a few instructions on what I needed him to do for Cody. As Zach lifted Cody back onto the desk chair and steered him toward the sink I watched momentarily. Zach laid Codys tooth brush prepped with tooth paste on the counter next to the sink where Cody had been washing his hands. Not exactly what I asked of him. This I surely thought would be requiring my intervening. To my pure surprise Cody reached over and picked up the Tooth brush and began brushing his teeth himself. I stood feeling over joyed. This had not been a task Cody had done in quite a while by himself. Zach stood back smiling at me then at his brother. They both knew what this meant to me and Zach also knew what this meant to Cody. Cody smiled up at me, telling me he was getting the back teeth too. I watched as his beautiful arm and hand worked together cleaning his dazzling smile. It did not matter to me he how this was happening- only that he was doing now. Such a simple task so many of us would not give a second thought about. My beautiful eighteen year old Cody was moving his arm in away I had not seen in so long. He brushed , he swished, he rinsed. Then smiled the proudest smile telling me "I did it mom, you don't have to do everything". A tear rolled down my cheek as I smiled back. One score for us I thought, Duchenne take that.

I do not know if it is in fact Ataluren (PTC) the experimental drug at work or Cody with some kind of adrenaline flow. I know He did not attempt to use his arms the day before. I know we have days when both boys seem to struggle with lifting a fork to their mouths. What ever is happening I pray it will continue. At the very least I will cling to this new hope. The hope that quite possibly we are stalling Duchennes progression.

Saturday, July 2, 2011

the night call

I arose from a deep sleep upon hearing my little Josiah softly ask me to come check his heart. I quickly pressed the return call button on the monitor to let him know I was on my way. Without hesitation I was up rushing to his room. Josiah immediately whispered he had dreamt his heart had stopped. Looking into his deep brown beautiful scared eyes I placed my hand gently on is chest. He appeared fine and the beats that I felt seemed some what quickened but not alarming. He asked if he could press the record button on his heart monitor to get a recording, in case his heart was acting up again. I smiled at him telling him yes that was a good idea and that maybe we should send the reading out. Some what relieved he had no symptoms of discomfort and given the fact he had awoken from what most likely was a disturbing dream, I felt myself lesson in concern. But still very heart broken that fear invaded my sons life in so many ways.

Life watch responded fast. Josiah's reading was not out of normal range but did show some increase in pattern. To put both Josiah and myself at ease I decided I would sleep on the recliner next to his bed. I laid a wake for the next several hours listening to his breathing and wondering how frightening this all must be for him. How frightened I felt. Hating how helpless it left me. Also wishing Josiah did not have to live with this added fear on top of living with Duchenne. The roller coaster ride was on again. Only now I had no idea if we were going up or down.

He did not awake anymore that night and in the morning Josiah did not make any comments about his dream. I was tired and still very upset that this new symptom had entered his world. Still though, very pleased and thankful the night before did not turn out to be an emergency episode. I watched as he played with his legos later that morning. Smiling and busying himself with building the cars 2 kit I had recently purchased for him. He seemed no different.

Today sadly though I felt control slipping from us, from me. In spite of every ounce of strength I put forth, Duchenne was gaining. We were losing and it teared me inside to admit. A friend once told me after her son graduated from high school at the age of 18 she felt sadness overwhelm her. While for most young people it was a time for a new adventure, for a child with Duchenne it had a different meaning.

I walked into the room where my Cody was playing a video game. In a little more than a month my Cody would turn 18. Having grown up with Duchenne I felt and understood what my friend meant. A child with Duchenne rarely made it pass the early 2OS. Today I was facing that same fear. The same fear my parents also had too. Unlike my friend though I would see Duchenne take both my younger sons. A reality I could not ignore today. Perhaps it was the new heart monitor making it all seem so much closer. What I did know was unlike my friend we now had cardiac issues attach itself to our already complicated lives.

From another part of the house I could hear Josiah sweetly calling me. Reminding me it was time to send another cardiac reading in. As if by some magic it was the tech on the other end of Life Watch that gave me my hope again. The readings were found to all be in normal range, very good for Josiah, and music to my ears. As if sensing my concern she reassured me every reading so far has been in normal range. I could not help but embrace my sons after hanging up the phone. At least for today I could help Josiah let go of his fear. I could reassure him his heart was beating strong. And possibly for just today the roller coaster ride was at a halt.

its anything but

All I can say is, I put on my bikini and its complicated. Why you ask- it fits perfect, but I am the fading old. I like my bikini but I am not sure it likes me back. LOL. I want to take it out and show it the world but I am not sure my friends approve.

Over due with my writing and with a very serious attempt at exploring the finishing touches of my book, I once again find myself lost in the midst of events surrounding me.

New relationships have been bubbling up all around. I am so excited for some of my friends and family at finding someone to engage in heart felt feelings with. I have been priviledged with romantic news and announcements. My insight to the romantic happenings surrounding me leave me so much more aware, that, yes perhaps, Love is in the air for some. However drama is even more heightened for others. I've become more and more aware of the people declaring they are in a relationship and "its complicated". This lines popularity has flourished since the Movie "Its complicated". A romantic comedy starring Meryl Streep and Alec Baldwin, who after having been divorced for 8 years flirt with a short lived affair between them. The ending thankfully puts Meryl Streeps love interest toward pursuing a HEALTHY relationship with Steve Martin.

I cannot help but wonder though, the meaning behind all the postings I see lately of, in a relationship and "Its complicated". Are this many people sleeping with their exes but secretly wanting another? Really, did I miss something in my long dating life where it becomes difficult to say to someone I like you and want to see just you. Somehow after our grade school days of passing love notes around- some of us have graduated from "Do you like me" check here yes or no to the popular "ITS COMPLICATED". I find it even more perplexing to see that some relationships existing are over ten years and still complicated.

What is this new relationship status? When did our feelings for someone become so widely complicated? Hoping and waiting for him or her to change is ridiculous. You need to open your eyes. If you are keeping those special feelings a secret it can not be all that good. Those of us in Love want to shout it from roof top not hide it in a locked room. Check the box already and move on. Girlfriends and boyfriends those break ups and arguments are telling you something. It is not good. Lets be honest if it is bringing out the "complicated" announcement, that might be a red flag, if you are hoping for more.

As for me I plan to work out this bikini relationship soon. Neither one of us enjoying the "Its complicated" status and need to commit to each other or move on. Tankini is on stand by.

Tuesday, April 12, 2011

The sun was just beginning to make its appearance. Shades of pink, yellow and orange hovered above the horizon as I looked out over the lake. The morning sky was beautiful and life on the lake was beginning to awake. A family of ducks swirled across the rippling water. I was distracted from the beauty as I heard a small voice call out to me.

It had been two weeks since Josiah's spinal surgery. He was now home in my care recovering. I was just beginning to feel comfortable moving him around and the night before I had actually manged to move him myself for the first time.

Surgery had went well, though Josiah had lost quite a bit of blood. His incision seemed to be healing good and he was asking for pain meds less often. Turning him every few hours was still very important and like a clock he seemed to wake up letting me know it was time. Sleeping next to his bed on a recliner had become my new resting place, making it easier for me to be there for him.

I rolled Josiah over slowly to his side. Swiftly I worked positioning pillows to aide in keeping his body as straight as possible. Tucking him in again I bent in to give him a light kiss on his forehead. Josiah was already drifting back to sleep by the time I curled back into the recliner.

I was so happy to have the surgery behind us. The care that was needed now to meet his needs left me most days drained. But we were managing. With the help of my sister Marie, my brother in-law Bill and my eldest son Zach, we had a system in play that worked.

It seemed I hardly had enough time to shut my eyes and my Josiah was calling for me again.

Thursday, March 24, 2011

Overwhelmed with emotions, I search frantically for some way to resist the surrender to the panic and fear I feel growing with in me. Apprehension, provoked by my Josiahs' upcoming spinal surgery. The ominous anger that consumed me years ago when my two younger sons were first diagnosed with DMD once again enervate my strength. Duchenne, again, paralyzing me in my fear.


The months and weeks of awaiting Josiahs' surgery date has now turned into days. As we approach his surgery date I feel my existence tested more than ever. For the first time in seven years I feel the travail of this life threatening disease and my abilities of single parenting. Having never questioned my capabilities to care for my two sons with DMD alone before, I am lost to this new sense of insecurity.

In my heart I am paralyzed with daunting fear I may some way fail in my attempts to be all he needs. In my mind my I know I have no choice but to be the strength he will rely on.

Saturday, February 12, 2011

Path ways

I looked out the window today at the heart shaped path a friend had plowed for me the weekend before. The lake descending from my back yard now frozen was bare, except for my heart. I followed the long path from my knee deep snowed covered yard, leading to the shoreline. Then continued, stretching out to the corridor of plowed snow, several yards onto the lake. Alone in my thoughts I let my mind take me back in time. Back to the days when I myself shoveled paths throughout our back yard, before we moved to this lake. Days when shoveling was all that was required of me to allow my two youngest sons the capability to wander through the snow covered yard.

Recalling the laughter and fun we shared together, I smiled to myself. Cody and Josiah would follow each other through the winding maze I created. Cautiously raising each foot at every step. Along the twisting isles they would stop and giggle at the snow creatures I sculpted for their delight. Then somewhere in the pathway they would find me collapsed. Laying, in the snow resting, from all the shoveling. Watching and waiting for them, filled with great joy that I was able to create for them a winter wonderland. Overwhelmed with hope that somehow walking would not be lost. Together, laughing we would tumble in the snow until our fingers and toes would begin to feel the slight sting from the cold.

Looking out today where my friend had plowed, I realized getting my sons out on to the lake would be a task that I could not manage on my own. A mission, even if possible, that would most certainly require the enlisting of more help than just my sister Marie who has become my right hand lately. Scanning the lake and then back to the heart shaped trail, I wondered if my sons ever thought about those memories. The days when they were able to walk in the snow. The winters when going out doors merely required some assistance with dressing and help with maneuvering the stairs. The days when lifting was hardly a concern, a time when when the pathway seemed easier and more accessible. Moments when being a single parent did not seem to challenge my own physical strength so much.

I knew Cody and Josiah remembered walking. It still was not all that long ago. We had just reminisced the day before, recalling memories of walking in the old house. we talked about the phase 2 PTC drug trial and the 6 minute walk test Josiah had no problem completing. A Beautiful visual of them out in the snow flashed before me. I envisioned the two of them walking as they had in the past following a groomed winter trail, smiling and walking.

Winter had now become somewhat trying on us and often required more assistance than what I was able to provide alone, but we were managing. Only two weeks before we participated in our community out door Winter Fest. Trudging through snow with electric wheelchairs, bundled to soften the effects of a typical wind chill for Minnesota we went dog sledding and enjoyed a sleigh ride. With the help of family we were hardy Minnesotans enjoying winter.

I stared at my carved heart. Its symbolic meaning calling to me. Today might not be the day I get my sons out on the lake to play in the snow. This most likely was not going to be the day I would see some actual difference that PTC was making in my sons lives. All the energy that caring for them demanded of me did not change. We would still have to prepare ourselves and face our fears of Josias' upcoming spinal fusion surgery. But, I was ready to give DMD another fight.I was ready to accept the new challenges that lay ahead. Most importantly, we had been given back an extra glimmer of hope. We were back on PTC. It looked promising. Cody and Josiah were tolerating the medication very well. We would embark on this next phase of our journey with DMD, hoping to be following the pathway to help cure Duchenne.

Lego athletes

Today I decided to stop wondering what it might be like to see Cody shoot a basket during a basket ball game. Or see Josiah hit a baseball and run like the wind to get on base. In stead I took a deep breath and sat down be side my sons as they put together a new Lego kit. I leaned in between them fitting myself in the tiny space between their wheeled chairs. Happily they made efforts to pull themselves a few inches over to allow me space enough to be apart of their fun. Cody eagerly showed me the progress he had made on the building he had created. Josiah quietly worked on the new kit the tooth fairy had left him the night before. I looked around the beautiful Lego room I had created for them. Buildings and vehicles that they had put together lined the shelves. This was the world my sons knew. This was one of their past times they had grown to love.

Marveling at the patience it took to work their weakening hands and arms I leaned over to give them both a little kiss on the head. I watched Josiah look at the directions and search for the correct piece. Cody chatted on about how fast Josiah worked and how proud he was for him. Together we sat, away from the outside world lost in Lego land. My sons were happy, they accepted this was what they could do. I wanted to be at peace with that acceptance. I wanted to embrace all the enjoyment they felt building with Legos. I felt happy that I could give them a place to be creative, a place that they could shine and display there skills. I was so very proud of the abilities they possessed with such little strength. It pained me though knowing that this could and most likely would someday become an impossible task for them. Our friends and relatives pushed and cheered to help their children become athletes and dancers. The world I knew loved stronger and faster. The world we lived in did not know the magnitude of strength it took for Josiah or Cody to build a small structure. Or the concentration it took for either of them to follow instructions. My two younger sons would never have the athletic abilities my friends shared about their own children. They would struggle more each day to use their dying muscles. Inside I was horrified at what was inevitably to come. I knew thinking past today would however take the joy we held on to at this moment away. So Legos was our now. I picked up some blocks asking Cody if I could help make his wall on his house stronger. He smiled at me saying "mom you are good at finding ways to make something be stronger." Hugging him I said "sometimes being strong is all I know".

Friday, February 11, 2011

impact

On any given day someone somewhere is going that extra step to make a difference. Being on the side that so desperately reaches out for the compassion of others, I can not say thank you enough for the generosity of those who give of themselves. Several months ago I spent the day with my two sons afflicted with Duchenne Muscular Dystrophy, along with my sister Marie, helping out at a Lock-up for MDA. Our job was to greet and tell our story to the representatives who came to make donations for MDA. Volunteering for this cause has become a big part of our world and speaking on its behalf is very near and dear to our hearts. While it is not always very easy for my sons Josiah and Cody to attend some events they willingly accompany me on request.

This day at the lock-up was a special time for us to share our story because we are involved personally in research. For the first time in a long time I felt I could talk about Duchenne with hope. My boys sat in their chairs next to me, quiet and feeling quite shy while I spoke about The PTC study my sons were enrolled in. PTC laboratories had enlisted several young boys to part take in a on going study using the drug "Ataluren". Research reports were indicating that Ataluren was showing signs of slowing the progression of Duchenne and in several cases some strength was being maintained. My sons both showed some healthy muscle tissue to be present, which told us something was deffinately happening with in their bodies. We had hope given back to us and that alone gave me the courage and energy to let anyone who cared to listen, learn that research was vital to my sons lives.

Both my sons being extremely shy stayed close to my side remaining very quiet. On occassion responding verbally to hellos or compliments but mostly smiling and nodding through out the day. Cody seemed to be relieved when I finally had no one left new to speak to and announced we could go. We graciously thanked all those who came out to help cure Duchenne. It was not until we headed home that I realized the real impact my openess to speak had. The two people who had the most to gain from hearing me talk were my sons. As I loaded my boys in our van, Cody simply said thank you mom. Surprised I asked why. He told me for not letting him give up on hope.

That night I sat in my room alone thinking about research, the study, my fears of allowing my sons - for the most part to be part of an experiment for this new drug. I thought about my desperation and anger I feel daily from watching my sons muscles waste away. I also thought about hope. I knew we had come a long way in research. Science understood so much more about this disease. But yet a cure for Duchenne still does not exist. However, I was happy my son had hope.

It is now several months later. Much has passed since that day. Josiah has undergone major spinal surgery and has had to relearn to hold his head up and sit unsupported. We continue to move forward even though at times there have been some set backs. I look at my sons and know deep with them is a drive and determination to fight. I believe that we are getting closer to cure and will not give up on my sons. But for the most part I still remain a skeptic to some degree and a hard judge to pass regarding this new drug. I cling to the hope that it is helping. When those low moments happen and we struggle to make sense of why, I turn to my boys. Watching them continue to hold on to their hope lets me know I am doing all the right things.


Thursday, January 13, 2011

Josiah bent over to pick up a Lego piece that had slipped from his fingers to the floor. I watched silently as his shoulders slumped forward in an awkward tilt. It was becoming increasingly harder for him lately to force himself upright again. He managed and I felt some relief. He was still finding away to continue this ability. It was however, more apparent, the rapid loss of strength he was experiencing. I could feel some anger once again growing with in me as I silently watched him struggle.

I can not remember a time when the words Duchenne Muscular Dystrophy was not in my life. My entire life, consumed of years spent waiting for a treatment, at the very least that would help control the rate of muscle loss. Now I was faced with scheduling surgery for my youngest son Josiah, because scoliosis was aiding Duchenne in this on going losing battle of muscle loss. Spinal Fusion was a new term recently added into our complicated devastating world. My research of the arduous procedure only served to give me more concern, climaxing my fears. But, without surgery fatality looms even more.

Quietly I slipped out of Josiahs' view. It was even more crucial now that I pulled forward strength and hope. Desperately I worked to refocus my emotions on something more positive. But today Hope was not standing in front of me. Reality her very honest cousin echoed in my ears. Her harshness repeating the unrelenting fears I had grown to know so well. Surgery was vital for my beautiful sons life. That same procedure did not come without very real risks, and pain. It was up to me again to find a way to be the strength we would both need to face another battle with Duchenne. Battling seemed to be the some of my existence lately. I felt sad that I had nothing more to offer than my shaken emotions. I felt hurt consume the very depths of my being. I wanted hope. Most of all though, I longed to be comforted to have something, someone, hold me for once.


Lost in my thoughts, I jotted down a few sentences, hoping that would help me release a little of the uneasiness I was feeling. Rereading my words I paused momentarily recalling some of the responses I had received from a few blogs I had posted about my feelings previously. On occasion it seemed that the message I had hope to convey was lost to some. I was offered advice on health care, given suggestions on home improvement and my favorite, hints that I some how was in fact not addressing other issues that pertained to my own physical abilities. For the first time in a long time I felt totally distant from the world. I could not recall writing any blog that resembled even remotely that I was asking for advice or for that matter complaining. Why was it, I wondered, impossible for some to just share my passion? Reality echoed even more, was what I searched for even available to me? Perhaps not in the way I had hoped or expected, but yes, those that could share in my intensity far out weighed the negative. Together with the inspiration I wanted to be for others and the encouragement I received I knew that I had connected in some way to other people.

Today though I felt fear overwhelm me, captivate me into my sea of emotions. I looked for hope to help me feel not so isolated but she stood blankly looking back at me. In order for me to have her I would have to escape from the despair that slowly was beginning to surround me. I knew reality was here for me today.
She was not asking anything from me, or demand that I put aside my pain. She showed me the truth, not a world of fairy tales. I realized, again, the pain and fear I felt would pass. I would face whatever challenges that lay ahead with dignity and pride. I would most certainly not let my sons down. I would as always be a constant source of strength for them and that was something I would never let Duchenne take from us.

Reality, helped me to see what I am capable of, but hope helped me find the courage to run with it.
Sometimes it can be tough to find your back when your world has collapsed, or been ripped apart. It can be almost impossible for some of us to even pick ourselves up when we have crashed. We can become so consumed by pain that we lose ourselves completely.

Last night I thought about what makes one person quit and another one only strive harder. "God never gives us more than we can handle". We have all heard that somewhere before. Why I wonder than is there; suicide, depression, alcoholics, drug addicts. We as humans can develop a host of ailments just from stress. Hospitals have special wards just to deal with mental illness. Are we handling it, if we completely withdraw? Are we handling it, if we need a substance to help control our emotions and feelings? What makes one person emotionally stronger than the next? What is it that can separate us so differently?

It also leaves me wondering why it appears to be so easy for some of us to abandon our families in pursuit of selfish desires. Examining my own life it perplexes me that in some ways many of us will excuse one parents failure to put his childs needs first. We even will go so far as to help make excuses for in ability to cope with stress. Call it what you want but, I find myself absolutely unable to listen to any more excuses.