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Wednesday, December 1, 2010

Share my beautiful dog followed me with her black round eyes as I moved around my room, clearing a space close to my bed for her to rest. She laid her head down on the side of her cushioned flowered bed as I approached her. It had been a very rough day for both of us and it did not seem to be improving. I wanted to hang onto the words the vet had said earlier that day. Keep her comfortable and try to get her drink, she would be fine tonight. He wanted to see her immediately in the morning to do more test. We both felt it was better for her to spend the night at home, where she could rest more comfortably. Cradling her small head in my hand gently I put an eye dropper of water to her mouth. Opening slightly she licked at it. I clung to the small hope that If I could just try to keep liquids in her it would improve her condition. She no longer seemed to have any energy to move as I covered her with the towel I had laid beside her earlier. Tears fell from my eyes as she laid there so still looking up at me. Deep inside me, I knew my beloved pet was in fact dying before me, and there was nothing more I could do for her, except keep her comfortable. Petting her gently and laying her head back down to rest, I let the tears fall and I said my goodbyes.

I was hesitant at first to reach for Share when I saw that she still laid in the same spot I had put her in the night before. I placed my hand gently on her hoping desperately to be wrong, I could feel deaths coldness immediately.

Sometime during the early morning hours my Share had passed away. I was silent with grief. How would I tell the boys. Memories of Share with the boys flooded me. Seven years was hardly enough time to have her in our lives. This just all seemed to be so unreal. I Stared at the pink coat she was wearing, that I placed on her the day before to help keep her warm.

Death had been an issue the boys had been questioning lately. It was a subject I wanted to deter them from. The death of a peer, a month earlier who had suffered from Duchenne, left my sons a bit concerned. Delicately I searched for ways to assure them all things had to die but it was God who decided when, and now was not their time. It seemed we had worked through some anxiousness and the boys at least appeared to at ease.

Share's lifeless body laid before me. What would this do to their already shaken spirits? I was lucky to have my sister Marie at my side this morning. Our eyes meeting as we knelt down next to my beloved pet. No words were needed, our tearful glances to each other let me know she felt my sorrow. I told the boys after school that day. In my arms I held them closely, my sister embracing us all.

Josiah asked through his tears would he die like Share. My heart broke. In my arms I clutched my son tightly against me. I hated Duchenne. We would get through this loss together. Our pain from losing Share would lessen each day. But the fear that DMD brought into my sons world only hovered more. Casting my own fears a side I struggled to find ways to help them see past theirs

Josiah and Cody very casually mention death on occasion, like all things Duchenne has brought into our world we have had to accept and adapt. We will live with the fear of knowing the course this disease will take. We will also hang onto hope.

Wednesday, October 13, 2010


I listened as a friend told me about how much he was enjoying the football season and his son playing. He shared with me the joy he felt watching his son play quarterback. Giving me highlights of the most recent football game, proudly he spoke of how well his son played his position. The force, skill and strength his son was developing left him with immense joy. I listened happy for him, as he talked to me about fitting the boys in their equipment and the excitement all the boys had as they practiced for their games.

Hours later driving home I could not help but think about my friend suiting his son up for football. I could not help but think about the differences in our lives. While he watched his son run, I pushed both my sons in wheel chairs. While he helped choose the right size equipment his son would need for this season, I refitted my sons in AFOs and had their wheelchairs resized. While he tossed a football back and forth to his strong son, I picked up legos off the floor that slipped from my sons weakening grasp. As parents I was feeling we had so little in common in the care of our children. I listened to him beaming about how strong and fast his son was for his size, wanting to feel joy for him. However, inside I was hiding my fear that my sons were beginning to become to hard for me to lift and carry. While he went to practice with his son, I took turns strapping my sons to a machine that would help them stand. He watched from the side lines with immense joy that his son was developing muscles. I watched in horror daily as my sons showed signs of more weakened muscles.

As parents we shared the same kind of love and admiration for our sons. Yet, in reality our parenting was so unalike. While he helped plan strategy with his son for a game, I would be encouraging mine to try to use their almost useless limbs just to feed themselves. while he helped to condition his son for another season of playing ball, I would work hard stretching the limbs of my Josiah and Cody, in hope to preserve strength. I cried alone in my thoughts driving home that evening. I had sometime ago accepted all the challenges that lay ahead for my sons. But this pain was new to me. The feelings that were bursting from me now were different. I was happy for my friend and his son for what they shared. Yet inside, I was being reminded of the pain and loss my sons and I faced each day. I was happy my friend wanted to share with me how proud he was. I fought to control the tears that fell freely down my cheeks. Wishing I was able to find a comfortable way to happily share the fact that my Josiah took five steps today while in the support of my arms. Find words to describe the magnitude of strength I felt managing to assist Cody in the bathroom by myself. Annoyed at myself that I was once again letting this devastating disease hold me captive to my unrelenting fear I pulled my car over and sat silently. I wanted to see my sons have their moment of triumph at the level my friends son had.

After sitting for sometime alone with my thoughts, slowly I started my car again. I knew I could and would learn to accept this too. In time I knew this reality of loss would lessen. I would find courage to share in the joy that my friends shared with me about their own children. I would somehow find away to overcome the constant reminders of the challenges we face daily. But for now, I would allow myself the need to be comforted from the grief that had attached to me. Tomorrow I would continue to sing praise for each attempt my beautiful sons made at using their weakened muscles. I would embrace the fact that I did not have a section to sit with other parents and cheer on my sons, because I stood along side of them.

Soon the season will change again, a new sport will start for many. For us the same game will continue. The strategy unchanged because we have just one goal, to have another day together filled with hope.

Tuesday, October 5, 2010

There was a time when I packed my dreams away. I felt fear surround me. Afraid of the unknown and tormented by what I knew would be the future. Unable to look past the pain that had become so much apart of our complicated lives. I was consumed by desperation and destined to keep hope alive. I had seen death. I knew the horrific pain Duchenne brought to the lives of its victims and their families. I knew its grasp only tightened as it progressed to complete its mission. I lived in the shadows of despair watching the unrelenting destruction of human life. Helpless and overwhelmed, in silence I surrendered to tears. I gave in to fear and sorrow.

That was my then. My time when fear over took my strength. A time when I was so afraid. I thought that I had reached the end. Overcome by a desire to face the challenges that lay ahead of me and my sons, I have found my strength. This is my now. I am living in the moment. I am facing my fear. I have left the past behind me. The past that once pulled me down, causing me to doubt myself. Now grasping the love and strength that surrounds me. Looking in the eyes of my sons I have found the courage I never had before. I have found away to be the me I need to be. Gone are the shadows that I use to hide in. As I look around I can't believe all the love I see. This is my now, this is the moment I will give my sons.

Monday, May 24, 2010

square feet

Some where I must have missed the notes that indicated how much square footage I would need to house two motorized wheel chairs, two manual wheel chairs, two hospital beds, a hoyer lift, standing machine and tables. Tables high enough to allow wheelchairs to fit under them, strategically placed throughout my home to ensure eating and other activities would also be accessible. Not to mention the space that it would take to maneuver around two teenage bodies with out bumping their limbs on furniture. In my efforts to be super single mom preparing for the future I some how had not managed to include enough space on my list of necessities. How could I have been so pathetically thoughtless in preparing us for the future.

I watched as my youngest approached our back door leading out to the ramp that would take him into his backyard. Slowly and cautiously he worked his way through the narrow passage through our kitchen. The doorway seemed hardly large enough to fit his chair through and just as if he had become one with the chair he escaped the entrance with out a trace of scuffing wall or wheels. In all my efforts to make our home accessible we still lacked space. My oldest son Zach and I had laughed only weeks ago about perhaps needing to eliminate all furniture and use folding chairs to allow more freedom for Josiah and Cody. Now, I was faced with my next biggest challenge of all, creating an environment that can contain the footage necessary to keep my two youngest sons thriving. A home that would allow them to move freely, safely and not be so isolated to sections of the house. I was faced with finding ways to give them more independence as DMD progressed.

My list of lifts, ramps and widened doorways was only beginning and yet I found my self overwhelmed by the adaptions our next home would require to ensure Cody and Josiah would be safe and able to move from room to room with out being carried. Lifting was certainly now an issue of safety for both of my sons, as well as my self. Only a month ago while spending the weekend at their fathers home, Cody was dropped by his father when he was being transported from wheelchair to bed. We were lucky Cody only required 4 stitches to the back of his head, angels were truly watching out for Cody that day. I winced at the thought of another injury. I have been very fortunate when the boys were in my care our incidences had only been that of minor bumps. As my sons grow in size so does the hardship of caring for them. Lately it had become a common occurrence of bumping a leg on the stairs or doorway. Even furniture now seemed to pose a threat if positioned to close when lifting my sons.

Today I was feeling especially proud that I had not bumped Cody at all this morning while transporting him from his upstairs bedroom to his awaiting wheelchair downstairs. Now that he out weighed me it took every ounce of strength I had to lift him. The stairs connecting our multi level home also had become my enemy. Cody thanked me this morning for sparing his limbs from the impact he was beginning to expect daily. It almost seemed odd for me not to spend my morning apologizing for a bump or two. A friend asked me once about the kind of pain a child with Duchenne might experience. At the time I did not mention bumps and bruising. It was apparent though that these too are a very major concern. When lifting a person with limbs unable to move freely they are often at risk of injury. I felt empowered today though, we started the day off with out added pain. If I could only master bump free days every day I thought to myself. The manual and notes I joke about that are not in existence to my knowledge perhaps are something I am to write. I laughed to myself. After all it seemed adapting had become my ambition.

So now it seemed our new home was in fact becoming even more of a reality as we come closer to our closing date. In thought, I visualized the space we would gain. I beamed at the ceiling lifts I imagined I could have installed. Looking around our present house, silently I prayed that it would sell soon. Hoping it would not add financial concern to the stress I was beginning to feel from planning our relocating. It seemed years ago as I became a single mom purchasing a home larger than the square feet we had was not even feasible. Some where some how I had yet managed another milestone on my own. This was a risk I have to take for my sons. Giving my sons the chance at living in a home that could possibly address all their increasing needs gave me reason to only push myself harder to make this dream into reality. The opportunity to keep my children from feeling like cargo was something I felt strongly about. If binding us financially was the only way I could make it happen this too I would put into the hands of a higher power.

Friday, May 7, 2010

On occasion I have to admit time off from Mommy duty is like being handed time in a bottle. Rare and priceless, for some of us. As women we embrace date night, girls night out or even just time alone relaxing. Times we look forward to and deserve. Divorce has certainly given me some well earned free time. But every now and then a weekend or night where I have no plans occurs and I feel at a lost to the world. I wonder who am I with out my children or a date to remind me of my existence on earth.

I hugged and kissed my two younger sons this evening as they went out the door to meet their father. A free night, I embraced and yet felt troubled by. Every other weekend I had child free. Somehow yet this night left me feeling, its not my children I embraced freedom from. Dateless and no gal pals to hang with I was free to write all night. Somehow still I felt isolated from the world.

A glass of Sangria, a bag red vines and two hours later I still stared blankly at over 30,000 written words in front me. Mother was not the subject of my book and I had no issues to share at present with the world. My Friday night was free from "Mommy duty". I could write all night about anything if I chose to and yet the word "Mother" screamed at me. Mother I said over and over to myself. The one thing I knew I was truly good at and enjoyed, beyond words. The one thing in my life that never let me down or abandoned me. The one job I knew that could reward me in ways I never dreamed. My only real love in the world.

How fitting I thought as I sat rereading my memoirs. Mothers day weekend and I am absorbed in the world according to Mom. After all I am expected to be super mom, able to do it all, multi tasking is nothing. I can provide financially for my sons, buy a home, put one son through college, manage vacations. Exhibit super human strength, lift and carry more than my weight, be fearless and still posses the qualities that make me desirable to date.

Some how this weekend night made me miss my own mother and the unconditional love she gave. The one and only true thing I knew I could count on growing up. I was giving my boys what my Mom gave me, love unconditionally. Love that gave with out needing, love that gave with out demanding. There truly is no love like a mothers love. With out mothers none of us would be here. As a mother I loved and needed my sons beyond anything this world could offer. While the words in front of me danced on my computer I smiled to my self, it was Friday night I was home alone writing. I did not have a date but I was home doing something I loved, writing. As my thoughts began to flow, my block lifted, I found me. I surrendered to Mother, I am she, the best thing that will ever happen to me. It made sense now, my mom was letting me know she was with me.

Mothers Day weekend -I can give my sons a day where all of me is absorbed in them loving me.

Wednesday, April 7, 2010


I reached in the clear plastic critter cage that became home to our hermit crab "Crabby" to give him some fresh water. I immediately noticed he was in the same spot as the day before. Nudging him a little I saw his large claw laying outside the painted red spiderman shell he wore. Josiah stood next to me watching. As I turned the shell over I realized that I would have to tell my son his pet had passed away. This should not be to difficult I thought because, Josiah had lost fish before and even a salamander. He had cousins who had pets that had passed on. I knew Josiah understood living creatures all have to leave earth sometime, but I was not aware what he secretly feared already inside.

Josiah looked at me with his big beautiful brown eyes and very clearly asked me if he would live longer than his crab. I felt my eyes instantly fill with tears. My heart ached for him, my 12 year old knew his time was limited, and in some way this passing of his pet had made him question death. I am a word person, I write about feelings, pain and love but I was at a complete loss for words at this moment. All I could do was hold him and reassure him that he would most definately live longer than a crab. Inside I could only imagine the fear he lived with daily, knowing he had a terminal disease that would one day take his life. I wept holding him in my arms, I knew I would not ever be able to completely take this fear from him. At such a young age while other children planned for teen years he was already accepting that Duchenne would someday take his and his brothers life. I did not sleep that night and cuddled next to Josiah while he fell asleep. Listening to him breath, I also was learning to accept that one day he would be taken from me by Duchenne.

Somehow Duchenne always seemed to find ways to remind us of its constant presence. There is so much devastation and fear it brings to its victims. Never ceasing in its progression to grasp at our emotions.

Monday, April 5, 2010


I read a book about man who wanted to go hike the Appalachian trail. Having ventured myself to hike sections of this enormous trail I was very intrigued to read about his journey. He sent out post cards and emails to former colleges and acquaintances in hopes to find someone who may want to take the long arduous hike with him. Of his 40 invitations he sent, three came back. Only one was a positive reply. Pleased at last he had found a companion, although a most unlikely match, he prepared for his adventure. Setting out for a hike of a life time with another person he hardly knew, just so he would not have to go it alone.

We live in a time now where accessing people can be accomplished by just a click. We can reach people from other countries with just a few strokes of a key and never leave the comfort of our homes. Yet, many of us still lack that person occasionally to do things with. Those with special needs can find the task wearisome and even disheartening. This pain I have seen and felt in my own children, even though I have fought to keep them part of the community, the invitations to play are rare. I often am finding myself playing the role of playmate and friend for my sons. At times, even offering to care for neighbor children just to have companions for my own. Physical limitations and isolation that accompanies Duchenne can make finding friends very tiring and difficult. So much like the man in the book I have found some of the most unlikely matches to be a friend for my sons and even for myself. Josiah and Cody so eager to have a friend often open there hearts up to anyone who will give them five minutes.

Last week during Spring break while packing my two sons, their wheel chairs and two male cousins in my van for a trip to the zoo I thought about friends. When your child plays sports or can participate in outside activities or groups a buddy is not hard to find. Even as a parent you are bound to find someone to share the highlights with and develop rapports. In my thoughts I found myself thinking about Duchenne and the barriers it seemed to constantly present to us. The isolation as a family we felt at times was a reminder of the adaption that has become my ambition. The lack of friendships were now becoming part of our adaption as my sons limitations increased. I listened as a friend one day told me about his own children, the sleep overs they had planned for spring break and the activities they had been invited to. As he spoke I realized my sons have never and would most likely never experience any of that, outside of family offers. It also had become apparent to my sons that this was another loss they would have to accept too.

Happy that I had family who was very willing to spend time with my sons, I still felt sorrow. I knew we were very blessed to have so much support in our lives. But still I could see in my sons eyes the hurt as they listen to other people talk about friends and events. The removal they feel knowing they will never get to participate in the activities most children do. The invites they know that will never come.

As my nephews accepted eagerly the opportunity to push their cousins in Wheel chairs through the zoo, I knew my sons had special friends within our family. My sons were loved just the way they were. My nephews spent the day hanging out with Cody and Josiah staying by their sides never running ahead or making them feel excluded in any way.

When they day ended and I was putting my sons to bed Cody asked if family could be friends. I assured him yes, most definitely. Both my sisters were mine. Cody smiled as he snuggled down into bed saying softly that he was happy he had family because that meant he had friends.

Sleep overs and school mate parties will not be a part of our world. I know there still will be times when we might have to search for a friend to play with and face the sorrow of being left out because of mobility issues. Times will come when I will have to do the inviting to keep my sons included. I will always have to take that extra step to keep them connected to the community but my family will always be the place we will look first for that special friend.

Saturday, March 27, 2010

learning to accept help

I looked down at the stairs leading to the Target Field baseball diamond. Sensing the leather front row seats calling to my son Josiah. We watched momentarily as people climbed the stairs. Certainly getting him down there would not require to much effort but the return trip up would demand more muscle strength. Force I was not sure I might be capable of. With out hesitation my Josiah was on his way down the steps on the back of a family friend. Its a gift to have family and close friends who instinctively know when to jump in and help without being asked.

At a recent physical for my sons, I had asked their doctor half lightheartedly if perhaps I could be prescribed steroids. Smiling, I waited for a response. Our eyes engaged briefly in silence, he finally chuckled telling me it might change my feminine petite features some. At a point in my life now where lifting my sons was becoming a real hardship I felt myself feeling desperate. My son Cody out weighed me by five pounds, each day I felt more strain lifting him. I was willing to bargain, barter, to trade in my thin figure for any amount of muscle that might allow me to continue to maneuver and meet my sons needs with out needing assistance every time we went somewhere. If I could only have some extra muscle strength, just to have the ability to transfer Cody from one place to the next without the fear of dropping him or falling myself. I was not given steroids but I was encouraged to keep up my hope. I am not exactly sure what hope and the ability to lift my son have in common if anything. Hope I knew I did have, it was muscle Duchenne was taking from my sons and requiring me to gain.

Today though it felt good to not view the stairs as a threat. I was happy to see Josiah be apart of the crowd. I was pleased he was able to have the opportunity to experience something that was important to him. He did not have to sit on the side and watch other children go where he was not able. It felt good to not have my own limits affect my son.

Even though lifting Josiah for me was not so much of a struggle right now, new challenges were beginning to face us each day. As much as I fought as a single parent I knew our time was coming when we would rely and need outside help more. Sitting next to Josiah I looked out at the people around us, watching other children move freely about. There at my side was my beautiful son, content with having the opportunity to be in that stadium seat, not asking for anything more. We enjoyed the afternoon with my niece and her friend. Touring all that Target Field offered Josiah had no limits to where he could go and what he could see. We confronted obstacles and accepted help with out feeling like a burden. I am blessed, I have family willing to take whatever extra step needed to be there for me and my sons. Always knowing exactly when to be the extra muscle and allowing me and my sons to keep some pride and dignity.

Tuesday, March 9, 2010

I attended a basketball game at my youngest sons charter school this evening. Part of the schools March Madness celebration. I had managed to talk my Cody into joining Josiah and I for the nights festivities. Upon entering the school Cody began to show signs of feeling uncomfortable. It was his first visit back to this school since he had graduated from the eighth grade last spring. Feeling the need to encourage him I searched eagerly for teachers and staff that would embrace seeing him again. Friendly faces approached Cody only to happy to see him. Watching Cody I could still sense he was very uncomfortable. Almost not responding at times and making little eye contact at some points.

I stepped back a minute and tried to imagine why he would feel so awkward toward so many familiar faces. Then somehow, I saw what really was happening. As those so happy to see him asked how he was, and how things were going, it never entered my mind how those questions would make Cody feel.

Just a week ago his world was given a very harsh blow. Sitting in his chair I am sure he felt distraught with reality. The smiling faces before him he knew really wanted to hear that he was happy and doing well. My heart wanted to whisk him away and flee from the situation I had placed him in. I wanted to believe we had not changed. That the enormous hurt thrown at us last week was behind us. That somehow we could continue as we have everyday. Looking at my Cody I felt my heart ache for him. Yes, I was at times like a robot, use to hiding my pain and just pushing a head like a bull. Numb some moments to the emotions that consumed me. How could I have not thought about how all this affected Cody. He was being asked to watch old school mates run and play a sport he would never have the chance to play. He was sitting in a chair with wheels while other children freely moved. He was hiding the pain from shattered hope, that had been dealt to him days ago, to make others comfortable in his presence.

My son was showing strength because I needed it. Because I was afraid, if we did not continue to be apart of the world, we would get lost. I was still reading online and hearing the traumatic effects other parents and families were feeling. While I was encouraging my son to be strong, have hope, others around us were acting out in their devastation. Trying to grasp at any thing that might help no matter how irrational. We were surrounded by the hurt of so many and feeling the effects of their cries to us.

We stayed for the game, smiling and chatting to all the people who had been apart of Cody's academic life. Cody often turning to search my face for comfort and to help free him from the questions. We managed the evening with social grace. Holding back hurt that still rested heavily on our hearts. Cody did not once complain. Finally in the car he told me he was happy it was over and he wanted to go home and join his world again. The world where he felt safe and comfortable the world that did not remind him of what he could not do, like play basketball or run. He was happy to be home where he could just be himself and feel good about that, no matter what he was feeling inside.

Saturday, March 6, 2010

I watched from my sun room as my dog attempted to climb over the wall of snow we had piled in a semi-circle outside our door. The idea worked wonderfully keeping her contained to a specific area for her duties. That is until now, as the snow began to melt I noticed our wall also lessened in size. The sun shining bright in the sky, beaming down on the remains of winter. I watched as our dog Share romped around. Her tiny body finally free, to venture farther out into the yard.

As I sat looking, memories surfaced of a time when my two youngest Josiah and Cody would roam through paths. Paths, that I would shovel for them through out the yard. Making our yard into a gigantic maze allowing them to be able to freely stroll to the far ends of our dwelling. I could not recall any time when walking in snow was not difficult for my sons. My back would ache for days, but the joy we shared would out way the pain. I remember creating dead ends to make it a challenge for them to find the correct walkway that would get them to their desired destination. Laughing Cody would lead, with Josiah following, exploring along the journey the different shapes they would pass. The snow figures that my eldest son Zach would help me create brought joy to their eyes. With snow I piled up from shoveling, we would sculpt creatures large enough to sit my little ones on. We would spend hours playing, walking climbing. Coming in only when our feet and hands would become to cold to last another second outside.

Looking out the windows of my sun room, I found myself missing those days. How precious they were. The yard now resembling a blank white canvas. Except for the occasional animal foot prints sprinkled across the open space it showed no sign of any visitors. Thankful to have my memories I smiled. Yes, I had the photos to remind me and my sons of a time when we did not use chairs with wheels. A time when falling was not the constant reminder of what was coming ahead. Standing there I ached for just a mere second of seeing Cody walk again.

I offered to create paths for my Josiah as the first heavy snow fall surrounded us this season. Josiah smiled and just told me he wanted to help shovel the driveway for Cody. We did shovel together. Cody always had a clear path for his power chair. It was a struggle for Josiah to push the child size shovel along the driveway. He worked so diligently at my side making it clear for his older brother.

My boys did not need boots this winter, for they no longer walked on snowy grounds. Where ever they went snow was neatly removed. Snow pants also played no role in our winter wardrobe this year. I was now beginning to see grass peeking out from beneath the seasons white blanket. I listened as birds chirped in the distance. Winter was now leaving us once again. The memories of playing outside on those beautiful winter days will always bring me to a place that can make me smile and feel good. On the days where despair attempts to invade my world I will turn to these memories for my strength.

Thursday, March 4, 2010

I watched as some joggers passed by my house today. My eyes following their young thin physiques. Watching as perfectly formed athletic calves carried these athletes. They appeared almost graceful like, darting over puddles from the remains of winter. Standing there still holding the phone from the devastating call I had just received, tears began to run down my face.

Once again we were faced with another heart felt disappointment. The drug trial that had brought hope back into our lives the last few months closed. Recent medical data showed no signs of increase muscle strength had been proven. I had just been told the drug PTC124 was in fact not working. The study was closed taking with it our renewed hope. Angry at myself, I fought hard to hold back tears. I had known better than to get overly excited and build up hope. Letting my mind be controlled with my heart, I grabbed the chance to feel myself embrace the glimmer of light. Wanting desperately to believe that is was possible for science to finally have found a treatment to help stop the progression of Duchenne Muscular Dystrophy.

Turning away from my window still holding the phone, I knew I needed to make calls. I needed to have someone tell me I would find away to put aside my sorrow and continue to be the strength that I had been for my boys. Being a single parent seemed to always have me searching for someone to help me walk through the hurts. Who could I burden today with my pain, I wondered. I cried, as I let self pity flood me. In a few hours my sons would be home. I knew I would have to pull myself together. I would have to stand alone in front of the beautiful brown eyes of my sons and tell them the study was over. Somehow I had to find away to hide my tears and search for the delicate words that would not destroy all the hope for my sons.

I thought about hope for a moment. We as humans clung to it like the air we needed to breathe. Each day it kept us going facing our fear and heartache. Pulling us through despair. I wanted to stop the overwhelming disappointment I was feeling. I still had hope I thought. But, for the first time in many years I did not feel hope was something that would help Cody. Reality screamed at me, his door was closing. Cody was losing time. I knew this disease like the back of my hand. I had seen it take my brothers lives. I saw how it ripped apart family members. I knew how it broke peoples spirits. Most importantly I knew it killed. It killed dreams and hope, before claiming its victims.

Drying my eyes, I knew courage was something I did have in me. For now it appeared Duchenne was winning this battle. However, the fight was not over and for my sons I would be the warrior striving to find some weapon to slow my enemy. I would face this moment with courage. I would not let My beloved children feel we had been defeated. We would be strong for each other, we would be strong because that was all we knew how to be.

Saturday, February 27, 2010

I spent sometime this morning writing on my new pink netbook. A recent present and incentive I gave myself for the efforts I have been putting forth towards my writing. Before I could hear any little voices calling for me to come and assist in getting them out of bed, I wrote.

I thought about Christmas when I was ten. About the full stair case descending down into our living room of the old two story house I grew up in. This particular Christmas morning I recalled the stairs. It was very early in the morning before my parents had woken up. My then two brothers and younger sister and I could no longer control the anticipation that had built up in us. Not being able to wait any longer we attempted to maneuver George and Richard ourselves. My younger sister and I had to manage somehow to get my brothers who had Duchenne down the stairs. On their butts we encouraged them to slide. Standing behind them cheering and begging for them to hurry. Step by step on the grey firm burber carpet they slid. Chattering excitedly about the presents Santa had left the night before. Hoping to find things that we had been wishing for all year long. I can not recall what we did get that year for gifts. However, the memories of George and Richard sliding has etched its way permanently inside my mind. It seemed to take forever watching them move from step to step. Pausing occasionally to share the discomfort each impact of landing gave them. At one point to eager to wait any longer I offered to get in front of my brother George and pull him down by his feet. As he hit the first step with is bottom end we both knew this was not going to be the answer I had imagined. I wanted so badly to just be able to pick up George and carry him. At ten my size was only large enough to lift my then four year old sister. Christmas called out to me from under the tree. I peeked over the oak railing at the shinning wrappers and glistening bows. So close and yet still feet away. Held by a promise to my siblings that we share in the joy of Christmas together we diligently worked to get off those stairs.

I do not have memories of running to the beautifully decorated tree to be greeted by presents left from the jolly man in red. I do have wonderful memories of struggling to help my brothers reach our tree to share in the joy of discovering what was inside the wrapped boxes. That particular Christmas I learnt Duchenne was a family disease. It attacked my brothers physically but it also ripped at our hearts and minds. Holding us all prisoners. It not only left my brothers muscles weak and wasting it also left us as a family tormented by heart ache and haunted by loss. Duchenne Muscular Dystrophy stole my brothers lives. It robbed us from physical strength but it did not take the strength we shared as a family. It did not take away the love we had for each other and the moments of joy we shared together from defeating its impending opposition we faced daily.

Wednesday, February 17, 2010

I sat writing today hardly aware of the time and what day it was. My mind I noticed had been slipping lately. Important crucial duties that were required of me I fumbled through. Tears seem to flow more freely even though I deny there existence. Stopping for a brief moment a small voice somewhere from with in me seemed to make logical sense.

As I watched the decline of my Cody's Strength I to was losing parts of me. While this disease was taking from Cody I too struggled to hang on to the me I knew I had to be. Diligently I watch Cody's constant fight to maintain any strength from his dying muscles. Silently and alone reliving the pain my parents must have felt with losing my brothers. It made sense that since my decision to attempt writing a book only opened more unhealed wounds and increased my awareness of the pain I felt and the pain to come. I thought about my many actions to free myself from moments of sadness. Trying to Bring myself to places where I did not feel the sorrow and loss that controlled every part of my being. Hoping to find ways to try to forget for mere seconds how weak this disease left me feeling. The failed attempts to hide the guilt that grew inside of me for feeling a need to take time off. The failed me I am appearing to be to those around me for falling victim to weakened moments. The tormenting haunting I felt for things I would never have.

While I continue this journey with my sons I know many more emotions will grasp at me. I can only hope despair leaves some of me left to survive my biggest battle to come.
I am thankful for the few brave souls who before me shared there heart felt stories. Grateful to those who had the courage to express pain and allow strangers to read intimate details of their sorrow. Those who lived through shame for there less desired actions and faced scrutiny to reach a healing point know that often forgiving ourselves is the hardest part of healing.

Friday, January 29, 2010

Cody walked to day his steps were few and very calculated. He struggled so desperately to let each foot raise and again come to rest on the floor beneath him. My eyes filled with tears of great joy and yet sadness. My beloved child before me fought so diligently to obtain some strength in his dying muscles. This was a good day, I reasoned, within myself, Cody walked. He took steps, no matter how few, some were better than none. But by comparison to what? Each day more fear grows inside of me as I become his legs and arms. . Alone I watch this beautiful child loose himself to a disease that shows no mercy and strips away all hope . While I smile at him now and sing praise to the five steps he took my heart breaks in silence. Later within the walls of my own room my tears of the sorrow yet to come will flood me. I will cry. I will face my greatest fear and challenges. Alone I will pull myself up and out of the darkness I feel, and be all that my beautiful children need. Through shaking hands and sobs of heart felt pain and loss I will carry Cody forward.

Josiah pulled himself up from the floor today. Though he took much assurance that he could do it he finally raised himself to a standing position. It took so much for my little one to make his weakening muscles allow him to stand. His eyes showing the enormous strength he puts forward into such a simple task for most of us. I rejoice in tears. He managed a task Cody no longer can. We embrace to celebrate another moment of victory. Inside I feel torn and fear growing. Reasoning again I know this is a good day Josiah stood by himself. When the day ends, again I will cry alone my tears of loss. Then find comfort by remembering moments of a time when life felt different. For now I will enjoy Josiah and celebrate all his abilities. We will take one day at a time. My fear and sorrow I will hide today. I will be strong for Josiah. I will be the muscle he needs.

While I fight my own fears and search for courage I pray that I can be strong enough to never let Josiah and Cody feel alone. I know I must put all their needs first and be the forces they will need to get through each day. While holding back my tears I will have to dry theirs. To help them face each day with courage I will have to hide my fears. Even though I walk alone at times I will have to let them know I will be with them always. As the sun rises tomorrow so shall we, together.

a simple walk

I took a walk with Jesus, yesterday. The thin layer of melting white snow crunched under our feet. I shivered from the January north wind and pulled my collar tighter around my neck. Feeling happy, I had chosen boots to wear for our walk. Jesus walked only in sandals and a white flowing robe of cotton. We walked in silence for some time listening to the sounds around us. From the trees above our heads birds could be heard chirping and some children’s laughter echoed from a sliding hill in the distance. Then ever so gently he put my hand in his. Speaking not a word he gave my fingers a light squeeze, then rested his fingers softly against mine. We walked some more holding hands in silence. I felt warm again. The breeze that had been whipping against my cheeks seemed to lesson and no longer sent chills though my jacket. I felt warmer, safe and somewhat at ease. Without a single word I knew why Jesus had came to be with me now.

“Jesus” I finally turned to him and said, “ I am not the one”. We stopped walking for a moment and Jesus turned , stepping in front of me. Tenderly, he put his hand under my chin lifting it enough to look into my sad eyes. He gazed at me with so much love. So beautiful his face appeared. Tears had been building in his deep brown eyes. I watched as one trickled down, sliding so gently against his soft smooth skin. “But you are” he whispered softly to me. I looked away for a moment then back to his eyes that filled my heart and soul. . “It is so hard, I can’t do it alone. My heart feels so broken and I am so scared” I paused “ and alone”. I whispered softly, hearing my words echoe as is spoke. “ I feel so much pain and loss”. He put his arms around me and pulled me closely to him. I could feel the beat of his heart and the warmth from his body. I let him hold me, sobbing softly in his arms. Somehow he made me feel strong and beautiful. Not the scared lonely soul I knew, as me. The single mother who buried herself in the special needs of her two youngest sons. A beautiful mess broken and used in every relationship. He made me feel loved something I had only known as a mother.

“I chose you,” Jesus said holding me tightly. “You are the one”. He spoke gently “You are part of the plan, I need you”. “Before you were born I knew I would choose you,” Jesus said stroking my hair. “I placed two of my most precious ones in your care because I knew you would not fail”. He breathed deeply pulling me closer. “Jesus I am falling apart” I cried. “ That is why you are so special for the job, you are facing your fear”. Jesus replied. “You do not hide from the pain or ask why. Only that I be with you.” His words meant so much to me. My Jesus believed in me and for the first time in so long I did not feel alone, in his arms I wanted to stay forever. I looked up into the eyes of my lord. There was no place more peaceful and loving than this time I was having with him now. Jesus brushed strands of hair from my face and smiled. “You will feel pain and you will feel alone. You will cry a river of tears. You will love and you will be loved. You will live and you will die, just as I”. He said, kissing my forehead gently with his soft lips. Sighing I looked down. He put so much faith in me, this man who stood before me, who died for me. Raising my chin again to look in my eyes he said “ trust in me”. I knew I would not let him down. I had come this far.

Silently we walked some more hand in hand. Then Jesus turned once more to me “your children will guide you and from them you will find strength, they are my gift to you.” He said. “You will shine through their eyes”. I looked away and realized we were at my front door. Looking into his eyes, we embraced for one last time. I rested against his chest wanting to remember this time forever. “I will always be with you” Jesus said. I held him tight. This man gave me love, like, I had never known. He did not ask me to change or be different. He did not criticize or make selfish demands of me. Jesus did not judge me for feeling scared or different. He trusted in me. He helped me to see my strengths and trust myself. He helped me to see all that I was meant to be. My fingers slowly slid down his back as I drew a deep breath. I stepped back to look at him one last time, his beauty captivating me. I knew we would be together again someday. For now, I was needed here, with my sons. He had helped me to find my strength and trust in myself. He knew me so well when I needed him most he came to me.

It was snowing again and the wind began to pick up but I still felt warm. Jesus turned to walk away and looked back at me for one last time “ I love you” he called out to me. I smiled I was someone beautiful and special because of him.

Monday, January 18, 2010

Cody told me today" not being able to walk sucks".
Yes, I agreed, it did.
I saw some new anger in him I had not really noticed before. He wanted new batteries for his WII remote control, which just happened to be upstairs in the kitchen. I asked him to wait while I finished assisting his brother. Josiah had been building with Lego's and was feeling his own sense of dependency from Duchenne. He had been struggling to open some new packages of blocks. Lacking the strength to pull open the plastic sealed bags by himself, I was needed. Cody strapped in his Easy Stand 500, a machine that helps him to stand, waited. Throwing his remote control to the floor and using some more verbal phrases he let me know how much more it sucked having weak muscles and that he wished he was stronger.

Wow, I thought while I fetched him fresh batteries, I had not heard him have such anger towards his disease before. I had heard him in the past become sad or frustrated but anger towards his disease was new. I too also wished with everything in me that he could walk. Two new batteries later, letting go of his anger he returned to his game. I still felt troubled. Anger was normal and necessary but, it still made me feel helpless toward him at those times.

I went back to folding my laundry, but anger felt as though it was creeping up inside me now. I peered out the front window and watched as some children slid down the snow covered hill across from our house. I smiled for a moment as I recalled the days when I walked to that hill with my boys. Josiah perched on my hip, while I pulled Cody on a sled. Zach running ahead of us dragging his own sled. I climbed the steep icy hill toting Josiah in my arms and Cody on a sled tied to my waist, up the hill we went. My feet side ways to keep from slipping, very determined to let my children go sliding. Down we would slide, Cody in the front, Josiah nestled in between us. It felt good to remember. It felt good having memories of a time that did not present us with barriers I could not brake through.

I came back to now. A Little voice could be heard calling me. "Mom, I dropped Lego's. Help I can't reach them". I was needed again. I helped Josiah retrieve his Lego's. The anger was creeping back inside of me again as I heard Cody attack being weak again, on behalf of his brother. I decided today was our angry at Muscular Dystrophy day. I would join Cody with his anger towards this disease. I would sit down and write my feelings out. I would list all that made me mad or feel helpless in someway. I would acknowledge they existed and hopefully let them go.

I was not prepared for the tears I had apparently been building up. Nor the flood of feelings that erupted. The one thing I did know was, this disease always present in my life was also always taking.

I thought back to when my brothers were alive. Struggling with this same horrific disease. I remembered days when they would cry from being frustrated, angry or bullied. A neighbor girl one day smeared chewed bubble gum in my brother Richards hair. Forcing him to get his beautiful blond curly hair shaved off. I thought of the day when my brother George had a brick tied to his leg by another so called friend. He was left alone unable to walk and unable to remove the brick. I remembered the days when my father so depressed and unable to cope with his sons crippling would drink until he passed out. I remembered my mother so tired from lifting and carrying them would collapse in a chair exhausted. I thought of the days when my sisters and I would try to help with lifting and bringing them to the bathroom. I recalled the fear we felt when they would get very sick. I let the painful memories of their deaths surface. I let loving memories and heartache flood me.

I also remembered hating this disease too. Just like Cody was feeling now. It robbed, it stole, it showed no mercy. Never ceasing in its progression. It caused loneliness, anger, depression it took with out boundaries, it killed. I went back in thought to the painful day when Cody was diagnosed. Then to the day when Josiah was diagnosed. Times that I had never felt more alone in my life. I cried. I thought about the pain it added to my crumbling marriage
. I thought about the pain it brought to all three of my sons. The sacrifices my son Zach has had to make while I care for them as a single parent. I thought about all the relationships it affected in our lives. I sat and I cried. I thought about the 480 days ago when Cody stopped walking. I recalled the last time 6 months ago when Josiah was able to walk upstairs. I cried because last week I dropped Cody while lifting him. I wiped tears away and thought about the hoyer lift that only works on one level of my multi -level home. I cried because it was becoming increasingly harder to take my sons any where alone. I released tears because I was afraid to think past today. I was angry because I knew the disease was still here to take more. I cried for Cody and Josiah, for the life I knew they would never live. I embraced my pain, reclaimed it and sent it back into the deepest part of my soul. Hoping to not have it surface again for a very long time.

Then as if like clock work I dried my eyes and went on with my day. After all, I still had to be a mom. Assist my boys, be their arms and their legs. Lift them, make meals, clean my home and most importantly let them know they are loved and needed beyond words. I had to once again put on my smile, hold my own hand and offer something positive to my sons, me. The best me I can possibly give. The me who knows; fear, heartache, compassion and love.

Tuesday, January 5, 2010

another day in our new beginning

It was a delight to spend a warm hour watching my boys swim today. Outside the frigid artic air brought the temperature to zero for a high. Enclosed in this glass room we could see snow all around us but the air felt almost tropical. Cody and Josiah with their newly appointed grandma/friend and swim assistant Janice laughed and splashed while stretching their limbs. I have spent a good part of my life trying to bring special people into my sons lives. When physically challenged, playmates are not always the easiest to find. Finding a special person that can make the connection means so much to a child that just wants a friend. Cody and Josiah had connected with Janice, it was wonderful to see. Cody so free in the water shined as he brought himself to a tall standing position next to his new favorite friend grandma Janice. Oh Janice, I thought, you have know idea how much Cody and Josiah look forward to spending time with you.

This was the kinda day when my energy level soared. I sat on the sides with my faithful companion for swim day, my sister Marie,
enjoying. Our routine together we had worked to perfection. She assisted them with showering, while I did the drying. It is truly a connection when you have a partner that knows the exact moment to assist with out words. Recently it seemed Cody was becoming increasingly harder to lift and maneuver. On a few occasions, I found myself somewhat unable to transport him alone. Marie with out words or hesitation, found her angle to slip in and help turn him in my grasps, to where we both could support his weight. It seemed as the temperature dropped outside transporting also became harder. Today was colder and I had my extra muscle, we were ready. I had Marie.

Moving my sons from building to building on any given day requires patience and strength. When the weather is most certainly not cooperating and icy walk ways are factored in, fast, just is not fast enough. Slightly chilled we were at our second appointment for the day and met by a wonderful young man. I will refer to him as J.

Very eager and happy to meet Cody, he can not wait to introduce himself. J is also participating in the drug study with Cody
. Second in the world to follow Cody, he excitedly shares his hope and optimism. With in minutes J and his parents are asking questions, and sharing in their excitement. I see in J the same hope and fear I see in my sons. I can not help but think we are some how meant to meet, just like this. For this day I know will play an important role for what lays ahead. We have met some one else who can relate to this new phase in our lives. Someone else to walk down this road with. Looking at Cody and J, I can see how important it is to have a special friend when so much of your life is closed. A special friend who shares this open door.

I read an article not to long ago on the subject; "the difficulty of making new friends after 40". I understood this very well. Having to start over after my divorce I knew what they meant, why 40 and beyond was so different. Anyone who has had children also knows how life changes, friends are no exceptions. I am a firm believer when one door closes another opens. My motto for reentering the dating world.

Today sitting before me was J. A bright spirited young man embracing the opportunity to meet my son and share this journey. A new friend for Cody and myself. Wednesday together they begin this journey in to the next phase of their delicate young lives. I look forward to sharing our strengths and hopes. I look forward to embracing our moving forward in finding the cure for DMD. I look forward to seeing Cody and J walk together.

Monday, January 4, 2010

2010 a new year a new beginning

My oldest son Zach told me about a story of Internet bullying this evening. It was a story of a young man in high school that had been a victim of Internet bullying, tragically it lead to his suicide. He had kept this abuse hidden from his family and apparently his friends. For they too were not aware that it was troubling him so deeply. One evening his parents found him hung in his room. His tragic story now a topic of discussion on line. My heart ached at the thought of someone feeling so alone that they would end their life over words from someone they hardly new. I could not even imagine as a parent what the pain would be like to loose a child that way. It appeared this young man had not been a loner. He had friends, hobbies a family but, something touched him that know one else saw. Zach had brought another question to mind. If you have positives in your life, how can a person just let go for something negative. I could not let that thought go. It echoed in my mind.

While tucking my two youngest sons in bed I kept thinking back to this story. I leaned in to gently kiss Josiah good night. It felt good knowing he was safe here with me. I walked over to Cody to give him a kiss he beamed "I love You mom". My beautiful sons were all home safe, appearing to be happy, the way it should be. I had to take a peek into Zach's room he too was home safe, playing xbox.

As parents we try so desperately to protect our young from harm. For most of us it is just natural instinct, never requiring a second thought. With my own three sons I have played the over protective parent many times, even though it may not have always made me very popular. We've had many conversations about bad people. More times than I can count I have questioned them regarding abuse of any kind. I thought for a moment, does that fear ever go away for a parent? The fear that their child could become a victim to some evil act. With so much pain already in the world how do we combat the unseen villan?

Having two sons terminally ill, I have always carried a fear of my sons being bullied. Growing up I can remember my brothers who also had the same disease as my sons, being brought to tears as they became the target for a bully. Angered by their pain of being bullied and made fun of I wanted to search for the bully and confront him. I was not successful at avenging my brothers very often. It did feel very good though when I began to date, to let a few neighborhood bullies know I had not forgotten how they treated my brothers. While I was referred to as a hottie a date with me would not ever be possible. I wonder what makes some of us stronger than others? What makes our skin thicker than that of someone else? Could there ever really be an end to bullying?

I have spent countless hours looking at the differences and similarities of my sons lives to that of my brothers. While my sons are growing up in a single parent home unlike my brothers we do have a loving support system with my sisters and their families. Living in a time where we do not tolerate discrimination has certainly played a significant role of how my sons are treated too. However the bully still exist and he has more tools than before. I can not claim my sons have never been bullied. I can claim I am not afraid to do what it takes to confront or stop a bully. How can we really measure though the damage that hurt has caused?

Living with something that makes us different from every one else such as a crippling disease often makes one an easy target to be bullied. The bully whom ever he may be looks for a way in to make himself feel better. How do we get past the bullying?

My heart goes out to all the victims of a bully. If I could give you one thing I would want you to know that you are loved. The thoughts of one loser does not define who you are. Find that positive point in your life, run to it hang on to it, let it give you purpose and strength. Never be afraid to share your pain after all love can heal.