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.

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.

Seasons

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.

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.

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.

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.