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.

time

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.

friends

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.

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.