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.

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.

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.

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.

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.