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Saturday, February 12, 2011

Path ways

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

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

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

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

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

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

Lego athletes

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

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

Friday, February 11, 2011

impact

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

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

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

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

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