Follow by Email

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.