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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.

1 comment:

  1. well written, but i have to say, dont give up on friends just yet. my son austin has made some real keepers this year! his buddy ben has some issues (similar to autism) another friend collin comes over to swim in our pool a few days a week with austin , colins mom says he has no real friend because he is different (speech delay, a real cutie though). i think you just have to look for the kids who aren't that into playing sports, or bike riding, geeks are perfect LOL! they play video games, watch movies and talk just like "normal" boys. i have 2 with duchenne, 2 step kids, and a toddler. i am my kids mom, nurse, teacher, cook and maid. although i enjoy their company i refuse to become their entertainment or playmate, unless i absolutely have to. we are always the host for play dates but it is worth it to us! take care, wish we lived near by!