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 atlas 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
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.
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.
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.
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.
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.