Snow was on the ground when we awoke this morning. A lite dusting had appeared in the night. As I opened my door to let out the dog a sharp sting could be felt from the wind. It Seemed our seasons had truly changed. The trees were much barer. On the ground laid massive piles of leaves that occasionally were whirled around by the cool autumn wind. Outside indeed was different.
With this new season I wondered would it bring along change for us. Change that we would embrace. Change that we desperately wanted and needed.
I felt as though every step forward lately sent me back spinning to no where. My time in the past months had really not measured up to what I expected of myself and of some of those around me . The only thing that did seem to be clearer was the way I was beginning to see others label anyone different.
Cody asked me the other day, why people look at him when he goes places. He did not like it and wanted them to stop. His beautiful eyes eagerly searched my face for an answer. Like any mother who protects her young I new I had to tell him something that would make him feel good. "Because the world wants to know why someone so beautiful is in a wheel chair". I said to him. "They wonder if you hurt or if they can help in some way". Cody smiled at me for a moment. " Mom they stare" he said. "They do not smile or say hi". "Just a dumb stare". He looked down as he spoke his smile fading. I knew the stare, he spoke of. The look, he felt.
My older sister Marie had sewn Cody a cape last Fall that we called the invisible cape. It helped Cody feel more comfortable when he was out in public places with large crowds. He could feel hidden and safe from the stares in the large hood. The cape helped with the transition from walking to wheelchair for Cody. A time we all struggled with. A time we all needed to adapt too. This was good he was talking to me now about his feelings. Cody was not showing me anger like he had in the past. He seemed more sad that this was happening. I have to admit I felt some what helpless. I can no more change the people than the seasons. This was something I could not fix or change but ,once again show Cody he would have to accept this also in his life.
I spent the rest of the morning while my sons were in school thinking about people. I thought about the past months and the changes I had experienced in relationships with friends. I thought about how my three brothers who also lived with DMD had to deal with stares and comments. How often I heard hurtful remarks from people who claimed to be a friend. While there are more services to help the disabled, and we see less discrimination, people are still uncomfortable around someone who seems different. Why even the people in my life who have known my sons since birth seem unable to feel comfortable, that this is part of who my sons are. It tires me deeply trying to help my boys fit in. I want to carry a sign at times saying-Its fine to not treat them like a child who can run, and walk with no limits. My sons need to have those around them accept them. Adapt to the physical changes that are happening to them.
We adapt to the old, the toddler, pets, just about anything. We had yet to be invited to a home that was made accessible for them even temporarily.
I thought about how Cody found himself feeling safe and secure in his home. I had to agree there were no uncomfortable stares here. He had room to move and his needs were met here. We did not feel like we were imposing on anyone or intruding. Cody could be happy or sad no one thought less of him. I took comfort knowing that all three of my sons loved home and while the weather changed outside my sons were comfortable and safe inside.
Cody came home from school that day happy, after all he did not have to go outside of the school room today.
My night was spent still pondering change. I had experienced the demise of some friendships this summer. Which left me feeling some what sad. I was at a time when I needed more understanding and love in my life. I once again, could only find comfort in my love for my boys.
Feeling some what worn out from the last five years, of putting the pieces back together from our shattered life, the spinning feeling returned to me. I appeared to be no closer at controlling my relationships with anyone outside my family. One step forward seemed to make me feel in less control and labeled for my choice.
My son Zach can see so much more beyond his young years of 19. He is probably, second to my friend Cindy, the most non- judgemental person I know. Not to long ago I learned he was very upset to hear that a close friend of mine had stated that she knew more about his feelings than I did toward someone in my life this past summer. Her interpretations were untrue. Zach being a very forgiving person moved on keeping in mind some people have special needs. Some people are shallow, selfish, rude even. Zach made a very good point how we just need to adapt. When ever someone that may be some what difficult is around we need to adapt. I felt sad that friend and friendship did not necessarily come together with some of my relationships. Totally getting what Zach meant it made sense. I would not give her nor anyone else the opportunity to drag me down to there unhappiness.
As the season changes and my friendships I hope I will still continue to see the depths to which living was intended to be. While not all changes are pleasant or easy many though will take us to great lengths. Such as finding peace within our world and ourselves. Create new relationships that will allow us to grow richer in love. Change can help us find new and better ways to help each other. Give us in sight to who we really are and who our friend really is. As every season brings about change we are given a chance to see the world in a new way.