t was a delight to spend a warm hour watching my boys swim today. Outside the frigid artic air brought the temperature to zero for a high. Enclosed in this glass room we could see snow all around us …

t was a delight to spend a warm hour watching my boys swim today. Outside the frigid artic air brought the temperature to zero for a high. Enclosed in this glass room we could see snow all around us but the air felt almost tropical. Cody and Josiah with their newly appointed grandma/friend and swim assistant Janice laughed and splashed while stretching their limbs. I have spent a good part of my life trying to bring special people into my sons lives. When physically challenged, playmates are not always the easiest to find. Finding a special person that can make the connection means so much to a child that just wants a friend. Cody and Josiah had connected with Janice, it was wonderful to see. Cody so free in the water shined as he brought himself to a tall standing position next to his new favorite friend grandma Janice. Oh Janice, I thought, you have know idea how much Cody and Josiah look forward to spending time with you.

This was the kinda day when my energy level soared. I sat on the sides with my faithful companion for swim day, my sister Marie, enjoying. Our routine together we had worked to perfection. She assisted them with showering, while I did the drying. It is truly a connection when you have a partner that knows the exact moment to assist with out words. Recently it seemed Cody was becoming increasingly harder to lift and maneuver. On a few occasions, I found myself somewhat unable to transport him alone. Marie with out words or hesitation, found her angle to slip in and help turn him in my grasps, to where we both could support his weight. It seemed as the temperature dropped outside transporting also became harder. Today was colder and I had my extra muscle, we were ready. I had Marie.

Moving my sons from building to building on any given day requires patience and strength. When the weather is most certainly not cooperating and icy walk ways are factored in, fast, just is not fast enough. Slightly chilled we were at our second appointment for the day and met by a wonderful young man. I will refer to him as J.

Very eager and happy to meet Cody, he can not wait to introduce himself. J is also participating in the drug study with Cody. Second in the world to follow Cody, he excitedly shares his hope and optimism. With in minutes J and his parents are asking questions, and sharing in their excitement. I see in J the same hope and fear I see in my sons. I can not help but think we are some how meant to meet, just like this. For this day I know will play an important role for what lays ahead. We have met some one else who can relate to this new phase in our lives. Someone else to walk down this road with. Looking at Cody and J, I can see how important it is to have a special friend when so much of your life is closed. A special friend who shares this open door.

I read an article not to long ago on the subject; "the difficulty of making new friends after 40". I understood this very well. Having to start over after my divorce I knew what they meant, why 40 and beyond was so different. Anyone who has had children also knows how life changes, friends are no exceptions. I am a firm believer when one door closes another opens. My motto for reentering the dating world.

Today standing before me was J. A bright spirited young man embracing the opportunity to meet my son and share this journey. A new friend for Cody and myself. Wednesday together they begin this journey in to the next phase of their delicate young lives. I look forward to sharing our strengths and hopes. I look forward to embracing our moving forward in finding the cure for DMD. I look forward to seeing Cody and J walk together.
Posted by Raf at 2:15 PM 0 comments
Monday, January 4, 2010
2010 a new year a new beginning
My oldest son Zach told me about a story of Internet bullying this evening. It was a story of a young man in high school that had been a victim of Internet bullying, tragically it lead to his suicide. He had kept this abuse hidden from his family and apparently his friends. For they too were not aware that it was troubling him so deeply. One evening his parents found him hung in his room. His tragic story now a topic of discussion on line. My heart ached at the thought of someone feeling so alone that they would end their life over words from someone they hardly new. I could not even imagine as a parent what the pain would be like to loose a child that way. It appeared this young man had not been a loner. He had friends, hobbies a family but, something touched him that know one else saw. Zach had brought another question to mind. If you have positives in your life, how can a person just let go for something negative. I could not let that thought go. It echoed in my mind.

While tucking my two youngest sons in bed I kept thinking back to this story. I leaned in to gently kiss Josiah good night. It felt good knowing he was safe here with me. I walked over to Cody to give him a kiss he beamed "I love You mom". My beautiful sons were all home safe, appearing to be happy, the way it should be. I had to take a peek into Zach's room he too was home safe, playing xbox.

As parents we try so desperately to protect our young from harm. For most of us it is just natural instinct, never requiring a second thought. With my own three sons I have played the over protective parent many times, even though it may not have always made me very popular. We've had many conversations about bad people. More times than I can count I have questioned them regarding abuse of any kind. I thought for a moment, does that fear ever go away for a parent? The fear that their child could become a victim to some evil act. With so much pain already in the world how do we combat the unseen villan?

Having two sons terminally ill, I have always carried a fear of my sons being bullied. Growing up I can remember my brothers who also had the same disease as my sons, being brought to tears as they became the target for a bully. Angered by their pain of being bullied and made fun of I wanted to search for the bully and confront him. I was not successful at avenging my brothers very often. It did feel very good though when I began to date, to let a few neighborhood bullies know I had not forgotten how they treated my brothers. While I was referred to as a hottie a date with me would not ever be possible. I wonder what makes some of us stronger than others? What makes our skin thicker than that of someone else? Could there ever really be an end to bullying?

I have spent countless hours looking at the differences and similarities of my sons lives to that of my brothers. While my sons are growing up in a single parent home unlike my brothers we do have a loving support system with my sisters and their families. Living in a time where we do not tolerate discrimination has certainly played a significant role of how my sons are treated too. However the bully still exist and he has more tools than before. I can not claim my sons have never been bullied. I can claim I am not afraid to do what it takes to confront or stop a bully. How can we really measure though the damage that hurt has caused?

Living with something that makes us different from every one else such as a crippling disease often makes one an easy target to be bullied. The bully whom ever he may be looks for a way in to make himself feel better. How do we get past the bullying?

My heart goes out to all the victims of a bully. If I could give you one thing I would want you to know that you are loved. The thoughts of one loser does not define who you are. Find that positive point in your life, run to it hang on to it, let it give you purpose and strength. Never be afraid to share your pain after all love can heal.
Posted by Raf at 8:42 PM

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