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Saturday, September 22, 2012

Beyond Barriers

I surveyed the large canoes as they rested in the water.  Not  exactly sure how this next adventure that awaited for me and my sons would accommodate all our needs. I looked back at Josiah and Cody where they sat waiting for me, with their 16 year old cousin Nathan- who had generously  agreed to accompany us on our  family camp trip.  He was my muscle support for the weekend.  Standing at 6ft he easily could help assist with lifting Cody, allowing me and my boys to participate in MDA's family fall camp.  The weekend had gone so wonderful and this last adventure was the perfect ending to yet another experience  I  shared with   my sons.    Yes, the the wilderness guides that were scheduled to take us on this canoe ride had assured me that my boys would be supported comfortably and safely during our trip. I was anxious and excited to be able to have this opportunity with them.  I threw them the thumbs up, immediately seeing smiles cross their faces.

Carefully they approached Cody and with my suggestions of the two man lift, raised him from his electric wheel chair into the awaiting canoe.  Next to Nathan, Cody sat fitted with back support and an oar strapped to his hand allowing the ability to help paddle.  I marveled at the sight, Cody placed the oar in his hand down in the water.  Never did I imagine I would see this happening.   Carefully I followed as as my little Josiah was cradled in to the next guides arms and carried to the canoe. Gently and smoothly  he was placed in the specialized seat. Tears of pure joy filled my eyes as I stepped back to capture the moment on film.  I paused looking over at the three of them.  It had been such a wonderful summer and this moment now just added to all the wonderful memories we created together.  This  was the world I wanted and strived for, for my sons.  This  moment right now, seeing past the ugliness that DMD caused  our lives.  Yes, I was convinced I had did good this summer in  CREATING LIFE BEYOND BARRIERS for them.   I climbed into the canoe next to my Josiah, wanting to savor the joy from what we were sharing.  A single tear trickled down my cheek as I looked out into the water,  I had and was still succeeding in my ambition, creating an accessible world for my two physically challenged sons. I smiled and felt joy fill me, embracing all that was good in our world right now. 

  

Wednesday, September 12, 2012

age is more than a number

I glanced at the calender and saw the scribbling in ink that I had marked earlier.  A day highlighted only to remind me of its true meaning. Aging.  My aging to be more specific.    I sighed heavily,  and for a split second tried to imagine what it might be like to see it differently.  No, the thoughts that came to me brought me right back to reality.    Aging was simply down right scary. 

I finished cleaning the dishes that remained from  Bill, my brother-in-laws surprise 60th Birthday party, we had thrown  the day before.  The event turned out wonderfully.  I felt pleased we had managed to keep him at large from our planning and pulled it off in spite of a few minor set backs.   My  sister Marie his wife did not let breaking her arm slow her down.  With her arm in a cast she still worked her magic in the kitchen, creating side dishes to accompany the delicious fried chicken she had  decided to have catered rather then put her and myself through overwhelming stress by creating a feastful buffet.   Unfortunately also though the weather had not cooperated completely.  Strong  winds developed in the late afternoon, which left us celebrating indoors. I could still see the decorations my great nieces had helped me put up outside, as I looked out the window.   It was  a little disappointing that our efforts had not really created any impact on keeping with our luau theme. But what left me truly troubled  was that none of my brother in-laws family made an appearance at his party.  In spite of all my sisters attempts at inviting them and reminding them of the event, we were left with no shows-for lack of any other way to put it.  It saddened me some,  that his siblings did not want to have the same closeness he shared with my family.

"Yes",  I said to myself as I scanned the room for more remnants of the fiesta, "the event did in fact go very well".  I was so happy I could be a part of  something special for Bill. He was truly my big brother in every sense of the word .  This was the least I could do for the man that gave so willingly of himself and accepted my sons so lovingly into his world.  I smiled thinking about the morning before when he had agreed to take my sons to the MN Gopher football game, that I manged to get tickets for.  It pleased me so much that I was able to have a strong male role model for Josiah and Cody.  A male figure other than their  big brother Zach to bond with.  With his own children now grown and having children of their own,  rather than enjoy his freedom of an empty nest and the ability to freely  come and go with it,  Bill took on the role as a Personal Care Attendant  (PCA) for my sons.  With out any hesitation he and my sister Marie adjusted their own lives to readily make  themselves  available to help assist  me with the care of my two younger boys almost daily.

So now with the dishes done I was left alone in thought again with my obsession on  age.  I actually felt an ache inside as the number of my own years flashed in my head.  I stood staring out the window that over looked my large deck facing the lake.  It was not the wrinkles I feared, or the softened flesh I would develop, where  once my toned muscle existed. It was not the fact I would be celebrating yet another birthday home  with my boys, wishing  for just once to have a bit more. Enjoying the thought of a date out, that I did not plan.  My mind drifted for a moment.  I tried to imagine  what it might be like to celebrate a Birthday over a romantic dinner.  Gazing into the eyes of someone who thought of me in a special way, knowing that he had planned this time for just me.  As fast as that thought entered it fleetingly left me. A concept to foreign to me. Yes I had had romantic dinners since my divorce but sadly never dinner out on the Day or actual time spent with some special guy on my Birthday.  "Hmm" I thought, I still have hope.

   Now openly and very honestly I admit there is a bit more to my obsession,  "Fear of growing old alone".  Not the fear  that I might live a life without a partner,  but that the hands I hold now daily, through everything-  are my two younger sons in wheelchairs, it was just that simple.    Fear, because it is solely up to me to make each day work for us. Its the   fear that each year,  I feel,  I have to strive so much harder to ensure my sons will be fully cared for.  Age haunting  me, almost scoffing at me  because as my own body wears,  I have to find ways to  still be able to lift and care for my sons.  An even  greater  fear, that as I age so do my terminally ill sons.  Okay- I said it,   fear that I want them with me as long as I am here,  but realistically,  Duchenne shows no mercy, in the end it will win.  Gut wrenching heartache, knowing the devastation- that is to come, when I will no longer have them to hold.    At times I almost feel as though I am drowning  with the realization that right now today is as good as it will ever get for them, for me, for us.  Worried that if I slip up, my mistakes will have  the most impact on my sons.

I picked up a photo of me with all three of my boys.  Cody and Josiah were still able to stand when it was taken.  My heart at this moment ached for those days.  Not that life was easier, but age did not seem to be as big of a factor to us then. I did not worry then that  time would somehow destroy my ability to be what I needed to be for my sons.   I also did not think about age being a threat to their own life.   Slowly I felt a tear trickle  down my cheek. I wondered  briefly what it might  feel like to not have this constant fear.  The fear that with each Birthday something heartbreaking loomed closer.  Wiping my cheek I felt almost embarrassed that I had allowed myself to cave into this admission of weakness.   But, standing there right now I just wanted to understand why I felt so stressed over a coming birthday?  I had what I treasured most in this world now with me, my sons.   I  was still strong and clearly capable to care for my sons.  But was that it?  And if quite possibly so, why was that not enough for my restless soul?  Just like magic it hit me.  There it was.  Yes, I  had made it my ambition to meet  the needs of my children.    And it was " time" now that secretly I believed  worked against me. I feared I would have to settle because age was calling to me, to my brother in law, to the family that I and my sons  relied on.  I was fearing that  somehow I would be forced to settle for less of myself, and so would my sons.   It was that fear of settling for less that surrounded me now.  I desperately did not want to feel age become my enemy too.

Its is amazing when you can face a realization of yourself. When you can acknowledge your fear, almost hold it in the palm of your hand.  I wont say I had a life changing experience in that moment.  I will still struggle with seeing myself as an old maid, I will still have to fight my own despair that Duchenne brings to my world. My fear of aging and caring for my sons is still with me.  But its what I do with this discovery " that fear is my own demon and at times holding me back", that will help me and my sons to grow to another level.