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Thursday, July 5, 2012

The heat soared to record temps of 100 degrees.  I stood on my shoreline looking out towards the small island. The lake seemed  void of any life.  Not even the ducks were out swimming now.  The water felt  almost  as warm as a drawn bath and the soft sand beneath me squished in be tween my toes.  Standing in the water felt good and somewhat cooler than the  thick July air.  I wanted desperately to enjoy some outdoor time with my sons, but the weather forecast for the next few days showed no signs of the scorching temperatures dropping.  The humid air weighed heavy, with  an almost suffocating feeling as I breathed in.

Standing next to my new dock I watched as some minnows swam past me.  We had made so many changes in the past two years it was a relief to actually feel I could sit back and enjoy some leisure time like sitting by the water. Last summers flooding had prevented us from making the necessary adaptions  to my dock that would  accommodate my sons electric wheelchairs. Now that it is was finally finished, this year we faced dangerous heat levels.  I looked over at the new wide platform extending out into the water that we had  designed for Josiah and Cody,  recalling this past spring when I invited both my sons classmates out to our home.    I felt happy that both boys were able to have had the opportunity to open up their private world to their peers.  We had worked so hard at making the dock accessible and safe for the boys.  Not only had we doubled the width but also added a  raised lip  along the sides to ensure the wheelchairs would not roll off.    The entrance to the dock was leveled to allow full accessibility and recently rod holders had been installed at the deep end of the of the dock allowing my  sons to enjoy fishing with minimal assistance.  It pleased me so much that I had been able to find away to sort of lessen the limitations that  DMD continually created.

In spite of the heat I felt a calm and peacefulness fill me, as I looked back out over the water.  In so many ways I knew we all felt more at home here.  Yes, this heat I knew would soon pass and once again the boys would enjoy fishing off the dock and trips to the beach.  It was only days ago when  from inside the house I could hear  laughter  from my niece Kayla and Josiah as they played together.  Watching from our large window that overlooked the lake, I could see Kayla, my ten year old niece assisting Josiah as he reeled in a small sunfish.  I was amazed at her ability to assist him with so much patience and love at such a young age. It was so heart warming for me to see Josiah in pure joy with his cousin.   Again, over and over she baited his hook and cast out his line.  They would both giggle  as very diligently he pulled  in the baby sunfish that would attach itself to his hook. Kayla encouraging him to do as much as possible himself reeling in  the fish, where, she would immediately be waiting and   ready to release his catch back into the lake.   Laughing and smiling together they fished.  After watching for a few minutes. I had decided to approach them with a tray of assorted snacks and drinks. I  was even more pleased to learn  that she had even taken it upon herself to apply sun screen on the bare parts of his exposed flesh.  Absolutely, we were blessed to be able to share our world with  family that gave back so willingly of themselves

Today though I was concerned, we would again be confide indoors.  I pulled my cell phone from my pocket and glanced at the time,  the boys would becoming home from their summer jobs shortly.  A county program I was so fortunate to learn about.  Both boys had been accepted into this project that employed disabled youth and young adults. The school district supplied the accessible bus that picked them up from home each morning and dropped them off each afternoon.   I  was  so happy they both liked the experience and could already see how much it did for their self esteem and social skills. Four days a week for 5 weeks during the summer, my little guys  would spend  four hours in the morning  doing various task and earn paychecks. Something I thought might  not ever have been possible.

 I walked along the shoreline enjoying my last few free minutes before I went to the front yard to wait for the bus.  In spite of the current heat, the summer seemed to be going very well for us. I was satisfied with what I was accomplishing  as a parent and so happy to see my sons thriving.  I began walking to the house.  Now out of the water I felt the intensity of the heat even more.  I was  looking forward to going  inside our cool air conditioned home, where  I knew there was plenty to keep my sons entertained.  We had gaming systems, Legos and the computer,  and we still had the rest of summer to spend outdoors.

 It was my niece  Kayla who was the answer to helping my  boys  discover fun did not have to involve electronics.  The joy she brought  into Josiah and Cody's  world moved me so deeply.  Their limitations never seemed to stop her from discovering  new ways to get them to explore  the world, outside thier comfort zone.  So here it was, with the extreme temps rising to very uncomfortable levels we would be forced to spend several days in doors . With Kayla joining us I had no doubt it would include fun.

Kayla joined us shortly after we had finished lunch. With her came her beautiful enthusiasm and nurturing care she generously offered out to her challenged cousins. It seemed only moments after her father dropped her off she was running  down the hall towards my sons Lego room to engage in play with them. Only moments later, she came back pushing Josiah, telling me they all were going to play school.  Parking him comfortably in front an activity table, that  I had made accessible for them in our large great room, she was off again, this time to help assist Cody.  Surprising us both,  Cody had taken it upon himself  to  join Kayla and Josiah.  Amazingly, Kayla and I watched, as Cody pushed  himself along with his legs while sitting in his desk chair. Purposely I have both my sons use  leather high back desk chairs on wheels  while in their Lego room.  My hopes are to encourage them as long as possible  to use any amount of muscle strength they might still maintain.     His feet squarely planted on the floor he inched his way forward. Smiling he looked up to where I stood next to Kayla telling me "see I can do it myself mom".  I felt so much admiration for him and what he was actually achieving.  "Yes you are " I said as I looked at my almost 19 year old Cody, feeling so proud of him.  I am not sure if Cody even knows how amazing what he was accomplishing was.  I was thrilled, he made it all the way across our house by using his legs and feet to propel himself backwards

I was cleaning up the lunch dishes listening to sweet sounds of laughter escape from the three of them as they played.  Curious I had to ask who was the teacher of the classroom that consisted of stuff animals collectively scattered on different chairs with name cards neatly taped to the edges. Kala immediately told me she was the teacher, Josiah chimed in" that he was the principal".  Cody remarked loudly " because Josiah is so bossy he has to be the principal."  This had become so  true in the last year.  Some how my quiet little  Josiah had out grown  his timidness and developed a talent to be bossy.  "Cody" I asked  "and what role do you play?" Smiling he said he was the janitor.  Followed by " I need a mop please".  I was delighted, I had someone to help clean the house.   Anxious, to see what he might do I arranged a swiffer wet mop for him.  The light handle drip less mop I thought might be somewhat easy for him to maneuver.  Happily he scooted around pushing his mop.  What could be better I thought,  my children at play and actually exercising too.  Moving about, using muscles and feeling proud and  I was benefiting by having my floors cleaned. Several minutes later  Cody stopped cleaning.  He had noticed a spot ton the floor that was not easily coming clean.  He asked me to get him a wipey.  I obliged bringing him the cloth.  I was not really paying much attention to his intended use  until I noticed Cody struggled momentarily trying to reach the hardwood floor with his hand.  Leaning forward he stretched out his arm, still he was to short to reach the spot that captivated him at the moment.  I watched waiting for a cue from him for me to offer assistance.   Slowly, my brilliant son dropped the cloth to the floor at his side, he then turned himself and the chair so that his feet faced the cloth.  Almost as though he was calculating his next move he lifted his foot and placed it on top of the moist towel.  Smiling he looked up to me and told me he needed to rub the spot harder.  I felt a tear form in my eye as I watched in utter amazement, slowly and steadily  his leg moved sliding his foot back forth with the fabric underneath.  This was my son, determined and confident. We all praised Cody for his success.  When I reached down after Cody had finished cleaning the soiled spot was gone, the wipe now held the dirt. Cody had indeed accomplished  the task he set out for. Loudly he let us all know that is why he is the janitor.

It is in these moments that I am reminded of the special gifts I am blessed with.    Blessed because through my children I can see beauty in something so insignificant to the outer world.  Blessed because if nothing else other than feeling  loved I have helped my sons become determined spirits, thriving and believing in themselves.  While I will still have days of despair and fear will seem to at times invade the depths of my being as I watch this disease attack my sons without mercy, when I choose to look beyond,  I will be given a glimmer of  light, that will fill me with strength to face whatever challenge may lay ahead with determination and hope. 

 


 

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