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Sunday, July 8, 2012

Though you may mean well,  please remember, I am only human.  I am a person just  like you.  I bleed when I am cut.  I cry when I hurt. I become angry when provoked. Smile when I am happy.  Like you, I also can be over come by fear when I feel helpless.  Like you, I feel joy and sadness. Like you, I seek love and love back.

I thank you for caring, and taking  time to listen.  Bless you for making  the time to read my words.  I understand the  sentiments  that you offer from the bible are meant to comfort me,  to give me hope and  inspiration when I feel devastation. It is not God I find fault with,  or his love I doubt. It is not my lack of faith that has me lost and in pain.

Just like you, I praise God for all his blessings.  Like you, I rely on hope to get me through each day. But, also like you, I am human and struggle with fear, loss and abandonment from this world.  Like you, I strive for acceptance and search for fulfillment.  Like you, I seek peace  and joy.  Like you I pray.   

Although you want to offer me support, quotes from the bible will  not make my sons disease go away.  Telling me to have hope, will not stop their disease from progressing.   Encouraging me to be strong, will not lessen my heartache as I watch them struggle daily with muscle loss.

 I ask you to please allow me the dignity to show my sorrow when my heart is breaking.  Give me  time to work through my frustration and heartache.  Be patient, while I try to heal my wounds.  
Be be the friend I can turn to in my time of need. Be the hand that holds mine when I feel alone.  Be the arms that embrace me when I need comfort.  Loan  me your heart when mine is breaking.  Help me to see light, when darkness falls upon me.  Give me understanding without judgement, forgive me of my shortcomings with out shame.  See me for all the goodness I posses.

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. 



Tuesday, July 3, 2012

Slowly I backed  my van  toward the single  cement step leading up to my front door.  This appeared  to be the easiest way for me to load Josiah and Cody's motorized wheelchairs into the rear end of my navy blue Dodge Caravan.  I knew I would still have to use our clunky awkward but dependable, steal portable suitcase ramp to drive  the chairs across on entry.   However, I felt somewhat  relaxed with the  low incline- from going  step to van, and bridging with the ramp. A welcome relief for  my fear, that should I slip the chairs would  not roll back and trap me, as  it had happened in  the past. Glancing into the van I paused momentarily scanning the space available for me to haul the cumbersome equipment we now needed.  I peered back to the  front door where Josiah's chair waited for me.  I again, sized the chair up  form side to side. Yes,  I knew what I had to do, and felt determined.  After all  I had been tackling loading equipment by myself for many years.   However, as my boys have grown, so has their needs and size of wheelchairs.  Unhappy with my limited choices, today I had decided on a different approach.

 I paused thinking  about the weeks earlier  disappointments, my purchasing a  gate trailer and hitch that I wanted  to use to  haul one wheelchair outside the van, allowing me more space inside to seat passengers while only having to load  one chair in the vehicle.   I had  hoped my new scooter/wheelchair carrier would aide in my transporting the boys and their motorized equipment.  I envisioned this would add  new convenience into our limited world,  giving me some major ease with the transportation  choices for my sons.  Sadly my latest attempt to find an affordable new spacious approach  failed.  Miserably I  added the defeat to an already growing list for the week.  Now not only did I  have to recover from  a several thousand dollar wage loss but I also owned  very expensive beach chairs that were not owning up to its claim of ease.   This  new large metal rack now broke what had already weakened my spirit.   So as it were I felt obstacles and stumbling blocks surround me.  Leaving me amidst all my  errors and set backs, left only to find new ways to set forth on a path to  rise above  my present demise. 

  Propping open my front door,  I momentarily recalled how on previous trips, I had always resorted to lowering one of the  stow and go middle passenger seats into its storage compartment in the vans floor. Giving me  the very much needed space to load our 2 electric chairs,  a ramp along with what ever else we would need for our adventure.  Unfortunately though it never left us much room  to allow us to have an adult size passenger ride along.  The only area left to spare was a small split section of the very rear stow and go seat, with scarcely  enough leg and foot space for a child, or small accommodating adult, such as my self.    Desperately to day, the day of my niece Vanessa's wedding reception,  I wanted to keep the left mid passenger seat in tact.

 I had spent time researching and planning for this day, to find a way that  allowed  me the comfort to be seated with out having to crawl to the rear of my van, in my dress and heels.  I wanted  to have room  and just this once be honored with  the pleasure of an escort accompany us for our special night.  My male companion  for the evening was Craig.  A very close friend whom I had been seeing and recently begun  joining my boys and I on occasion to  events.  Standing at six foot three with very broad shoulders, it was very apparent, there would be no possible way to seat him in the rear, surrounded by equipment.  With Cody and Josiah occupying their tourney seats there would be no other  seat available to accommodate his size.  He  would have  to sit in the drivers seat.  I knew I had to try and find  another way to load my cargo, or resort to crawling in the back, with gown and heels.

 I thought about the tears I had cried earlier in the week from  letting my hope build, and  be left with yet another let down. Tears that grew out of fear from me failing at my attempt to become more independent with my sons and  their ever increasing needs.  Most importantly, tears because in so many ways this only increased the isolation and imprisonment  I see ahead for them -for me -for us.  Sadly, I just did not even begin to know where to turn  too, to share my sorrow with out feeling I was being seen as a drama queen,  or be showered with useless advice.   I felt bad, and just wanted  to have some where or someone to vent.  With the reality that staff, family and friends are not always available, I felt an even more urgency to address the situation on my own, to keep from hearing again,  the before mention label-Drama queen. Somehow I found the words still stung at me, while I scanned the door frame size one last time to my house. An  uneasiness stirred in me, as I thought about what I desired most. Was it physical support, or just some real heartfelt emotional support,  that would let me keep my dignity and not be judged.   I  had read a posting on Face book a few days ago where a friend had posted she was having a bad day.  She was so thankful and  delighted when a close friend appeared at her door unannounced with a bottle of  wine.  I imagined as I read the posting, how special and loved she must have felt.  I was delighted for her- but found myself wishing  I had  that in my life right now. Just once, I wanted  affection without having to ask for it. 

 It wasn't  the money and time spent researching that left me so upset, it wasn't even the  fact that I now owned  items that were not living up to my expectations or needs they were unable to meet and failed. But, solely  the acceptance  that once again DMD had appeared to have control  over another aspect of my world -the world that my two sons and I live in.  So, here I was recovering from a  week of feeling like I failed in many choices lately, and at a loss, to find away to provide more accessibility for my sons.    How many set backs can one week bring? I wondered, as I began to set up the rigid ramp.  With no tears left, and a bit angered at myself for falling victim to self pity, I now felt determined  to tackle my current dilemma.  So far, no  answer to our situation had been rendered that would improve my being faced with unloading these chairs at a very steep incline by myself, at some point, and most likely often.  I shifted the heavy metal ramp and thought about  the set back the current  situation  produced.   Reality stung at me,   single parenting slapping me in the face.  Faced with- short staff and short funds I had to be everything and find ways to do it all.  This was our life like it or  not, I carried the load to our survival, our thriving.

  Letting my thoughts carry me away,  I wondered what was it even like to be a  parent,  and  go somewhere with out having to put  so much thought,  planning and preparation into it.   Unfortunately needs and emergencies arise often at the most inopportune times.  Could I really have my sons transportation exist  at the mercy of others?  Hope that help would be available when I needed.  Would that be acceptable for the bazillion of other parents I knew?   Would they really accept living that way, of course not.  I tried to imagine if  I personally  knew anyone, who really understood the stress and fear, of being in that situation.  A situation, I knew to well.  A problem I wanted to avoid ever happening again.  

I began to disassemble as many removable parts as possible on both chairs.  The backs with headrest and then foot rest. Carefully, with Josiah's chair on a very low speed I slowly backed it in the van.  After several attempts I had it backed as close as possible to the passenger seat on the  left side of the van.  Cody's chair was next.  All I could do was try, at the very worst I would be sandwiched in between the chairs for the ride, if my idea failed. With extreme caution and persistence, some clanking  of wheels colliding from one chair to the next, it appeared I had made a successful fit, barely but it worked.  I was successful.  My first thought was take that DMD.

Half amazed that by myself, I had actually attempted something that no else that had offered me help had thought of.   I surveyed my solution. Empowered I stepped inside the van to take a  different look, just  to ensure I had not forgot something.  Yes, I had managed to fit it all.  Even though it required removing the chairs of some hardware,  it all fit.  I finished placing  the ramp and the other parts I had stripped  from the chairs  in my van.  I smiled as I heard the  rear gate door close with out so much as a ting. I was done and now had  time to spend getting myself ready.

The wedding reception was wonderful.  My sons enjoyed themselves and their freedom to roam. I found an inner peace with in myself that night.  I felt joy that I was able to be more when I had too, once again.
I did manage to impress Craig and my brother-in law Bill some, with my talent to fit the wheelchairs side by side on my own, something, neither  had  thought of.  However, I know in reality it only helped both feel assured, I had moved on and as usual made things workout. I, on the other hand had  assured myself how very important  every step I take towards my sons care must be.  Most importantly, there is no end to learning on this journey and the level of commitment  I need.  

  I may not ever know the comfort that comes with having someone to share your innermost fears and pain with.   I do not  ever expect anyone outside the DMD community to  begin to understand the  magnitude of emotions we struggle with daily, or the the strength it takes as  parents of children who are born with an expiration date.  Those are things I have no more control over than the progressing muscle loss my sons continue to endure. I do know, I at times need to be so much more, and hope for so much more.  From time to time I will fail, and the ones that are around me offering support may fail.  I can move past all that and grow.  With dignity and pride, I will pull myself up to continue to discover the things I am capable of, through my perseverance and unconditional love for my sons.  With out hesitation, I can tell you I am a DMD mother first and  that is my whole world, where ever I go and what ever I am doing.