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.

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. 

 


 

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.
  

for keeps sake....

His beautiful brown eyes looked deeply into mine.  Quietly he waited for my response.  I understood the apprehension he was feeling at the moment. Quite frankly every other weekend I experience similar uneasiness as I send my sons off to their fathers for the weekend.  While I know my sons father loves them, there is most definitely concern in the quality of care he provides. Especially knowing their apprehensiveness to alert him if he has not met all their needs. In my heart I knew this night tonight was a step forward for us all.  A step I needed to make to ensure  we were all moving in the right direction.

Gently I gave  my little Josiah a squeeze as I kissed him on the forehead.  "This will be a fun guys night" I said, desperately hoping, I could help him move past his uncomfortableness before he embarked on his evening  out.  "I am not sure about this  mom.  You know how to lift me better than anyone."  His voice cracked with adolescence,  as he spoke.  My last born was slowly turning into a young man right before my eyes.     I smiled  as I looked at his  gentle face admiring his youth.  Stepping aside to allow him room to grow was not easy for me.  My own anxiety  of separation softly whispered to me.  I secretly did not want to let go of his dependence on me any more than he did.  But I knew we both had to move forward. For the past seven  years  I had been  the only consistent immediate role model for all three  of my sons.   Sharing our world with  anyone   that did not live up to my expectations just was  not  acceptable at any cost.   Now with these tender teen years in full bloom I wanted\ Josiah to enjoy more positive male bonding time.   Preferable with a man that held positive endearments toward me. Someone that respected my authority with out challenge. Most importantly some one who did not feel burdened and that would embrace the challenges of caring for a child with special needs. 

I knew he still was not totally convinced he and his brother would survive the  evening with out my presence, to supervise their care.  I on the other hand felt total comfort in the decision to have my sons enjoy an evening out, without me.  A guys night, that also still included a family member.  Their loving uncle Bill would also be  joining them for the evening.   I felt confident between these two wonderful men my boys would not only enjoy themselves but, be very safe and well cared for.  It was time Josiah  allowed another caring human in to his comfort zone with out my constant presence. I just needed to assure him.   I wanted  desperately to explore the opportunity for them to develop a new friendships.  To see them engage in outings out in the community, trusting that they could survive being in the care of someone other than me, or my sister and her husband.

Helping Josiah to advocate his needs more has been challenging for both of us.  At times even disheartening for me knowing that he can become so uncomfortable in new surroundings  he will not  ask for help when he needs it.

We talked some more about  doing things with out mom.  Me reminding him he goes  on  field trips at school with just his class and teacher.  That he and his brother  stay at home alone with our sitter who is not related.  Most importantly we talked about making new friends.   Smiling at me, he finally said he would be fine at the races without me.   But he would miss me very much.    He appeared to be  even more comfortable with the  idea, when I asked him to be the teacher and help Craig learn how to care for him and his brother Cody.  After packing my boys in the car and going over a verbal list of do and don'ts with my sons, some hugs and kisses, they  left for guys night out at the car race track. I was assured through a couple of texts and a phone call the evening was going very well. The smiles my men had when they arrived home assured me, yes everything went well, very well.

As a single parent I have now reached another milestone in the DMD world.  I have taken a  step forward in opening a door allowing  more opportunities for my sons to grow beyond my ties to them.  Most importantly I have found the courage to entrust my beautiful sons care into the hands of someone I care very deeply for.

Opening our lives to something new can often be scary and  exciting.  When I put my sons to bed that night I asked them teasing  if we should keep Craig.  Cody told me excitedly "Yes we should, because Craig is a good man".  He repeated several times to me, Craig is a good man, mom.    Josiah called me near him to whisper,  "we should keep him, but next time we should all go to the races together."  Laughing I asked him why?  " I thought you had fun with just the guys".  Giggling he said " I like seeing you and Craig together mom, its funny when you kiss.  We can keep him, but you have  the next date alone." " I like that plan." I said as I kissed them both good night.

a bump in the dark

I heard the calls to me from in between weakened coughs,  I knew I had to get to Cody fast.    I shook my head to escape the daze feeling that was beginning  to invade me.  I just had no time right now to deal with another crisis.  Beneath my fingers  I could already feel a lump under my eye brow  growing and the pain increasing.  I wanted to cry out, I hurt, but I would only frighten my sons and have even more to take care of. In the dim light I headed towards Cody, careful not to wake his brother Josiah who I could hear breathing softly across the room. At least there seemed to be no wetness coming form my head, as I gently touched the bump resembling a little bit of an eye brow.  I felt somewhat relieved that I had not broken any skin. My impact with the door might not be as bad as it was feeling.

 I helped Cody to sit up in hopes it would help him produce a working cough faster. I fumbled around at his bedside to locate his remote control to raise the head of his bed up, while I cradled his head in one arm.     He felt warm, his fever had come back and he was now even more congested.  As his bed rose I also could see he would need repositioning.  What made matters worse I could also now see a shadow appearing over the top of my eye ball.   For a second it frightened me as I thought about trying to drive Cody to the emergency room with one eye swollen shut.

I needed an ice pack fast and Cody needed me right now to help him work through his coughing spell.  Of course I could wait.  It is those moments when somewhere from with in you just know instinctively how to stay calm and manage. As if on cue Cody released some  phlegm and began to relax alittle.  He appeared to not be in any real distress for the moment, giving me seconds to quickly run  to find the ice pack I would be spending the next few hours with.

After getting him comfortably back in bed, re medicated and assuring him my head was fine, I tiptoed from his room down the hall to the guest bathroom.  I now had time to  take a glance in the  mirror at the damage.  Yes, I would undoubtedly have a black eye forming  by morning. However, night was not over, I would need to combat pain and fatigue if he should call to me again. Images of me out from a concussion flashed through my mind.  What if I was not alert enough to even help my son.  Already sleep deprived there just was not much else I could do. I had to stay close by him,  it pained me to see him struggle so hard.  I curled up in the recliner across from his bed with the ice pack over my eye,  praying for peaceful sleep for the both of us.

 I stood in the black glittery almost stiletto heels staring at my self in the full length mirror.  My legs appeared a bit longer  and more slender. Yes, the shoes my younger sister Roxanne had left behind, when she came to visit for Easter  did help me feel sexier, maybe even a bit younger.  I loved the sparkle, the shape and the height it gave me.  I smiled, admiring the way my calves appeared to have lengthened.  I followed my reflection,  stepping back as I turned slightly to catch a side glimpse.  They were deffinetely very glamorous shoes. Shoes that were me, perhaps some  20 years ago.  Shoes, that I would have danced the night away in and not given the heel height a second thought, years ago.  Shoes, that even though were my size, no longer fit in my life. Shoes that belonged in my younger sisters life style.

Carefully I stepped out of the high heels and planted my feet squarely back on the hard wood floor.  Twirling in my new dress I headed back down the hall to my bedroom.  Waiting for me in my closet were a lovely pair of sensible strappy sandals in black patent.  I slid my feet in them and stepped back out in to the hall to critique my  image.  My freshly painted pink  toenails matched the hot pink trim in my dress perfectly. While the heals were some what lower, I was very  pleased.  My feet I decided looked pretty with a sleek sexy bareness about them. Without anymore hesitation I knew my outfit was now complete and I was ready for the prom dance I had been invited to with my two younger sons the coming weekend.

My sister Marie and I had busily spent the early part of the week shortening our formal gowns to just above the knee.  Having been unable to find dresses that created the elegance we wanted in shorter lengths we opted to design our own versions.  By altering the hems lines of some off the rack prom dresses we had  found we were able to create gowns that allowed us the capability to move freely.  Accompanying my sons Cody and Josiah to prom was such an honor, we both looked forward too.  Even though this night was a formal affair we would still have to be caretakers and  lift and maneuver my sons through out the evening. Dressing for the occasion had such a deep  meaning to us.

I smiled to myself  recalling last years Shriners Prom.  We had just gotten to the dance, I was helping to get Cody out of my van and stepped on the hem of my dress, while adjusting him in his chair.  Only able to find one  safety pin, I tried desperately to create a neat gathering of fabric in the front of my ruby red gown and spent the rest of night trying to keep from stressing  the satin material.   By the end of the night I had ripped my dress down in a several places. I had decided  then and there on that night, I would never again  choose to wear a gown to the floor. Keeping in mind however to short poses a problem with lifting too. Strapless dresses are also not on my to wear list when I am in my caretaker mode.  I am some how unable to lift bodies and keep my top in place. A lesson also learnt the hard way.

With my  sons almost magically  coordinated  with our backless gowns we seem to be ready.   Using the  left over fabric from shortening our dresses  Marie  created bow ties and a cumberbun for Josiah  to match.  I will have to admit however I did have to really talk my both my sons into agreeing to wear the pink bow ties that  had been designed for them.  Now with their suits pressed we are all looking so forward to this wonderful evening.

While I anxiously await  this special evening with my sons I cannot help but think about  changes.  Not only changes age has made on me but changes the life I am called to live requires of me.  My life with Duchenne  at times demands of me to  surrender and adapt to changes.  Changes that I am not always eager to embrace or accept. The effect that this disease has had on my life is so great that even my fashion style has been effected.  I will always admire the glittery, and delicate clothing I once could adorn freely.  It will always be in me to secretly want to bare my shoulders or cover myself in sequence.  The shoes I buy now will have a somewhat lower modest heel to help me  stay balanced when  lifting more than my weight.  On occasion I hope to still attend events that will allow me the opportunity to  borrow a few accessories from  my younger sisters more youthful wardrobe.  I will however let her keep the stilettos on her feet and accept  that I must be a bit more grounded and at times even more modest to meet the tender needs of my sons.

my image

Josiah sat next to me brushing his teeth. While  I brushed my hair looking in  his large bathroom mirror,  I glanced over at him.  I was  so happy and proud that  he could still manage this task by himself. Reaching over towards him I placed a free standing counter mirror in front of him, just in case he wanted to see for himself the beautiful job he was doing. Josiah kept busy with his grooming and never glanced over at the mirror.   Smiling at him I suggested he see how gleaming white his teeth looked.  He just smiled and continued with his brushing.  However something clicked in me at that precise moment.  It was almost as though I heard a soft whisper in my ear.  A voice, telling me something was very wrong here.  Something, that he had been  hiding  inside would now make my heart ache for him.

I knelt down next to Josiah to actually see what he was capable of seeing in the mirror at his level. The large wooden framed mirror above his bathroom vanity just grazed the top of his head with his reflection.  It  was not to surprising to me  that sitting in his desk chair the height was not exactly perfect for him, to admire his beauty.  We had designed his sink counter top to fit the height of his wheelchair.  Now with  the counter mirror in front of him clearly he was well with in his range of viewing.  Tilting it some more  toward him, I encouraged Josiah to take a peek. Having just finished  brushing his teeth, he wiped his face with his head still  turned away.  Somewhat giggling but very anxious to just be done he tried to scoot out of the room.  "Josiah" I cooed "you have to see how beautiful your smile is".  The closer I moved the mirror the more he angled his head to avoid  his reflection.   Gently I reached out to raise his chin.  Slowly his smile faded.  As he softly spoke  my eyes watered.  His beautiful little face looked up into mine with tears and almost whispering he told me he looked ugly.

Its moments like this that break my heart.  I did not think a day had ever passed by  where I had not praised my boys for their beauty and  abilities. I had seen Josiah look at photos of himself.  Never ever did I  notice  him to shy away from being photographed.  Kneeling at his side  I looked  into the  very sad eyes of my youngest, absorbing the pain he was sharing with me.  How could this have happened?  Holding him tightly in my arms, questions  raced through my mind. What caused my beautiful boy to feel so bad that he could not look at himself in the mirror?  Why did  I  not notice this sooner?  Where was I when this happened?  Most importantly what evil had made my child feel so badly?

We have all heard stories about bullying.  Stories that have often brought us to tears because of the tragic, damaging harm it can cause. Hurting because as caring human beings it pained us to see others suffer. I know  many of us have even been victims ourselves and can deeply understand  this pain.  I wanted  to some how free my child from this hurt.  Erase this horrible belief that he had accepted into reality.

 Slowly and and with teary eyes  Josiah confided in me the secret pain he had been hiding.  He was  well aware of the stares in public he receives. That was one hardship he dealt with, but recently  he had also been the target of insults from some females at school.  Ugly, was the word that seemed to have hurt  him the most.  The recent progression of his muscle disease has caused changes in his physical appearance, only enforcing his belief in the disastrous meaning of the ugly word.  Very aware of the  effects  his limited ability causes, he longed to be like any other teenager, however  in reality as harsh as it sounds, invitations are almost nonexistence and friends are not exactly  lining up at the door to hang out with him.

 I held him in my arms  while he talked, fighting back my own rage that someone had caused my child so much pain.  Together we both made it through that long tearful  day.  I manged to get Josiah to glance at himself  in the mirror later that afternoon.  It appeared his contagious  smile had  returned.   Deep inside I  felt so much sorrow that my son had to experience this sort of pain in addition to his daily suffering.  He would  have to continually accept the changes Duchenne will cause and  would undoubtedly experience  yet more low moments. I desperately wanted to cling to  hope that he will see all the beauty he truly posses one day soon and love  what he sees.  As sad as it is though no matter how hard I tried to help him he would  have to continue to share the world with ignorant unkind humans, something I could no more control than the weather. But,  I will not give up on trying to change the effects these unkind words have on him.  I am determined to keep all those that see him as the remarkable young man that he is close, very close at times.  

 Talking to Josiah's school and addressing the issue  has opened many eyes and is provoking more awareness.   While the episodes appear to have been isolated they are still being addressed.  As a realist I do not believe for a second it will not happen again.   I still will have concerns that Josiah  somehow feels he has to hide things, even from me.  Not only do bullied children often feel isolated but fear contributes to them hiding their pain. A child with a terminal disease often will try to hide anything outside thier disease for fear of feeling even more isolated.  Just being aware as parents that more may be going on, is all we can do at times.

I know I can not protect Josiah from everyone and he will over hear things that may make him feel sad from time to time.  The harsh reality of the world is, we as humans can be cruel even with out intending to be aka; sarcasm.

  It pleases me though that I can see true joy and happiness with in my sons.    I am so proud that all three of my sons do feel very loved and that I have managed to make that very apparent. Outside in the world beyond, the  reality is- as parents, there will be moments when we  will have to be a  warrior for our children.  That can be very tough and disheartening at times.   Quite frankly in all honesty it  causes me to deal with my own disgust towards society and acceptance.  When I reentered into the dating world seven years ago, while my appearance may have placed me on a list to be desired the fact that I had 2 sons with special needs set me very much aside.   Thankfully my happiness has never relied on the fate of falling in love.  But as humans we all want to belong and have a place in this world  that gives us that sense of self worth, most importantly though we need to be loved.  I know my son is not alone and my heart goes out to all of us who have felt less  at times.

  As I have grown stronger on my journey  I know " I would rather shine alone than be lost in the crowd" and as long as I am here" I will help my sons to always shine".