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Sunday, December 30, 2012

Celebrating Joy

I love Christmas time.  Actually, I love all holidays where my family gathers together. I am drawn into the joy of wanting to celebrate  the ritual -of thanking each other for the time we share together.  Deepening the bonds that hold us tightly connected in our hearts.  Sharing with my loved ones memories we have made together, praising  God for all he has given us. Hoping to to share in spreading the peace and joy that was meant for us all.

 So it is Christmas that offers me the most opportunity to rejoice.  Yet it is this same magical season that finds me desperately  needing and wanting. Yearning to rejoice in something, anything, I have gained, but tormented by remembering what I have lost.  Delighted, I have family that shares, with love and admiration for my sons.  Secretly still though, hiding my sorrow.  So with much work I  put to practice mastering the skill of feeling JOY IN SORROW.   It is Christmas, and I rejoice that I am so blessed to have my sons with me. Happiness flooding me, because, also once again my sisters and their families  join us in celebrating.  Pleased beyond words, that I am able to be surrounded with love and share all this with my sons.  But some what  Saddened, that a Christmas lost, has even entered my mind.  Alone in thought,  facing realistic realization of what the future holds, in the darkest corners of my mind.  Also feeling somewhat angry that this is a fact in my world and in my sons world. Feeling also that I must state-Absolutely not needing  to hear some unsympathetic remark that there is hope, from a fragment of a human being.

  So I watch as Cody struggles to lift his fork to his mouth while we feast and  also fight to hide my tears as Josiah is in need of assistance to help him rip off the wrapping paper from his gifts. My eyes follow my niece and nephew as they move so freely about passing out the gifts.  Rejoicing they are here with us, but remembering  a Christmas not to long ago, when it was my own child under the tree pulling out a present to pass around.  Wanting it to be my sons joining my nieces and nephews as they run to go out side and play on the icy lake. Feeling sad that when  my beautiful niece Kayla asked if Josiah and Cody could join them I had to decline, because I was limited in my own physical capabilities. I simply  could not safely maneuver them down the icy hill leading to the lake let alone help them through the snow.   So I embrace the joy I feel as my sons  accept playing with Legos.

I watch in awe of the glory that surrounds me.  Love filling me as my nephew Blake kisses my sons, his cousins good night on the forehead then, makes time to cuddle  by me.  Holding captive the warm feeling I have as out of town friends take  time to spend with us. Graciously, accepting whatever accommodations I can give them, just happy to be able spend the night.  Embracing all the merriment brought to my home, by  loving family and friends. Making new memories of another Christmas

 Hoping that the joy I see in  my sisters eyes, as they celebrate with their husbands, might some day be in mine. Shyly, watching as they toast Christmas cheer with a kiss.  Wanting desperately, to know that kind of love they share together.  Yes, it is Christmas, soon to be a New Year and I celebrate. For a split moment I wonder how I appear to them.   Holding my sons in my arms, laughing, smiling, and hoping that  I am hiding the fear, the sorrow, and  the loss I feel. Wishing that the emotions pulling at me now would vanish, or somehow for just a mere second, leave me to feel anything other than sorrow and joy at the same time- for just once.  We celebrate a joyous Holy Holiday. Me beaming when we  attend Christmas eve mass where,  My eldest son  plays his violin.  So proud, as I sit,  alone, amongst my  sisters and their Husbands in our pew. Wishing the church was remotely accessible, to accommodate Cody and Josiah. Thinking back to a time when I too had my spouse next to me, along with my two younger children, as  Zach played for the service.  This year  feeling thrilled, when my overnight guests teenage son agreed to adorn my Santa suit and make a surprise appearance outside our back door, to give my boys more Christmas excitement.

Somehow just now I realize,  not from  venting, but by my writing, sharing from my heart,  I begin to see- it doesn't matter to me anymore how or why these feelings are coming to me-Just that I am blessed to have them and share them.  What ever JOY I can find, I will take it.  Run with it. Though  I may shed tears to find it-I embrace it just the same.


 As only God can do, the  timing (his timing) was perfect- I walked in on  Cody today, scooting down the hallway in his desk chair heading to the family room from his bedroom across the house.  He looked up at me and said "let me do it myself mom." I stepped back and watched him scoot across our rambler, tears of joy running down my face.   ( yes joy with sorrow still)  But so intended for me.  Joy that I shared with Cody.  I in my human state of mind of course wished I had someone else to share that instant of a moment with other than just  Cody.  But I am learning- this was something  God intended for me, just me. Perhaps because I too in some obscure way am special.       

It is the Christmas season and  New year now approaches.  My thoughts and prayers are with so many of my DMD friends that are also struggling at this time with something.  I pray that you all will be surrounded by love and joy,  And that you will always find strength especially when you need it most.  HAPPY NEW YEAR!!!   

Saturday, December 1, 2012

There was not  a trace of snow to be found, as I scanned the courtyard.  No matter, I thought to myself, as we watched  a sleigh with two reindeer attached pull up in front of us. Eagerly, my two younger sons Josiah and Cody waited at my sides. Amazingly along the sides of the sleds runners, were wheels.  I smiled as I explained to Josiah, that this was exactly how Santa's sleigh must be, so he could visit warmer climates that did not ever get snow.   Excited we approached the sled that harnessed Donner and Blitzen.  Cheerfully we were informed that the reindeer were a bit anxious themselves and on a ride earlier, had attempted to speed up there pace.  Warning us we could feel a bit of a jerk, should they decide to gain speed again.  However,  they would do their best to keep the sled grounded and not let us take off in flight.  Josiah's beautiful brown eyes widened as he smiled-  the mere thought of this undoubtedly sounded utterly fantastic. Flying through the air just seemed to be in their blood-we joked together. 

I sized the sleigh up along with my  brother in-law Bill,  who had  graciously agreed to accompany us today, along with his wife, my sister Marie. We are so blessed, with both of them always lovingly and eager to assist us, whenever possible. Lifting my sons high enough to place them inside the sleigh was our only posing problem.  As if on Que, and not letting us fret for a moment, two men approached us offering to help load both of my sons.  With in seconds it seemed we were all comfortably seated covered with a blanket and off on our journey.

Our ride was wonderful, and it was the first time my sons had ever been in a real open winter sleigh. Having reindeer pull it  made our experience even more festive, with  the Holiday spirit seeming to be all around us.  It did not matter to us nor the reindeer that there  was no snow to be found anywhere. Relaxing during the ride I had decided it was a most pleasant joyous way to share with my sons the beginning of the  25 days of Christmas.
 
It is this magical season, where joyous events can occur and  often brings out the warmest welcomes, filling us with the wonder and awe of the season.  At the end of the ride as I lifted my Josiah in my arms-(while still in the  open sleigh)- to lower  him into the waiting arms of a  kind stranger,  that instantly filled my heart with the magic of the season.  As I stood holding Josiah, like Mary may have held Jesus on that first night, and welcomed  strangers that came to adore her infant son,  I could not help but feel joy, that this was all made special for my sons.  This stranger carefully listened to my instructions, and with waiting arms embraced my youngest.  I watched as he carefully placed Josiah back in his waiting wheelchair.  Then swiftly, he turned around to offer me his hand to help assist me in getting down.

It is not always easy for me to ask for help on this arduous journey with my sons.  However, I try to  not  let my pride prevent me from accepting a helping hand when ever offered.  For I know, often I am giving back  by allowing others to experience the joy in helping and giving of themselves.  In this Christmas season as I reflect on the good Blessings we have received by the generosity of so many, I give thanks to our Lord for allowing me to see and feel Joy in Sorrow.

Sunday, October 7, 2012

I found myself tonight looking for soft music to help set the mood to help me write.  While I wanted something inspiring  I also wanted it to be soothing. After playing several of my favorite popular pop hits -and still no flow of thought,  I decided to try a more spiritual approach.  My search ended when I came a across Phillip Phillips "Home".  How fitting I thought, given the weekends course of events.

I listened to his beautiful strong voice and moving lyrics.  He definitely was one of my favorite male  recording artist.  His words reached inside of me giving me much more than I imagined to think about.

 I reminisced  momentarily about dinner out tonight with my youngest son Josiah.  The uneasiness he felt from a near by table as they occasionally looked at him and the approach I decided to take to help him overcome his uncomfortableness.  I had thought about rearranging our seats at the table.  Putting his back to the situation would most certainly ease any apprehension he felt and allow him to escape stares.  But this was not how I wanted to teach my son to deal with situations that left us feeling uneasy.   Like the lyrics in the song I listened to tonight I wanted Josiah to not let fear control him.  I wanted him to feel every where he went he was welcomed and accepted and NEVER ALONE. So turning to the table behind me  I gave a fearless  hello at the eyes that had glanced in our direction. 

I spent time later in the evening discussing with Josiah that  the looks he might receive are not meant to make him feel self conscience.  More often than not it is empathy if anything at all. Most importantly I wanted him to know he is loved by so many.  I also wanted to help  him  feel confident and proud of who he was.  We talked about how  many of us have  special things about our appearances that might not be labeled as beautiful by the fashion world , such as; being over weight, crooked teeth, thinning hair or wrinkles around the eyes to name a few. But each and everyone of us are created by God and are beautiful.  In our own unique special way we are beautifully different-just like snow flakes no two exactly the same.

I tucked Josiah in tonight, before we said our good nights, I snuggled in next to him and we listened to  Phillip Phillips sing "Home" on youtube.  When the song was over Josiah told me he was not going to let the demons make him afraid. That was a wonderful idea I told him, and it was exactly what I had hoped he would  say.

We might not always have nights that work out so nicely.  One of the females from the table behind me gave Josiah a cupcake from their party tray.  Josiah smiled at her for the kind gesture and accepted her treat.  We  enjoyed our dinner together  and I felt happy  that the experience was a good one for us both.  I felt relieved that Josiah was not as troubled by  the looks he felt upon him tonight.   But after Josiah fell asleep I was left with so much more to think about.

Cody my middle son went to his homecoming dance this year. This was his very first dance and although I was  excited and proud of him, I felt fear.  Fear because his disease posed another problem socially.  Cody bravely set out to attend this dance with out a group of friends or classmate to hang with.  He and his para from school arranged to meet at the dance. Cody assured me he enjoyed his time with Julie -his para, who graciously gave up her time to spend an evening hanging out with my teenage son, however he admitted the night left him feeling a bit  left out.  He did not dance with friends or have any  interaction with his classmates.  He told me he received a few smiles but mostly looks.  Looks that left him a little self conscious.  What Cody could not tell me, the photos taken on the camera I sent with him showed me.  His pictures were all of him alone.

 Yes, I could hire Cody a date easily. I could even keep that  secret from him.  I can not  however make someone be his friend and I also can not shield him from the harsh reality of the world. I can let him hold on to me as long as possible but like all teenagers he wants to soar and travel down unfamiliar roads.  This new level he has reached I embrace, as much as it scares me, I rejoice that Cody faced his demon and went to the dance alone,  confident and proud.

 We live in times that are truly trying to address bullying and social acceptance on many levels.  I have taken several steps in helping to approach the obstacles Codys physical and mental impairments present.  At his last IEP meeting this past week I enlightened his school staff on the social aspect Cody was challenged with recently.  We discussed several ways to try to attempt to help Cody feel a bit more  accepted amongst his peers. Unfortunately the  answer is not a simple one, not for my son or any teenager faced with the longing to belong.  So it brings me to  think more about  the demons that feel all of us with fear, as in  Phillips song.

My boys are home tonight, tucked in bed safely, knowing they are loved and have  a place they call home.  I say good night with one thought- just imagine, how it would feel if we never had to feel alone and if the world felt like our home where ever we went. So I ask when you see that someone that might be different from you in some obvious way, smile at them even offer a hello, you might just be the ONE friendly face  they see.   
  

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.    

Tuesday, August 21, 2012

The words stung at me as if a wasp had just left a bite.  I felt heat rush to my face as my emotions turned to anger.  I had to leave before things were said  that we might regret later.  Slowly I reached for my purse and began to walk toward the door.  I glanced over to wear he still sat, blankly looking in my direction.  We had been here before.  Challenging each other verbally, had we learnt nothing from sharing our honesty. I paused for a moment wanting to turn back to his direction, hoping somehow magically we could change the moment.  Sadly there was just nothing I could do, with out surrendering my dignity.    I opened the door half hoping that I would feel  his presence behind me. Wanting desperately to be reminded of the warmth we once shared.   The night air chilled me as I stepped out into it.  I knew this was what I had to do.  Taking a deep breath I opened my car door, and climbed in.  He was no where in sight , and  for a split second I pondered the thought of running back inside.  I imagined myself falling  into his strong arms. Could walking  away be this easy, I thought to myself.  For the both of us, it just seemed to be to easy. Could we really have came this far only to throw it all away?

My drive home left me alone with my thoughts.  I wondered why I did not even have a single tear. I felt nothing, a feeling that had become very familiar to me.  It seemed if I showed emotion I was being dramatic, and if I showed nothing I was cold.  It just seemed clear to me that whatever I was, it was just  not the right thing for him. 

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.
  

Saturday, June 16, 2012

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.

Wednesday, May 2, 2012

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.

Thursday, April 12, 2012

 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.

Sunday, March 25, 2012

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".

Sunday, February 5, 2012

Do I believe

At first I felt nothing.  Listening to him I felt numb, as though all life had just been drained from me. I stood frozen unable to move or think.  I watched as the Doctors lips moved while he spoke to me.  His tired red eyes teared as he looked into mine. Deep inside me, I already somehow knew what he was telling me.  But now listening to him it became my heartbreaking reality.  

For some reason memories of sitting  in my prenatal classes amongst all the other happy anxious parents to be- flashed through my mind.  Maybe, it was because for the first time in my life I  finally felt like I had a purpose, a real meaning to be here, in this world.  A time in my life when I was in love and over joyed to be living my dream. I was with child and cherishing how alive it made me feel.   I drifted  back to a place in my life when  I was surrounded by other  females, who also embraced this new adventure.  Other young women, excited, scared, and  in love with the life that grew inside of them. Together we sat  in the arms of our partners, expressing our  fears, anticipation and the expected joy that was ahead.  Briefly I returned to  a time when I did not feel betrayed by faith and was not tormented by death.  

The present interrupted me abruptly.  Very softly spoken I heard the words "I am sorry".  A single tear trickled down my cheek.  In an instant my world changed.  At that precise moment all that I had hoped and dared to dream left me.  I stood motionless with my heart shattered,  knowing all to well this pain I was feeling right now,  was only the beginning of my new journey. 

Holding my beloved child in my arms, slowly, I unleashed my sorrow.  As tears silently streamed down my face I felt pieces of me die.  Desperately, I wanted to feel the same joy I felt when he was born.  His beauty captivated me as I looked down at this perfect little baby that I held.  " I am sorry" echoed in my head.  All around me I felt our world crashing and there was nothing I could do to stop it.  I was sorry too.  Sorry, that after all these years the medical world still had no treatment or cure for Duchenne.  Sorry that more boys would still have to endure all the pain living with Duchenne caused. Sorry, that  we would have to  continue to cling to hope for a cure to get through each day.  Most importantly, sorry that my beautiful baby would be sentenced to a life of living with a devastating disease, that shows no mercy in its unrelenting attack on the human body. Sorry that my son would slowly suffer from a disease that would eventually take his life far to soon, only after imprisoning him for years.

Often I will see or read something that triggers a memory from an event of my past.  Awakening emotions neatly  buried inside,  quietly resurfacing. In those moments I am left with explosions of feelings and stirring memories.  Experiences that scream to be unleashed with a purpose to be shared in some enlightning way.    I read a posting today on FaceBook regarding the question,   "Who believes  in miracles?"  Something deep inside me stirred.   While reading some of the responses I came across one response that said,  " No I do not believe in miracles, every thing is cause and effect".  I stared at the word "no" for awhile.  Only one  response  from a DMD mother had answered differently to that question.
   
It was over 20 some years ago when Duchenne personally reappeared into my world.  
Those feelings when my son was first diagnosed  controlled me for months. At times almost making getting out of bed impossible.  Somehow though I did.  I found the courage and strength to accept every challenge that laid ahead of us.  But if you had asked me in those first few months if I BELIEVED IN MIRACLES- my answer would have been NO.  It would have been an answer coming from heartache and fear.  It would have came from a mother who felt despair consume her after being  just told her son had an expiration date.  That her beautiful child was diagnosed with a terminal disease and there was no treatment or cure. 

Today I am a single mother of three sons.  most of you know my two youngest sons both suffer from an unrelenting fatal disease. They also struggle with a cognitive delay.  The past 12 years of raising them alone has been anything but miraculous.  We have struggled through some very difficult times that personally has only made me stronger in my perseverance to see my sons and I succeed.  Do I believe in miracles the answer is, yes.  Do I think I have personally experienced a miracle the answer is no, but I will admittedly share I have felt the touch of a higher power at times.

What I have experienced  is that even with the devastating effect Duchenne has had  on my sons and I  there have been moments when I  have also felt the presence of something more powerful with us.     I have seen my sons  loose the ability to walk, to raise their arms above their heads.  I have watched them completely become dependent on me for things most of us take for granted, like scratching the top of their nose, or rolling over in bed.  But I  have also watched them triumph through loss.

So yes,  I believe miracles happen.  But I am not willing to sell it short. It is not miraculous that I have raised three sons by my self.  That I have been responsible in providing for all the care in meeting  my two younger sons special needs, while helping to  put my eldest son through college as a single parent. That is the effect of  hard work and  personal sacrifice.  While I am thankful my sons are still with me and we live comfortably, it is the effect of my unconditional love and commitment to care fort them and part of Gods plan to have my sons still with me.  But if Cody or Josiah rose out of their wheelchair tomorrow and stood unsupported, yes, that would absolutely be miraculous. If love walked through the door and swept me off my feet today that might just qualify as  miraculous  too.

The joy we feel when we first hold our new born child can almost be described as a miraculous feeling.  Some times some of us will refer to finding the one with whom we want to spend the rest of our life with as miraculous.  In any event the belief in miracles is not meant to challenge us.   Believing in miracles  helps us to  survive the negative effects of this world  and that in itself is a blessing.

 I do believe where there is love great things can happen.  I believe Angels exist and walk amongst us.  I feel prayer is powerful to the heart and mind and that  hope and faith is essential to surviving tragedy.  I also believe that there is a great plan and we are all a very important part of Gods design.    
The thought of something miraculous gives us hope and in times of despair  for some of us that might be all we have to hold onto in this world.

             


   


Friday, January 13, 2012

I am not sure how long we sat there together. Me trapped underneath my eighteen year old Cody. His immobile body laid across my hips and chest. The more I squirmed the more I could feel our bodies sink in to the crater that was forming beneath us. Gently I tried to roll Cody to his side, the effort seemed almost useless. He was completely unable to move his legs with out help. Help, well that was a thought. Help from where and what. Across the room in his desk chair sat my youngest son Josiah, calling to us, asking if we were okay. A victim of Duchenne also. Josiah, unable to offer nothing more than his verbal support. We appeared fine, just momentarily trapped. Oh, I just wanted one day with out hurdles to jump over. One day that did not leave me feeling helpless or my son feeling imprisoned.

I thought briefly about the up coming strong man power/lift show we planned on seeing in a day. Clearly the human body could be trained to do amazing things. Training was not something I had but, strength and courage I knew about. Today I was going to be called to perform a little more than the usual, right now home with my sons. It was going to be up to me to get us out of this position. I knew though the hard part was still to come. I would eventually get up but how would I get Cody up. The image of my younger sister trapped on the toilet seat with Cody on her lap flashed through my mind. It was an awkward moment that could not be replayed if we tried. While visiting her over Thanksgiving she had assisted in helping me with Cody in the bathroom. Somehow she managed to back into the bathroom with Cody in her arms, and landed on the seat holding him. We laughed so hard, they had to sit there momentarily until we regained our composure, so I could lift him off her. Yes, this now was one of those moments.

I ran my fingers through Cody's hair, and gave him a hug. "I am going to have to slide from underneath you" I told him. Preparing him for some more shifting of his body. I was happy he only weighed 140 pounds, easily this could have been harder. Cody attempted some more wiggling. At the same time I pushed with my feet freeing my slender hips out from under his. We were making progress and my small frame seemed to be sliding out from under him at last. we would salvage this night and laugh about this together just like Thanksgiving I decided. This was a good week. Cody had been chosen as the Wish Kids Network Hero of the month. I was determined to show Cody together we can do anything, and that Heroes never give up.

Finally freed I knelt down next to Cody. Smiling he told me it felt good to be stretched out. I was pleased he was comfortable, relieved that our tumble had not harmed him. The question now was how would I get Cody up and out of this over sized bean bag to a chair. Pulling and turning him I helped him to sit up. Fluffing the cushion around him until he sat straight and balanced. Handing him the wii remotes, he was now ready to give this new seating a try. I hid my fear. Just pulling him onto that beanbag bed had caused me to become trapped and somehow I alone I would have to get him eventually up on to a chair later.

I finished lifting and positioning Josiah in his recliner, who can not be lifted by the hoyer because of his spinal fusion surgery. I then Stored away the useless transfer board that had gotten us into this situation. It was the board that caused me to loose my grip on Cody in the first place as it slipped beneath him. So much for saving my back. Frustrated, that once again all I want to do is care for my sons and I hit a wall. I am not asking anything from anyone. I am providing and caring for my sons alone. Devoted and willing to go to what ever level, to do my job.

I knew I had two choices, somehow drag Cody from the cushion (which I can not move because that alone weighs 60 lbs and is very wide,)to his bedroom and use the ceiling lift to get him up, or figure out away to safely take him off the cushion and use the hoyer lift. Not so easy. I have furniture to move like a couch, to get the hoyer lift close enough to him, once I get him off the cushion which has him encircled in a deep sink hole. Quite frankly I want the hoyer lift to be my friend, to make all things accessible. I want it to be the answer for Cody. But it can not pick him up from the lovesac/beanbag, which now he is beginning to like. Also, it can not safely put him in his reclining love seat. The footings do not allow it to come close enough or straddle that piece of furniture. So, to all the remarks I will likely hear about regarding lifts, if I want my son to be imprisoned and only use his wheel chair well yes, than it might be our answer. Safety is first but freedom is so important to us.
I am determined to not take anymore from them, even if it means me having to be more than I am.

P.s. we did have a sweet laugh together during dinner. Cody asked me if I started lifting weights like the strong power lifters would I then be able to lift him. Hmm, I am thinking on this.

Sunday, January 1, 2012

We walked together quietly for sometime, our fingers entwined slightly. The moon glistened on the newly fallen dusting of snow. I looked up at the stars that brightly lit up the night sky. The last year had been very tough on us, especially Josiah, it made me feel stronger to have him with me now. Some how he always helped me find peace in my broken shaken world. His hand gently squeezed mine. I stopped and looked at him momentarily, I wanted to know why. Why, was there so much pain in this world. He looked at me as a tear slowly rolled down his cheek. Pulling me closer he wrapped his arms around me. "I feel your sorrow" he sobbed softly into my ear. I hear the cries, I am with all of you always. I wanted to pull away. No, that was not what I wanted to hear right now. I wanted more from him. I needed to know that this was not all in vein. That some how he would end the suffering. He held me tight. I wanted to feel special, I wanted my prayers answered. Most importantly I wanted my sons to live. I wanted to end Duchenne. I let myself relax once again in his arms. "Trust in me" he whispered.

Some how he knew all my fears. Before him I stood broken, lost and alone. I surrendered and let myself sob in his arms. Today was no different than any other except that for these fleeting moments I did not have to be strong. I could bare my soul, unleash my fears. I had arms to hold me up. He raised my face our eyes meeting. Gently he wiped my tear stained cheeks. I felt myself enveloped in warmth. He comforted me in ways I could not explain, helped me to trust in myself. Yes, I knew why he came to me today. For that reason alone I knew I would not let him down. I could feel his heart beat as he held me. In a soft whisper he simply said "it is not time yet, soon, for now you need to be strong and have faith." He was so real so alive, with me right now. We walked some more then stopped. Our time together was up. It was time for me to go back and be all that I needed to be. I knew I had more challenges ahead of me to face. I understood also this pain that overwhelmed me at times would be with me throughout my journey. I would weep from heart ache but, I would also know unconditional love that few would ever know or understand. Love that God has intended for me to feel.

"Like you I have wept in pain and also felt joy" he said to me as he turned to leave." I am with you always, when you feel the most alone I am at your side." It felt good to hear those words again even though inside I wanted so much more. "Jesus" I called out to him as he began to walk away. "I will not give up even when it seems impossible." He smiled and then was gone. Inside of me his warmth, and touch lingered. I smiled at the two beautiful bright smiling faces that were waiting for me, for in them I could still see Jesus and all the love that was meant just for me.