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Friday, January 29, 2010

2008
Cody walked to day his steps were few and very calculated. He struggled so desperately to let each foot raise and again come to rest on the floor beneath him. My eyes filled with tears of great joy and yet sadness. My beloved child before me fought so diligently to obtain some strength in his dying muscles. This was a good day, I reasoned, within myself, Cody walked. He took steps, no matter how few, some were better than none. But by comparison to what? Each day more fear grows inside of me as I become his legs and arms. . Alone I watch this beautiful child loose himself to a disease that shows no mercy and strips away all hope . While I smile at him now and sing praise to the five steps he took my heart breaks in silence. Later within the walls of my own room my tears of the sorrow yet to come will flood me. I will cry. I will face my greatest fear and challenges. Alone I will pull myself up and out of the darkness I feel, and be all that my beautiful children need. Through shaking hands and sobs of heart felt pain and loss I will carry Cody forward.

Josiah pulled himself up from the floor today. Though he took much assurance that he could do it he finally raised himself to a standing position. It took so much for my little one to make his weakening muscles allow him to stand. His eyes showing the enormous strength he puts forward into such a simple task for most of us. I rejoice in tears. He managed a task Cody no longer can. We embrace to celebrate another moment of victory. Inside I feel torn and fear growing. Reasoning again I know this is a good day Josiah stood by himself. When the day ends, again I will cry alone my tears of loss. Then find comfort by remembering moments of a time when life felt different. For now I will enjoy Josiah and celebrate all his abilities. We will take one day at a time. My fear and sorrow I will hide today. I will be strong for Josiah. I will be the muscle he needs.

While I fight my own fears and search for courage I pray that I can be strong enough to never let Josiah and Cody feel alone. I know I must put all their needs first and be the forces they will need to get through each day. While holding back my tears I will have to dry theirs. To help them face each day with courage I will have to hide my fears. Even though I walk alone at times I will have to let them know I will be with them always. As the sun rises tomorrow so shall we, together.

a simple walk

I took a walk with Jesus, yesterday. The thin layer of melting white snow crunched under our feet. I shivered from the January north wind and pulled my collar tighter around my neck. Feeling happy, I had chosen boots to wear for our walk. Jesus walked only in sandals and a white flowing robe of cotton. We walked in silence for some time listening to the sounds around us. From the trees above our heads birds could be heard chirping and some children’s laughter echoed from a sliding hill in the distance. Then ever so gently he put my hand in his. Speaking not a word he gave my fingers a light squeeze, then rested his fingers softly against mine. We walked some more holding hands in silence. I felt warm again. The breeze that had been whipping against my cheeks seemed to lesson and no longer sent chills though my jacket. I felt warmer, safe and somewhat at ease. Without a single word I knew why Jesus had came to be with me now.

“Jesus” I finally turned to him and said, “ I am not the one”. We stopped walking for a moment and Jesus turned , stepping in front of me. Tenderly, he put his hand under my chin lifting it enough to look into my sad eyes. He gazed at me with so much love. So beautiful his face appeared. Tears had been building in his deep brown eyes. I watched as one trickled down, sliding so gently against his soft smooth skin. “But you are” he whispered softly to me. I looked away for a moment then back to his eyes that filled my heart and soul. . “It is so hard, I can’t do it alone. My heart feels so broken and I am so scared” I paused “ and alone”. I whispered softly, hearing my words echoe as is spoke. “ I feel so much pain and loss”. He put his arms around me and pulled me closely to him. I could feel the beat of his heart and the warmth from his body. I let him hold me, sobbing softly in his arms. Somehow he made me feel strong and beautiful. Not the scared lonely soul I knew, as me. The single mother who buried herself in the special needs of her two youngest sons. A beautiful mess broken and used in every relationship. He made me feel loved something I had only known as a mother.

“I chose you,” Jesus said holding me tightly. “You are the one”. He spoke gently “You are part of the plan, I need you”. “Before you were born I knew I would choose you,” Jesus said stroking my hair. “I placed two of my most precious ones in your care because I knew you would not fail”. He breathed deeply pulling me closer. “Jesus I am falling apart” I cried. “ That is why you are so special for the job, you are facing your fear”. Jesus replied. “You do not hide from the pain or ask why. Only that I be with you.” His words meant so much to me. My Jesus believed in me and for the first time in so long I did not feel alone, in his arms I wanted to stay forever. I looked up into the eyes of my lord. There was no place more peaceful and loving than this time I was having with him now. Jesus brushed strands of hair from my face and smiled. “You will feel pain and you will feel alone. You will cry a river of tears. You will love and you will be loved. You will live and you will die, just as I”. He said, kissing my forehead gently with his soft lips. Sighing I looked down. He put so much faith in me, this man who stood before me, who died for me. Raising my chin again to look in my eyes he said “ trust in me”. I knew I would not let him down. I had come this far.

Silently we walked some more hand in hand. Then Jesus turned once more to me “your children will guide you and from them you will find strength, they are my gift to you.” He said. “You will shine through their eyes”. I looked away and realized we were at my front door. Looking into his eyes, we embraced for one last time. I rested against his chest wanting to remember this time forever. “I will always be with you” Jesus said. I held him tight. This man gave me love, like, I had never known. He did not ask me to change or be different. He did not criticize or make selfish demands of me. Jesus did not judge me for feeling scared or different. He trusted in me. He helped me to see my strengths and trust myself. He helped me to see all that I was meant to be. My fingers slowly slid down his back as I drew a deep breath. I stepped back to look at him one last time, his beauty captivating me. I knew we would be together again someday. For now, I was needed here, with my sons. He had helped me to find my strength and trust in myself. He knew me so well when I needed him most he came to me.

It was snowing again and the wind began to pick up but I still felt warm. Jesus turned to walk away and looked back at me for one last time “ I love you” he called out to me. I smiled I was someone beautiful and special because of him.

Monday, January 18, 2010

Cody told me today" not being able to walk sucks".
Yes, I agreed, it did.
I saw some new anger in him I had not really noticed before. He wanted new batteries for his WII remote control, which just happened to be upstairs in the kitchen. I asked him to wait while I finished assisting his brother. Josiah had been building with Lego's and was feeling his own sense of dependency from Duchenne. He had been struggling to open some new packages of blocks. Lacking the strength to pull open the plastic sealed bags by himself, I was needed. Cody strapped in his Easy Stand 500, a machine that helps him to stand, waited. Throwing his remote control to the floor and using some more verbal phrases he let me know how much more it sucked having weak muscles and that he wished he was stronger.

Wow, I thought while I fetched him fresh batteries, I had not heard him have such anger towards his disease before. I had heard him in the past become sad or frustrated but anger towards his disease was new. I too also wished with everything in me that he could walk. Two new batteries later, letting go of his anger he returned to his game. I still felt troubled. Anger was normal and necessary but, it still made me feel helpless toward him at those times.

I went back to folding my laundry, but anger felt as though it was creeping up inside me now. I peered out the front window and watched as some children slid down the snow covered hill across from our house. I smiled for a moment as I recalled the days when I walked to that hill with my boys. Josiah perched on my hip, while I pulled Cody on a sled. Zach running ahead of us dragging his own sled. I climbed the steep icy hill toting Josiah in my arms and Cody on a sled tied to my waist, up the hill we went. My feet side ways to keep from slipping, very determined to let my children go sliding. Down we would slide, Cody in the front, Josiah nestled in between us. It felt good to remember. It felt good having memories of a time that did not present us with barriers I could not brake through.

I came back to now. A Little voice could be heard calling me. "Mom, I dropped Lego's. Help I can't reach them". I was needed again. I helped Josiah retrieve his Lego's. The anger was creeping back inside of me again as I heard Cody attack being weak again, on behalf of his brother. I decided today was our angry at Muscular Dystrophy day. I would join Cody with his anger towards this disease. I would sit down and write my feelings out. I would list all that made me mad or feel helpless in someway. I would acknowledge they existed and hopefully let them go.

I was not prepared for the tears I had apparently been building up. Nor the flood of feelings that erupted. The one thing I did know was, this disease always present in my life was also always taking.

I thought back to when my brothers were alive. Struggling with this same horrific disease. I remembered days when they would cry from being frustrated, angry or bullied. A neighbor girl one day smeared chewed bubble gum in my brother Richards hair. Forcing him to get his beautiful blond curly hair shaved off. I thought of the day when my brother George had a brick tied to his leg by another so called friend. He was left alone unable to walk and unable to remove the brick. I remembered the days when my father so depressed and unable to cope with his sons crippling would drink until he passed out. I remembered my mother so tired from lifting and carrying them would collapse in a chair exhausted. I thought of the days when my sisters and I would try to help with lifting and bringing them to the bathroom. I recalled the fear we felt when they would get very sick. I let the painful memories of their deaths surface. I let loving memories and heartache flood me.

I also remembered hating this disease too. Just like Cody was feeling now. It robbed, it stole, it showed no mercy. Never ceasing in its progression. It caused loneliness, anger, depression it took with out boundaries, it killed. I went back in thought to the painful day when Cody was diagnosed. Then to the day when Josiah was diagnosed. Times that I had never felt more alone in my life. I cried. I thought about the pain it added to my crumbling marriage
. I thought about the pain it brought to all three of my sons. The sacrifices my son Zach has had to make while I care for them as a single parent. I thought about all the relationships it affected in our lives. I sat and I cried. I thought about the 480 days ago when Cody stopped walking. I recalled the last time 6 months ago when Josiah was able to walk upstairs. I cried because last week I dropped Cody while lifting him. I wiped tears away and thought about the hoyer lift that only works on one level of my multi -level home. I cried because it was becoming increasingly harder to take my sons any where alone. I released tears because I was afraid to think past today. I was angry because I knew the disease was still here to take more. I cried for Cody and Josiah, for the life I knew they would never live. I embraced my pain, reclaimed it and sent it back into the deepest part of my soul. Hoping to not have it surface again for a very long time.

Then as if like clock work I dried my eyes and went on with my day. After all, I still had to be a mom. Assist my boys, be their arms and their legs. Lift them, make meals, clean my home and most importantly let them know they are loved and needed beyond words. I had to once again put on my smile, hold my own hand and offer something positive to my sons, me. The best me I can possibly give. The me who knows; fear, heartache, compassion and love.

Tuesday, January 5, 2010

another day in our new beginning

It was a delight to spend a warm hour watching my boys swim today. Outside the frigid artic air brought the temperature to zero for a high. Enclosed in this glass room we could see snow all around us but the air felt almost tropical. Cody and Josiah with their newly appointed grandma/friend and swim assistant Janice laughed and splashed while stretching their limbs. I have spent a good part of my life trying to bring special people into my sons lives. When physically challenged, playmates are not always the easiest to find. Finding a special person that can make the connection means so much to a child that just wants a friend. Cody and Josiah had connected with Janice, it was wonderful to see. Cody so free in the water shined as he brought himself to a tall standing position next to his new favorite friend grandma Janice. Oh Janice, I thought, you have know idea how much Cody and Josiah look forward to spending time with you.

This was the kinda day when my energy level soared. I sat on the sides with my faithful companion for swim day, my sister Marie,
enjoying. Our routine together we had worked to perfection. She assisted them with showering, while I did the drying. It is truly a connection when you have a partner that knows the exact moment to assist with out words. Recently it seemed Cody was becoming increasingly harder to lift and maneuver. On a few occasions, I found myself somewhat unable to transport him alone. Marie with out words or hesitation, found her angle to slip in and help turn him in my grasps, to where we both could support his weight. It seemed as the temperature dropped outside transporting also became harder. Today was colder and I had my extra muscle, we were ready. I had Marie.

Moving my sons from building to building on any given day requires patience and strength. When the weather is most certainly not cooperating and icy walk ways are factored in, fast, just is not fast enough. Slightly chilled we were at our second appointment for the day and met by a wonderful young man. I will refer to him as J.

Very eager and happy to meet Cody, he can not wait to introduce himself. J is also participating in the drug study with Cody
. Second in the world to follow Cody, he excitedly shares his hope and optimism. With in minutes J and his parents are asking questions, and sharing in their excitement. I see in J the same hope and fear I see in my sons. I can not help but think we are some how meant to meet, just like this. For this day I know will play an important role for what lays ahead. We have met some one else who can relate to this new phase in our lives. Someone else to walk down this road with. Looking at Cody and J, I can see how important it is to have a special friend when so much of your life is closed. A special friend who shares this open door.

I read an article not to long ago on the subject; "the difficulty of making new friends after 40". I understood this very well. Having to start over after my divorce I knew what they meant, why 40 and beyond was so different. Anyone who has had children also knows how life changes, friends are no exceptions. I am a firm believer when one door closes another opens. My motto for reentering the dating world.

Today sitting before me was J. A bright spirited young man embracing the opportunity to meet my son and share this journey. A new friend for Cody and myself. Wednesday together they begin this journey in to the next phase of their delicate young lives. I look forward to sharing our strengths and hopes. I look forward to embracing our moving forward in finding the cure for DMD. I look forward to seeing Cody and J walk together.

Monday, January 4, 2010

2010 a new year a new beginning

My oldest son Zach told me about a story of Internet bullying this evening. It was a story of a young man in high school that had been a victim of Internet bullying, tragically it lead to his suicide. He had kept this abuse hidden from his family and apparently his friends. For they too were not aware that it was troubling him so deeply. One evening his parents found him hung in his room. His tragic story now a topic of discussion on line. My heart ached at the thought of someone feeling so alone that they would end their life over words from someone they hardly new. I could not even imagine as a parent what the pain would be like to loose a child that way. It appeared this young man had not been a loner. He had friends, hobbies a family but, something touched him that know one else saw. Zach had brought another question to mind. If you have positives in your life, how can a person just let go for something negative. I could not let that thought go. It echoed in my mind.


While tucking my two youngest sons in bed I kept thinking back to this story. I leaned in to gently kiss Josiah good night. It felt good knowing he was safe here with me. I walked over to Cody to give him a kiss he beamed "I love You mom". My beautiful sons were all home safe, appearing to be happy, the way it should be. I had to take a peek into Zach's room he too was home safe, playing xbox.

As parents we try so desperately to protect our young from harm. For most of us it is just natural instinct, never requiring a second thought. With my own three sons I have played the over protective parent many times, even though it may not have always made me very popular. We've had many conversations about bad people. More times than I can count I have questioned them regarding abuse of any kind. I thought for a moment, does that fear ever go away for a parent? The fear that their child could become a victim to some evil act. With so much pain already in the world how do we combat the unseen villan?

Having two sons terminally ill, I have always carried a fear of my sons being bullied. Growing up I can remember my brothers who also had the same disease as my sons, being brought to tears as they became the target for a bully. Angered by their pain of being bullied and made fun of I wanted to search for the bully and confront him. I was not successful at avenging my brothers very often. It did feel very good though when I began to date, to let a few neighborhood bullies know I had not forgotten how they treated my brothers. While I was referred to as a hottie a date with me would not ever be possible. I wonder what makes some of us stronger than others? What makes our skin thicker than that of someone else? Could there ever really be an end to bullying?


I have spent countless hours looking at the differences and similarities of my sons lives to that of my brothers. While my sons are growing up in a single parent home unlike my brothers we do have a loving support system with my sisters and their families. Living in a time where we do not tolerate discrimination has certainly played a significant role of how my sons are treated too. However the bully still exist and he has more tools than before. I can not claim my sons have never been bullied. I can claim I am not afraid to do what it takes to confront or stop a bully. How can we really measure though the damage that hurt has caused?

Living with something that makes us different from every one else such as a crippling disease often makes one an easy target to be bullied. The bully whom ever he may be looks for a way in to make himself feel better. How do we get past the bullying?

My heart goes out to all the victims of a bully. If I could give you one thing I would want you to know that you are loved. The thoughts of one loser does not define who you are. Find that positive point in your life, run to it hang on to it, let it give you purpose and strength. Never be afraid to share your pain after all love can heal.