Laughter echoed from down the hallway. I paused folding the laundry momentarily to listen. It was MEA week and my two younger sons were off from school for the next few days. We had happily agreed to entertain my nine year old niece Kayla and her friend Megan during this time. Just the week before my boys had mentioned they missed playing with their cousin Kayla and wondered when we could have her stay over again. It is wonderful sometimes how things can just magically fall into place.

Kayla brought so much joy to my sons world when she was around. They adored her and she doted on them as if they were in her care. Never ceasing to assist them in any way she could, with so much love. I could hear cheering and giggling now which caused me to smile. Kayla as if like magic fit into our complicated world so easily.

When Josiah out grew his first electric chair last summer, I had decided to store it in the garage until I could find somewhere to donate it. While Kayla was over one day she asked if she could use it to ride around the yard with the boys. Josiah in his new chair immediately loved the idea that he could race with Kayla around the yard. After buckling her into the chair and giving her a few safety rules I watched as they began roaming the yard together. Smiles and laughter came from all three as they rounded trees and darted in between bushes. That was our Kayla, she always managed to find ways to fit into their world rather than leave them feeling awkward or uncomfortable about being different.

Today was no exception for her. She immediately began assisting me the moment she arrived. With her beautiful smile she took off down the hall pushing Josiah in his desk chair toward the computer room to help him start up the computer to play Mine Craft. She returned shortly, announcing that she would get Josiah a snack as soon as she helped Cody out of the Lego room, so he could play PS3. I marveled at her ability to accept them so lovingly. She absolutely understood their special needs and capabilities, rather than looking at them with unrealistic expectations. I looked up as Kayla came back to the dining room table, where I folded clothes. So matter of fact she told me Josiah probably should have a snack now. I had to bend down and scoop her up in my arms to hug her. Yes, she was right, we were on a mission to help Josiah gain back the weight he had lost form his surgery a few months prior, and she was eager to help. We were so lucky to have this wonderful angel in our lives. I told Kayla she did not have to wait on them, she could let me know if they need something. With her beautiful blue eyes she looked up at me smiling and told me she liked helping them, and ran off down the hall towards them.

Kayla spent the day with her friend running from room to room taking turns playing with my sons. Engaging and interacting with whatever it was that my boys wanted to do. It was wonderful listening to laughter and seeing my sons so happy. I shook my head thinking back to the day before, when I had wondered if I should have planned something special to do during their time off from school. Watching Kayla as she made herself accessible for my sons I realized I did. Having an angel to play with definitely was special. It is days like this that reminded me, Duchenne may always be present in our lives but, LOVE allows us to see so much much more.

passing

I clicked on to facebook this evening and the news hit me like a hard gust of wind. Taking my breath away for a moment and leaving me to feel absolute sorrow. Another beautiful DMD child was taken from of us today. Fourteen year old Dylan Smith lost in his battle with Duchenne complicated by Diabetes. I sat frozen, reading heart felt note after note from other mothers, who also were members of our Duchenne family circle, expressing their sympathy to Melanie, Dylan's mother. Fear gripped at me while I read. I paused to look up at the little voice that was now asking me what was wrong. In front of me sat my youngest son, Josiah. With his ipad in his lap he waited for my response. I realized my emotions must have slipped past my trembling lips enough to alert him. How much had I let slip out I was unsure of. What I did know was that I had to let him guide me to a sensitive approach to this most delicate subject matter, death.

My Josiah is fourteen, frail in size and still in the final phases of recovering from spinal fusion and experiencing unexplained occasional rapid heart rate. The closeness of Dylan's passing touched me so deeply at this moment. The age fourteen echoed in my head. My brother Richard died at 14 years old. He also had Duchenne complicated with Diabetes. Like Dylan Richard too slipped into a diabetic coma and passed away. The memories of last June spent at the hospital with Josiah began to resurface. I could feel the emotions of fear grasping at me. I was no stranger to death and life threatening situations and yet my own fear could beat me down like torrid rains on a field of wheat.

Looking into the brown eyes of my son I fought to hide the fear that was beginning to grow with in me. Duchenne was frightening enough on a daily basis. For a child to learn of another child's passing intensified the fear that death was never to far away. Josiah had heard enough to feel concern and was now asking me what happened to this boy named Dylan who was also 14 years. It is moments like these when I want to feel Gods hand squeeze mine while he whispers in my ear what to say. It is also the same moments I know, that will cause some one to say wittingly to me- well, yes it was God by your side all along giving you courage and knowledge. But its at these very precise moments when I want a little credit. Credit for not running away and facing all the challenges Duchenne brings into our lives. Praise like Dylan's single mom deserves, for staying by her sons side. For putting her own life second to her sons. Credit because we chose to keep hope alive and the faith that all this suffering will not be in vane. Believing that yes God does in fact have a plan beyond anything we can comprehend but given all the challenges ahead we are still willing to face each day at our sons sides with courage and the utmost unconditional love. But most importantly, honor to our most courageous sons who battle this devastating disease with courage and dignity.

I did not hear any words whispered to me tonight and fumbled through my thoughts alone. There will probably be someone out there who will undoubtedly let me know perhaps I was not listening hard enough or not paying attention. However for the record Josiah and I survived another sensitive moment together. I padded the truth some for his delicate cognitive capabilities and reassured him God loves him dearly. While I keep Melanie in my thoughts and prayers I will hold her loss close to my heart through the night, as I sort through my own fears of loosing my sons to Duchenne.


Final thought- knowing there others out there who can understand the pain Duchenne brings to this world has helped me get through some tough times especially when I felt very alone. It is vital to our sons that we can keep this Duchenne awareness going. Reaching out to each other is so powerful.

R.I.P. Dylan you are now a hero with wings.

Love to all my DMD family members.

My son Zach let know immediately upon the return from my "moms week away" how happy he was to have me back at home, and resume my role as mother. He had graciously accepted the responsibility of caring for his two disabled younger brothers, while I spent a week in Vegas with my two sisters, relaxing and enjoying some much needed time off. As he wrapped his arms around me to welcome me home, he whispered that everything had went wonderful, but I was very missed, by him especially.

Zach spent a few minutes briefing me on the weeks highlights. Assuring me that his brothers were happy, rested and doing very well. It did not take long for me to know that Joanne our sweet neighbor who had committed to come by in the mornings to help him get the boys off to school was absolutely wonderful. I had most definitely made an excellent choice in asking her to help out. Josiah and Cody let me know they enjoyed her company as well. It thrilled me as I listened to them tell me about their time together. Almost bringing tears to my eyes when I learned that each morning she sang to them as she helped them ready for school.

I was even more surprised the next day when Joanne stopped over with two very heart felt thank you notes, for me and my sons. Her first note thanked me for allowing her the opportunity to get to know my boys and entrusting them to her care. She continued to thank me for the wonderful experience and that she feels so blessed to have been able help. Her note to my sons thanked them for accepting her help and allowing her in to their special world. I read her notes several times that day, each time it gave me such a warm feeling.

I spent sometime this weekend thinking about relationships. What it means, the bonds that pull us together and the situations that break us apart. Wondering why there are some people we are so drawn too, and what is it that makes us attract others. In the world of special needs this has always been a very complex and sensitive matter for me. While trying to keep my thoughts mostly to myself, I often have had to bury my emotions behind my smile. Joannes note assured me that I had made a wonderful choice. Even with my own relatives it can be difficult to ensure my boys feel accepted and wanted at times. Thinking back to the nine days I spent with my youngest son Josiah in the hospital as he recovered from spinal fusion surgery, it has become very clear to me how imposing their disease makes others feel at times. Also how left out it often makes my sons feel.

Every now and then something wonderful will happen and it is then that we are reminded what love can do. While all relationships are just not made to last forever, there are those that can grow from one simple act of kindness. As we push forward and accept the changes and challenges Duchenne has placed in our lives it still remains a constant struggle for me to keep my sons connected to the outside world. The world where unfortunately compassion may not always be present. Also the life beyond our accessible home Does not always have room for two wheelchairs. My journey with Duchenne has helped me find the courage to be open and honest with myself. Most importantly though it also has pushed me to continue to find ways that enrich our lives.

My home coming from my week in Vegas could not have been more splendor. Joannes note showed me that by reaching out I had invited more love into our world. I could not be more thankful. If angels do walk amongst us I trust that perhaps my sons needs have helped me to reach out to a few of them.

I will hold you when you are down. I won't leave you alone to face the sorrow. You have all of me. When you are cold I will be there to keep you warm. I will show you the way when you are lost. I will bring you home. If you want to cry I will dry your eyes. I will never leave you. Together we will fight. We will find strength in each other. When your muscles fail I will carry you. If your hope fades I will hold your hand and help you to find faith again. We will never give up because we have so much to give. Through shaking hands and tears of fear we will we see the sun come out again.

When I need to hear" I can" I will look to you for courage. When I am down I will let you bring me up. I will not be able to always hide my fear but, I will be strong enough to let you know I am not afraid to face my fear. I will never walk away from us. When the days seem short and the nights to long I will look at you to find the energy to get through.

By your side I will walk, in your shadow I will shine. You will be my guide on this journey. When the path becomes to rough I will lay down to help you cross. I will let you be the light that takes us from here to greater places. You are so much more than you will ever know. You are my reason to breathe, the reason I am here. There is so much more than what we see. Together we will reach out. Through you- my Josiah and Cody I will touch the world with my words. I will let your spirit soar with hope and inspiration.

I put on my green water waders pulling them over my knees, tightening the straps around my slender thighs. Stepping off the dock into the lake, instantly I could feel the coolness of the water through the rubber, as it encircled my boots. I scanned the shore line, following its path as far as I could see. The worn earth from the summers flooding made the banks appear almost jagged in spots. It was clear there was so much needed work ahead. Mechanically I began moving rocks back to the shores bank. This I knew I was good at, making things look good even if they are not. Storms had raged through the area over the summer, but we had managed to stay safe. I looked over at the brown grass that remained from the lakes cresting into my yard. Yes, indeed we were lucky and spared. But why now as I worked to clean natures mess did I feel emotions flooding me. Inside I felt overwhelmed. It was another Labor Day weekend, that time of year again that leaves me feeling helpless and emotionally alone. Damn, why did I let it control me so deeply? It seemed no matter how hard I tried to stop it, labor Day hit me like a hurricane. As if I have no control, I can feel it rip me in half. Leaving me broken and reminding me of what I have lost and what is to come.

I wanted desperately to feel anything but this explosion of pain that was grasping at me now. I worked harder at picking up rocks and moving them closer to the shore. Hoping that if nothing else exhaustion would rescue me. Stopping briefly I straightened my back, I was beginning to feel some strain. However, I was not having any relief from my Labor Day anxiety attack. I began to feel the sting of anger, this was my free weekend, my weekend off. My weekend to reward myself and rest from the daily lifting I do caring for my sons. What was this I was doing? I am not sure how long I stood there in my waders but, somewhere from deep inside me the answer touched me. Like a breeze blowing through me I felt myself absorbed in the reason why. As much as I have grown to hate DMD it is my world and with out it I have nothing. It is my reason why I fight so hard to see my sons succeed. Its the reason why I push my weary worn body to the limit. It has become my passion and in the most covert ways it controls me. It is also the reason I fight so diligently for something somewhere along this journey to be my escape. A place to let me step away from my fears for mere seconds.

Exhaustion was not going to rescue me I knew tonight. I would have to face my Labor Day woes and find someway to get through them. I will allow myself to feel whatever it is I need to feel, but this time I will look it straight on "with dignity and pride"-words from a FB friend with DMD. Only this year I will accept this is just another part of my world, knowing this too will pass.

Forgive me

I just think you should know I am not as strong as they say. I do not want to disappoint you. Inside I am a beautiful mess. Tangled masses of love left behind from a world lost. I do not want to let you down, but the me you see cries out in her sleep. I am enslaved to the fear that has taken control. Fighting to understand why I feel so captive to my emotions. Clinging to fading hope that nothing is in vain. I stand here now attempting to hide all that is me -behind my smile. I ask no sympathy for that, just that someday, I can be the strength that this world demands of me. I apologize as I struggle to rise from my fall. Excuse me while dry my tears.

All that I have to give now is the understanding of what once was. Does it mean anything at all, the roads I have traveled, the places I have been. Do the people I have known, the events that haunt my soul hold a story. If you strip away my past will it mean anything at all. Will it mean anything that I have been here. Will every step I have taken in faith betray me. Can you know who I am if I am only a journey reaching out to what I left behind.

My steps stray away from the places I have been and the pain I have known. I follow along hoping to find the path that will lead me to where I need to go. Behind me I leave a trail of a life that was once me. Sweet and sad memories that carry me to where I am today. Do not ask of me why the tears still fall. Embrace my smile hear my laughter. Someday If you want to see me take the road less traveled. Open your eyes look for me, where the valley lies low, wandering in a meadow of wild flowers. Among the trees standing tall, I can be heard as the breeze calls out my name. Over the mountain tops I soar through the clouds.

If there is more out there, will it find me. Perhaps I have found it. Can it be that my past has lead me to where I need to be. The strength I thought I lost, never really left me. Maybe all these events were meant to help me to believe in myself. Can it be that destiny is calling to me to be more. Perhaps life is giving me the chance to see I am all I was meant to be.

fly with your dream



There are times when words are not needed because love can touch us in places where mere words can not travel. Then there are also times when honor and praise bring forth a deepening connection and love towards each other.

For my first born," we will cross many roads in our lives that may break us or help us to grow stronger. My love you have certainly showed your strength, as I have. It pleases me beyond words to know that this I have passed on to you. Together we have shared heartache and devastation, only to pick up the pieces and continue forth. Together we have found the true meaning of unconditional love."

It is with great pleasure I embark on the next phase of my journey with my eldest son Zach. In the twenty one years that I have had the honor to watch him grow from boy to man, I have been blessed to see our relationship also flourish. It is with a deep respect, understanding and love that I embrace this young adult before me now. I no longer see before me a child with dreams but an accomplished young man who has openly praised me for helping him to seek out his adventure and supporting his dreams. As he continues to conquer his quest I watch with great admiration. With dignity and pride he has accepted the challenges that have been presented to him. Through sheer determination I have seen him rise from a young boy of a single parent home to become founder and CEO of his own gaming review company "Media Cows". Because of his commitment to succeed and the love he holds in his heart for his terminally ill brothers I have no doubt he will hold tightly the family values that have been bestowed upon him while his business flourishes. So it is with great pride, love and admiration I introduce my beautiful son Zach to the world. " My first born, sore, let your wings carry you far, allow your heart to guide you when you feel doubt and your mind to help you seek all that the universe can offer.
"Zach who have dared to stand out alone, you have defied the odds and you took a chance. As you open your arms to the world, it is my hope you will contniue to be an example of compassion and strength. Always stay true to yourself and do not let the doubt of others control your desires. You have witnessed what selfishness can do and you have seen what can be accomplished with love. You are on your way-to greatness