When I walked

My Josiah asked me today if I can remember when he walked. So simple and matter of fact, looking at me while I helped him dress, he waited for my response. I stopped and looked down into his beautiful deep brown eyes. Half afraid where this may be headed with memories of him walking starting to flood my mind, I searched his face for something of a hint to what might be coming next. He looked at me with his soft gentle features, patiently waiting for me to answer.

Yes, I did remember when he could walk. Images of his slender young body moving freely, flashed before me. I ached for those days and wondered how often he thought about them. How much was my little boy holding in? It was only a little more than a year ago that he could still take a few short steps independently. Now not even standing was possible. Silently I mourned that loss too. "Yes Sweetie", I told him" I do remember". Looking at me, he said he wished he still could. Its these moments that rip at my already broken heart. Filling me with so much sorrow. Oh how I wished that with every part of my being that too. Hiding my own pain, I held him in my arms letting him recall his ambulatory days.

Josiah spoke some more while I continued to dress him. Ever so often an image of him flashed through my mind while we talked. I pictured him walking on the beach, standing in our new house. Walking at our old house from room to room. I remembered him walking up stairs. Finally he paused and asked if he would ever walk again. There it was, what I feared. Laid out in front of me, so simply put. My heart sunk. All I could offer him was hope. That dreaded four letter word. The word we cling to when there is nothing else. The word that keeps us from giving up.

Today however, I wanted to scream this sucks, its awful, I hate it too. I did not have words of encouragement ready to spill out. I did not feel or see the light at the end of the tunnel. All I knew was while we mourned his loss of mobility, I somehow have to help him move on. Helping him to have hope seemed in may ways to not be enough. Josiah could remember walking and all its glory. He could recall when he was stronger. He knew what he once was able to do. He also knew the pain caused from remembering. The sense of loss he felt now and the constant fear he lives with, knowing he will loose more strength.

Before I could find the right words, my precious son told me it sucked and he hated not being able to walk. My eyes watered, as his eyes filled with tears, letting me know how much this pained him right now. Cradling him in my arms, we cried softly together. The last several months had been hard on the Duchenne community, with the recent passing of 2 fourteen year old boys. It was remarkable that my fourteen year old Josiah had maintained his emotions as long as he had. Today we mourned all our losses. I let Josiah know it was okay to be sad, and that I was, as well as many others, were hurting with him. Hating this disease with him. I wanted him to understand hurting did not make us weaker as humans and sometimes sharing our pain made us stronger. My son needed to know that he had every right to feel what he felt. That did not mean he did not trust in God, or believe in miracles. It did not mean he might not ever get stronger, or that he was giving up on hope. Because, hope would always be there for us when ever we wanted it. He was simply being human, feeling emotions that God allows us to have.

It was three o'clock and I decided to stand outside to wait in my new hot pink beehive wig. Just as I finished adjusting the three plastic black spiders, that cascaded down the sides, I saw the school bus coming. It did not take long for my Josiah to notice. He immediately lifted his head smiling.

I watched as the bus aid began to unbuckle the tie downs that kept his wheelchair in place. His smile widening as I blew him a kiss. Strapped behind Josiah was my middle son Cody. He was now beaming as he looked out the school bus window at me. It pleased me so much knowing my simple effort could make them so happy. I am sure somewhere else in the world would be a mortified teenager, if upon there ride home from school, stood a mother waiting dressed in biker clad and a hot pink wig. As for my two youngest they simply adored my silly side and encouraged it. Often asking me to do voice overs. My imitations of Marge Simpson could drive my oldest son Zach to leave the room, but my Josiah and Cody would engage in long conversations as I impersonated the blue haired cartoon character Marge.

I hustled the two of them inside the house to discuss the plan to prepare for trick or treating that evening. They were delighted to learn their oldest brother Zach would be joining us dressed as Santa. A few days prior Zach had generously volunteered to accompany us. I welcomed his help immensely. We loved Halloween and I felt determined to make it an enjoyable evening to share with my sons. I could remember past Halloweens when it was just me attempting to get them both up to the neighbors front doors to get treats. Even though both Josiah and Cody had electric wheel chairs to go from house to house Halloween night did not happen easily. We hardly ever encountered a house with out several stairs to the front door. Which had me leaving them alone down by the street or in driveways, waiting while I ran up to the homes explaining my waiting sons below. The homes with accessible side walks leading to their lit entrances did not allow any room for a wheelchair to turn around. Often my sons wheels would find dips in the grass and become stuck, sometimes requiring all my strength to pull them out. Now I beamed, I would have a companion and muscle with me and I did not have to ask for help. It also felt wonderful to not feel like I was burdening anyone. If you have never been at the mercy of the assistance from others you can not even begin to understand, how degrading and helpless it can feel at times.

With dinner done and my nephew George also now joining us we dressed to head out. I quickly found some items to turn him into a pirate, joining Cody's theme as captain Black Beard. I was rather surprised to learn on this chilly day that my 14 year old nephew George came to us from school with out a jacket. As a doting meddling mom I saw that I could take care of that too. However, I could not help but wonder as I assisted my two sons and nephew, how much I handled without giving it a second thought. I had fitted three dogs in costumes, turned Josiah and his chair into Noah and the ark. Dressed Cody and George into pirates along with turning the front of Cody's wheelchair into a pirate ship, and then laid out Zach's Santa suit. With five minutes to spare, I also managed to turn my self into a sort of Jack Sparrow look a like. With my pride in tack cause I was able to do it all, we were ready, dogs and all.

We walked the neighborhood in our little group. Zach and George running up to doors for Josiah and Cody. Me so thankful for the help. On several occasions those answering the doors would come down to where I waited with my boys, complimenting them on their costumes, and admiring the dressed dogs. I can not help to think though, it was my son Zach dressed as Santa who drew people out of there homes. As he captivated those who answered the doors, with out hesitation he directed their attention to his waiting brothers.

It was a good HALLOWEEN for all of us. After George was finally convinced it was time to go home I put my two younger sons to bed. I had some spare time to thank Zach for giving up his night to help me out. Zach and I talked a bit about some of the responses he received from people as he told them he was trick and treating for his bothers. A few people actually apologized because they didn't notice his brothers right away. Zach asked me how was I able to handle it all these years having to explain over and over the condition of his brothers, he told me it was exhausting mentally, and physically, just taking care of them for a few hours. I went to bed that night feeling good that I could still do all that I do and take on extra. After all someone less than half my age had just told me my life exhausted him, I had to laugh to myself, he did not even have to fit in the dating part.

It has been a arduous struggle for me to accept that am I loosing in my capability to lift my son Cody. Somewhere I will undoubtedly hear from someone telling me a ceiling lift is my answer or a hoyer lift. The lift we have, it helps in the home in two rooms, it does not help outside the home. What I am really talking about is much deeper. Whom I hope to reach is the mom or dad who understands this part of loosing yourself. Loosing the physical ability to care for your child. The pride that comes with knowing you can. The will to go that little extra, just to do it on your own. The never ending sacrifices you make because you love your child so much. The hours and hours, spent on finding ways to make it all work for your child. Also, having to live with the fear, that after all this you may just have to go it alone, and because of your love you hold for your child you are willing to accept all of it.

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.