Lost in my thoughts I walked slowly through the mall. Remnants of Christmas still lingered in the store front windows, next to large sale signs. Unlike the weeks before Christmas the crowds of mall shoppers had diminished. However, tonight youthful noise bustled all around me. I noticed a few groups of challenged young adults casually strolled around shopping with PCA's. No doubt the mild weather and low crowds made for a pleasant evening out. I smiled to my self as I watched one group gather at the pet store window. Laughing, as they watched two playful puppies wrestle around. It reminded me of my Cody and Josiah when occasionally we ventured out to the mall stopping at the same pet shop. I envision momentarily Cody with his classroom, a group very similar. I continued on my way to my next stop, feeling very happy to have been able to see how much joy watching those puppies gave them.

Behind me as I walked to one end of the mall I could not help but over hear the giggling of a small group of teenage girls. At one point it was almost as if the girls were walking next to me. As I glanced over, I immediately discovered what they had found so entertaining. Held out in one young females hand was a cell phone. On the screen she had captured in video the young man that had been walking ahead of me. Pointing and laughing, the group of (little Barbie want to be's) followed him filming. Partially slumped forward and slightly limping he strolled along. Hopefully I prayed, he was unaware. I felt absolute sorrow that his difficulties were an amusement. Turning to the girl holding the cell phone I remarked her behavior along with her friends was absolutely cruel. Not to any surprise she retorted back "old bitch" and laughed. I know that at best I only managed to brake up their mean girl party momentarily. While the groups attention was diverted to me and what they had managed to capture on tape, I watched as he exited the mall.

As the girls walked past me giggling I wanted to say something more. The impact of what had happened hovered over me, moving me more than I wanted. I could not help but think, this was the same mall my Cody had visited with his special Living Skills class. It saddened me deeply that perhaps this was the welcome my own beautiful son and his friends may have experienced at some time. On many occasions Cody has preferred to stay home rather than venture out into the community. Desperately, I did not want this to be the reason. I did not want to imagine that some how he had been subjected to bullying with out my or his teachers awareness. Both my sons have commented on the fact, they are very aware some people stare at times and it makes them a bit uncomfortable. Angered a bit at myself that I did not do more I left the mall. I knew that had it been my son I saw being victimized, I would have reacted much, much more.

I talked to my sons the next day about bullying. Cody very casually said "yep, sometimes people are just mean". "You just got to move away from them." Josiah simply told me he did not like mean people very much. I felt better that they did not have some deep hurt they were carrying around.

I wish I could have been more forward or found some way to humiliate those girls. I have to forgive myself for not being more courageous. It is my hope that I can grow from the courage I see in those suffering day to day, in a world that can be very unkind at times, and not so caring. I can embrace being called an old bitch, look out. On that note I now understand why Cody gave a Barbie he had gotten a hold of when he was young a haircut.

Gently I laid my hand across Josiah's chest. Even before I could feel his heart racing I could see beneath his shirt, rapid palpitating. Fear began to invade me as I looked into his deep brown eyes. Josiah knew what was happening, softly he described his symptoms to me while I adjusted his thin body on the bed. Trying to give comfort to both of us, I reminded Josiah of his last visit with his cardiologist and our discussion. Following her instructions I put a cool damp wash cloth across his head. His eyes followed me as though he was trying to read my face, softly he asked me if he would be okay. With out hesitation I answered yes. But my mind fought other thoughts.

I sat next to Josiah holding one of his hands in mine and placing my other on his chest. Definitely it was happening again. The rapid heart rate episode that had put Josiah in the hospital six months earlier was repeating itself now. I was given a completely logical explanation and diagnosis of what was happening with Josiah. I had been assured while these episodes are quite frightening and do require awareness an emergency room trip will not be necessary if he is able to effectively calm his heart rate by resting. However should these episodes continue to happen there is some great concern. So here it was again, a reminder of just how much control Duchenne had over us.

Christmas was in three days, that notion rested heavily on Josiah's mind. He did not want to spend the holiday in bed. As my Josiah and I waited out the rapid beating together I tried to find things to help take his mind off our present concern. I tried to talk about what Santa might bring for presents. However Josiah had other things he needed answered and the question was- Is Christmas celebrated in heaven? He needed strength from me now and hiding my own fear was slowly becoming harder. Fast this was becoming quite an emotional time of year for me, not only did Christmas remind me of the anniversary of my mothers passing but also of the child I lost in a miscarriage. I curled up next to Josiah holding him close, telling him this time of year is so magical. It is celebrated in so many different ways such as Christmas, Kwanzaa, Hanukkah. Heaven most likely celebrates in the most glorious way. Most importantly I told him I do believe in Christmas miracles and he was mine.

Josiah's heart rate was elevated for 15 minutes. He rested for a little over an hour and then asked to be helped to sit up to play Lego's. He did not complain of anything the rest of the day. It was a very long fifteen minutes while I watched over him. I battled with my self resisting to call 911, trusting in the instructions of his medical staff and pleading with heaven. By night fall I surrendered to tears in my room alone. Tears because I was so thankful that Josiah was better and that somehow I always managed to be what my sons needed. Tears because I am human and at the end of most days I go to bed holding my breath afraid that somehow it might not go so well next time. Tears also because at the most wonderful time of the year, I am reminded once again of the magnitude of how alone and helpless we can feel in this world. Tears because of the guilt I felt in a weak moment, wanting just this one time after consoling my son, to be held.

I marveled at the very intense expression on my nephews face as I looked at the photos of him running in a track meet. With his lips half curled, caught in a snarling grin, I could almost feel the intensity of his attempt to catch up to the runner in front of him. His long sleek limbs, stretched in a paused motion, defining his athletic toned muscles pushing against gravity. I smiled to myself remembering the clumsy toddler he once was. The little boy who waddled with a silly half frown on his large bawled Charlie Brown head, following awkwardly  behind my son Cody, as they played together when they were very young.

Desperately I wanted to be enveloped in my sisters joy as she shared her photos with me. Inside I struggled. Feeling almost embarrassed that I secretly wept looking at his strong young healthy body. As happy as I was for my nephew Blake and his mother at all his athletic achievements, I could not help but quietly mourn the loss I shared with Josiah and Cody as their muscles weakened daily. Damn, I hated Duchenne. What she shared with her son tormented me in the most covert way. I fought hard not to let the adolescence of my nephew remind me of limitations that were now apart of my sons world. I delighted as best I could in sharing with my sister different events that surrounded our lives. While she told me about track meets, Lacrosse games, and Blake learning to drive, I spoke of Dr. appointments, Specialist  and swim therapy.

Why was it, I wondered that the holidays we shared as a family somehow often left me feeling awkward, and somewhat inadequate, as a human. Like somehow, I just did not measure up to the world around me. I was with family that I loved and family that loved me back. Relatives that cherished my sons. Yet, I struggled with being a single mom next to my happily married sisters. I struggled with feelings of helplessness when maneuvering my sons outside our home. Almost alarmingly  to myself, I found myself fighting diligently to hide my overwhelming sense of the loss I felt, watching all of my nephews approach their teen years. Age and achievements went together so well in their ambulatory world. Where age meant loss in the world I shared with my  two younger sons.. It pained me deeply to not be able to completely rejoice inside, for all the glory in my nephew's achievements. I felt a slight disgust with the anguish I tried to bury in me. Somehow, I knew I had to set myself free from the hold I had allowed Duchenne to have on me, once again.

I entered the room where my Josiah and Cody had been playing at my sisters home. We had been visiting for Thanksgiving weekend and she graciously had given up her bedroom for my sons and I to share. There waiting for me was my simple joy to pull me back. Back to the loving world I shared with my sons. Cody had manged to reach for a post-it note with his very limited strength.    Plainly he wrote some X's and O's . He then had managed to scoot in a desk chair on wheels across the room to a near by bureau. Out stretching his arms  he attached it to a photo sitting on my sisters bureau. The photo was of my sisters beloved dog, Angel.  A long haired tailless shihtzoo   that had passed away earlier this past spring. His note brought tears to my sisters eyes when she followed me into the room and saw it. Cody had touched her deeply with his very sweet gesture of love. I stood next to her sharing silently in the realization of the magnitude of effort Cody had put fourth to perform this gesture of love.  He had managed to use limbs  that  barely had any muscle strength to propel against carpet and defy gravity.

My sons may never run in races or play sports. While they watch their cousins strive to be first or the best in sports they will battle in a fight for their life, against a disease that shows no mercy. There cognitive delays will be another constant struggle for them. I will most undoubtedly continue to hit low moments that will rip at my heart and often leave me feeling broken and beaten. But with that I will also be rejoiced in pure amazement at the acts of love my sons will willingly distribute for no reasons other than to express and share love. This Thanksgiving though I am so thankful I have once again been blessed to see beauty in such small acts of kindness.

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.