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Wednesday, October 19, 2011

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.

Monday, October 17, 2011


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.

Sunday, October 16, 2011

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.