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.