I stood unable to move, frozen in place. My eyes traveled slowly following the long tubes that were now connected to my youngest son. Under neath the white starch sheets, tubes and bandages wound around his body. Still very heavily sedated he laid motionless, with his eyes tightly shut. I looked at the monitors that displayed his heart rate and the machine that monitored his breathing and then back to my sleeping son. My heart ached for him as I felt tears forming in my eyes. I wanted to scoop him in my arms, hold him, run with him away from this place.
Silent tears rolled down the sides of my face. I moved closer to his bed, needing desperately to touch him. His face was swollen with tubes taped to the sides of his cheeks and running down his throat. They had warned me he would look different and that it would be difficult to see him this way. I felt the choke of tears building deep in my throat as I struggled with a flood of emotions. Slowly his eyes opened slightly as I gently caressed his hand. My heart broke as I watched tears roll down his face, then felt his hand go limp and his eyes closed again.
Surgery had went well for the most part I was told. There had been some unexpected extra bleeding that caused concern, and surgery had taken a bit longer but, he was now appearing to slowly be progressing to a stable condition. The next several hours would tell us more as the medical night crew watched him closely. I sat half curled up next to my sister Marie who refused to leave my side, on a small couch at the foot of his bed that long first night and then eight more nights to follow alone with my Josiah.
Now four years later we continue to rejoice in celebration of Josiah and his recovery from spinal fusion surgery. Today though we celebrate so much more. For although his disease has continued to progress in other areas taking more strength, he is thriving. He is here with us living his life.
I am especially consumed with admiration for him as I begin to pack us for turkey hunting in Iowa. Happy to have both my sons with Duchenne participate in a sport that has given them even more opportunity to challenge their own limits and sore with strength and courage, as they defy the odds of severely limited abilities with the help of a very supportive team that has gone beyond kindness. While I fold Josiah's camouflage clothing that he has been generously outfitted with from this very giving organization, I can not help but reflect on how far he has came and how far as a family we have grown. I am filled with great joy as I prepare all three of my sons and myself to join together to go beyond the world of DMD. In closing I want to share one beautiful thought from Josiah. "Let your smile change the world but never let the world change your smile".