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.