I awaken this morning to a soft, tender, precious sorrow and I sit quietly on the wings of nostalgia. We've had a cold snap and last night there was sleet with a touch of snow - forever now a symbol to me of Joseph, his life, his journey, his death. Two years ago today we began to realize that Joseph was going to die. He needed 80 breaths per minute to keep a 70% oxygen saturation in his blood. The boy who hated anything on his face had begun to panic without his oxygen mask. The boy who was so strong, so vital, needed me to catch him as he returned from the bathroom and called to me with a vocal panic I had never heard from him before because his legs were suddenly incapable of holding him anymore as he negotiated the three feet from his hospital bed to the toilet.
It may seem strange to those who have not been there, but these memories, though sorrowful and painful, are precious to me. What a privilege it was to be his mother. What a privilege it was to serve his noble soul in such a way, to have that kind of trust, that through every distinct chink to the armor of his dignity, he turned again and again to me, to his father, without shame or worry about what we would think as his body began to fail him in ways that would mortify and humiliate. It was an honor to be there to catch him and that he trusted me to do so. I cling to that sometimes, when the failures I have made as a mother weigh heavy on my mind, when the knowledge of how much we put him through in our desperate attempts to allow him to grow up, to keep him still with us chink at my own armor of dignity and open wounds of shame. I remember he called to me and he collapsed into my arms, not with the trust and love of an infant, but with the acceptance and faith of a person who knows they are loved unconditionally. And he was loved unconditionally. His illness taught me so much about myself, so much that it feels selfish and unbalanced. I never considered myself to be anything much, and I admit there have been times in my life that I have railed against the depth of my seeming unimportance in this world, my apparent invisibility and my self-perceived weakness and otherness that I felt kept me forever separated from the meat of the world, on the sidelines, different. I have sinced learned things about myself that render that line of thinking impotent and transparent. It is not that I now believe myself to be central and important. Quite the opposite. I learned acceptance. I learned strength. I learned there are a hundred small ways to make another person feel less alone, even in the midst of a battle so personal there is no way anyone could ever really join them there. I have felt my own version of that and have felt the soft touch of hands in the dark, heard the word of gentle encouragement that got me through another moment, another hour, another day. And I have been gifted at times to be the one to provide it elsewhere, to whisper 'I see you' in the way that only another tormented heart can hear and understand. There is something in this kind of suffering that is so raw, so dignified. It comes with an acceptance that there IS no being saved from it, and there is a certain beauty in that. It is in this kind of burning that things are forged from raw material, that something strong and beatiful is created, the heavy threads of sorrow and suffering giving off faint echo to those who know, to those who hear. Joseph's journey gave that to me and living with all that is encompassed in his absence continues to as well. And so I am somber and quiet today, humbled by the depth of instruction from my 13 year old man-child. I continually learn from him, from the memories and from all that has happened through it and since. It IS possible to laugh when you are hurting. It IS possible to whisper when you cannot breathe from the fear. There ARE hands to hold in the darkest of night. And if you let them, there ARE people who will walk through the fire with you, though rarely those whom you thought would or should be there. They cannot feel or take your pain. But amazingly, they will feel their own, voluntarily licked by the same flame in their willingness to see you through it. I did this for Joseph, as did his father. I did it for his father, as he did for me. Joe, Heather and all my friends to whom I am close did this for me and continue on, and I feel their relief as I step away from that inferno toward cool, calm waters. But I do look back at that raging fire. I do still feel its heat from time to time, and yearn for the soul whose spirit was so transformed by the experience that he lifted gossamer and purified into the ethereal night. I see you Joseph. I still do.