March 15th, 2004 will mark ten years since my son Adam’s death.
As I compose this blog post so many thoughts are in my head. His conception, my struggle with motherhood at 15 years old, learning that he was disabled, coming to a place of acceptance of that fact and becoming the mother he needed and that I needed to be to him up to the time of his death.
I am thinking about my mother and I going to Wal-Mart to pick out his burial clothes. Towards the end of his life, maybe the last two years, he only wore hospital gowns. We had to guess at his size when picking the blue dress shirt and slacks. The clothes were too large and the mortuary staff pinned the clothes to fit his frail and unusually small body.
I have said this before, that writing has saved my life. But even more so, the people in my life have saved my life. My parents did not abandon me. They supported me through my pregnancy and saw me through college. They cared for Adam when I could not and that in itself is a miraculous thing.
Adam had many caregivers from the time of his birth and the four months in Neonatal Intensive Care Unit, through the years he lived at home with us and from the special human-angels on staff at Louisiana Special Education Center in Alexandria, Louisiana. I know that each and every human that came in contact with Adam was guided by the Divine to see his special and loving nature. Adam taught us more than we could have ever taught him. His disability brought us to understanding, humility and tenderness. We are better for having known him. I am better for having been touched by his gracious life.
Ten years of dedication to the Writing Life. Ten years from March 15th, 2004, the day Adam died. My husband and I were on our way to the hospital to attend to him when I got the call from Dr. Buck that Adam’s heart gave out during a procedure to place a medi-port in him to give him antivirals that were maybe going to save his life.
But we knew he was dying. Adam suffered the last several months of his life with pneumonia and septicemia. The last time I saw him he was surrounded by ice because his fever was 108 degrees and rising. My God! How did he live for as long as he did in that horrible state? A few days after he died, I wrote the poem “Ice to Water.” That poem was the most difficult thing to conjure, and was written through tears, but it saved me.
My being is attuned to love. Even when I am fighting I love my way through the pain. I have had to fight all of my life for self-love, for personal justice, and for reclamation. Ten years of writing and seeking mastery of myself through the work. Ten years of working through grief, working in grief—astounding and excruciating grief. I have gone so far on the path but I am still here mourning.
I was just lying in bed talking to my husband. We were talking about his work and my work. I have made very little money in all these years, but the small amount I have made has been spent on my family. We struggle but my poetry money has made a difference when we needed a tank of gas, a pizza, or a few groceries. As I was talking, my sorrow arose and I cried. Something new is causing me grief, a new disillusionment as I continue on the path.
I have put out so much energy to write, to get published, and to grow a career in a field that does not reward in the ways we recognize as success in this world. That didn’t really bother me all along. My perspective was that this is a holy vocation and I was honoring my gifts but somewhere along the way I got conned. I began thinking of commerce and exchange—what was I getting in return? This led to a deep sadness and more tears.
In this moment, as I reflect on the passing of my son, as I write about just a few details of his incredible life, I am brought back to the reason I committed myself so deeply to this path. Honor. I wanted to honor Adam’s memory, honor my gifts, and honor the people in my life. That I was able to succeed in gaining an audience was gratifying but the whole and holy purpose was, is and always will be for me is the “creative love” in the act of writing itself. I say creative love because my creativity/love is what brought me this far and I will not lose sight of it again.
There are many projects that I bring my energy to and I will continue to do so, but if these projects become grueling or dissatisfying, I will give them up. It is not a difficult thing for me to do at all. I am not paid for any of it, except the money I might receive from selling a book here and there. I am not concerned with a “career” because what is that? I am concerned with the creative act and the product, not so much my stature anymore. I am concerned with leaving a legacy of love, and my energies will be focused from this point forward on projects and people who are aligned with this mission.