We have been very blessed to stay in contact with several of the doctors and nurses who cared for James the night he was born and throughout his NICU stay. Yesterday I had the privilege of speaking with one of the nurses who worked on James the night he was born. She shared her experience of the night with me and her words were quite powerful and left me stammering, looking for words.
She said that once James was alive again there was a feeling of "what have you done?" because of how badly disabled James would be. But then she told me, and I'm paraphrasing a little bit, "Quality of life is not to be decided by doctors and nurses. Quality of life is determined by the person with the problems, the people who love him, and God."
I wrote a post about having a son with disabilities when James was a month old and still in the hospital. I was terrified of what our new normal would look like. I was terrified and angry, and I was still holding out hope that God wasn't done healing my son, eradicating all his special needs. I knew that as a Catholic Christian I should know and believe that quality of life is determined by the person with the problems, his loved ones, and God, but I was pretty sure it would be determined by kids at school, strangers at the store, and my own fears and insecurities.
This issue is something that I had to face for a long moment and then James continued to improve and the issue wasn't forced any longer. It still resurfaces, though. Take, for instance, a recent viewing of The Village. I was watching it with a group of people and when the mentally disabled Noah died and his mother sobbed I sat in the back of the room crying, too. Not because I was invested in the characters but because they forced the issue again.
The fear, the burden, the unknown, the guilt, the loneliness, the relief, the sorrow, and the grief - they still sit in the back of me. Not dealt with. Hidden most of the time. I know that's not healthy but I am not ready to go through it all again. Not yet. Maybe they will just go away.
I am glad for Absolute Truth. God is good even though our circumstances are not. A person's dignity does not depend upon what he can or cannot do. Quality of life is decided by God, loved ones, and the person who suffers. These things do not change based on how I feel or what I believe and so my only options are to ignore them or embrace them.
the music that got me through
this thing that I fear