What is a good death?
Non-traumatic. Peaceful. Pain free. At home. Surrounded by those who love you most. Calm. Spiritual.
Can it be beautiful?
Can it be sweet and lovely? Can we be deeply present for it?
We have considered and discussed over these past few weeks. Aimee is on day 9 of this combination of 5 different antibiotics, which follows after a 14 day cycle of a different combination of 4. It is not a cure. She has been mostly sleeping, though sweetly happy. She has bursts of wakefulness followed by deep rest. It has been quite beautiful how intentional she is being with her energy, more than I imagined that she could be. She chooses to be present for key moments and connections. She is giving us little knowing grins and lots of hand squeezes.
Ed and I have come together to a place of peace. Maybe not peace completely, but a place of certainty, of a light guiding the next footfall. Once this 14 day course of antibiotics is completed, we will not continue forward on further antibiotics. They have been an amazing tool that have given us 4 years together at home. Her doctors have so trusted us with treating her here and given us every massive antibiotic and tool that could possibly work. We have had our own ICU here in Aimee’s room and truly believe our decision to treat her at home has saved her life countless times. There are no more tools. Of what her cultures are growing now, 3 of the strains are not treatable by any combination of antibiotics. We can knock down the symptoms for a time, but we believe that if we continue to struggle and hold on while these “machines” (as Louisa has called the bacteria) become more aggressive through her body, that it will mean a more difficult death. If her intestines shut down first it will be much more painful. If her pulmonary symptoms develop to greater intensity, it will be much more traumatic. Sepsis could be a more good death.
I never would have considered those words to belong together. Yet, as we prepare ourselves, this process has echos of preparing for birth. It is inevitable. We cannot control the timing. There are signs that it is drawing nearer. It has anxiety and even some fear. And yet, we believe that on the other side of the pain there is the beauty of new life and the hope of a greater love than we ever before imagined.
After our discussions with Pulmonary and hospice, we have come to realize that it is now time to open our hands and to let Aimee decide when to fly from this beautiful, broken cage of a body. We are transitioning our focus from treatment to savoring her presence and maintaining her comfort. As a family we are trying to be fully present here during this time with her while we also look forward with hope towards an eternal future.
