"Hallelujah! He didn't die from cancer, God healed him over that... just liked we believed," said one of the parishioners from the church I grew up in. I hated when they said that. As if dying from heart and kidney failure was a better thing because at least when they prayed for his Leukemia to go away, God had answered them about that. God was all, "Hey, I'll totally heal him from cancer but heart and kidney failure because of cancer treatments?.... get outta here!? I can't do that TOO." I hated their version of God.
I still do.
When I am in the most pain, I am in pain about this. I eat and eat and cry about this.
I got the call from my mom, "Jasmine, he has gone into a coma. We are life-flighting him home to St. Francis. He wanted to be home before he died. He signed a DNR." He was 18 and since he was no longer considered a juvenile my brother took his health and future into his own hands. Shortly after signing his orders he had to go into medically induced coma. There was too much pain. He had Graft Versus Host from the experimental transplant and his kidneys, liver, and heart were failing.
Praise God he didn't have cancer...right?
So when they flew him to Tulsa I came home from school immediately. I was in undergrad and still trying to be a normal person, in spite of that fact that the brother (that I had spent most of my childhood raising and looking after) was in Memphis at St. Jude Cancer Research Hospital. Paige and I packed up and headed to Tulsa. The hour drive was quiet. I knew what I'd find. I knew what I'd be asked to do. I had always been the mother, even to my mother, and I was afraid.
I walked up to my brother's bed. His funny and kind doctor, Doctor Kirkpatrick was there. He explained, "Isaiah is not well, Jasmine. Isaiah's liver is failing, his kidneys aren't functioning, and his heart is beating only by the medicine we are keeping on his heart." The doctor said, "he flatlined in the helicopter on the way over, and we resuscitated him."
"What?!" I asked, "he told me he signed a DNR." My mom looked down at the floor, "Jazz", she sputtered, "I couldn't let him go like that." So here we were, surrounding Isaiah and listening to what we needed to do. Even though he had made that clear before he closed his eyes for the last time.
His skin was yellow and bloated looking. The toxins were filling up his body. His beautiful strong hands were swollen and his fingers wouldn't bend. An effect of the medicine he was on was that he would open and close his eyes. When they were open they bulged out of their sockets, yellow and cloudy. He wasn't urinating and they were feeding him through a tube. His skin was spotchy from all the radiation treatment and Graft Versus Host Disease. I slept next to him during the day, I sang to him, I held his hand.
A day or two later, I can't remember, Isaiah' doctor consulted with us in a room off the side of the cancer ward. "Truly this is near impossible for me to say, but I need to tell you that Isaiah is not going to improve. His major organs have failed, he isn't a candidate for a kidney transplant, and his heart won't beat without these drugs." He looked into all of our eyes, "I will keep him on life support for as long as you want... I think, though, that knowing Isaiah we need to consider what kind of quality of life he wanted."
People came and went in a flurry. Friends. church family, biological family, and almost all of Isaiah's graduating high school class. Lydia, Isaiah's once kind of girlfriend/crush, brought us food. Finally Garrett, Mom, Paige, and I gathered in Isaiah's room. After another seizure we had to make a decision. My mom looked at me, "Jasmine. I can't tell them to do it. I can't say it. I don't want to be responsible for that decision...he is my son..." she melted into a shaking, crying, heaving, mess. They all looked to me. Paige sat quietly and thoughtful, per her usual form. "Jazz", she said, "Mom... we know he didn't want to be like this. He isn't even alive, they said his brain isn't functioning. You have to do something Mom." Mom melted again. It was like she dematerialized into a watery puddle. Rocking back and forth with tissue shoved to her face she repeated, "I can't. I can't. Jasmine you have to do it."
I felt buried between layers of pain and difficulty. I needed, Isaiah needed, a mother. She couldn't do that, though. She had never really known how to be a mother like that. I opened my bag and grabbed The Book of Common Prayer that I kept under my pillow at school.
I had stolen it from the Office of Christian Formation Prayer Room at John Brown University. I still have it, and when I don't have words- I pray the ones in the book.
I turned to the section that had prayer and response for dying people. I pushed the nurse call button.
"I would like you to turn his heart drip off, please." The nurse didn't even look at my mom, she was one of the nurses that started this journey with us. She had been with Isaiah and Dr. Kirkpatrick from the beginning. She knew that everyone always looked to me to help make the decisions. She punched the command into Isaiah's locked IV drip, took the wires off of him and left us in peace.
I kept my finger marked in the space in the book. A Prayer for Dying People. We all quietly watched for the next couple of hours as his heart rate slowly slowly slowly dropped... until it was nothing. When the line was finally flat I began to read the call and response. I read the priest's line and my family called out the response of the congregation. We prayed for Isaiah, we kissed him, and laid next to him- finally free from all those cords, pumps, and trappings. We said goodbye. I was the mother and I was the priest.
And that night... I walked out of that room as a child, as a sister, who was responsible for making the call on if her brother lived or died. I carry so much "what if shame". What if he could have miraculously recovered? What if I killed my brother.