Benjamin is beginning his bravest work, and we have the honor of supporting him through it. Today was sweet and sad and slow and steady. Benjamin was surrounded by his family–parents, brother, aunts, grandmothers, cousins. We were all uplifted by the incredible force of our community, who fed us lunch and dinner, and who sent constant love and prayers. So many people love our boy. This is so hard.
I was updating Benjamin’s Beads of Courage when the Palliative Care team came in. They had some good ideas for making these next few days a little less invasive–decrease the frequency of vitals checks, eliminate weekend antibiotic pills, remove Benjamin’s feeding tube while he’s on TPN, etc. Each suggestion made sense, and each one made me so deeply sad.
This morning’s labs threatened to give me false hope. Benjamin’s white count was cut in half, and he wouldn’t need any transfusions today. The steroids are keeping his counts at bay but the leukemia infiltration is too great to reverse. The carbon dioxide in Benjamin’s blood is rising. This became very apparent today, as Benjamin grew sleepier and more incoherent. His tiredness is deep and powerful. At one point he asked me if he was getting propofol, the anesthesia he has had for each lumbar puncture. Another time he asked me to look out the window at all the people holding signs (there weren’t any, of course, we’re on the seventh floor). He uttered many other dreamlike phrases today, but they were interspersed with moments of lucidity and pure sweetness. We are so lucky to spend these days together with our boy, living in the exact present, with only one monumental task to do.
We’ve seen other small changes today as well. Benjamin has been moving his hands in his sleep, as though he is reaching for something that isn’t there. He has also developed an occasional cough, but it sounds nothing like the cough that accompanied Banyan’s cold last week. It sounds much lower and more guttural.
We asked Benjamin if he would like to leave his feeding tube in place or remove it. He chose removal. As with every procedure he has endured, he summoned up the courage and bravery to sit through something extremely uncomfortable. Benjamin cried after the tube was pulled out. But he got the job done, and less than an hour later, he was very glad he did. No more formula. I couldn’t help thinking that the Liquid Hope may be the last meal I’ll ever feed him.
Twice today, Benjamin mentioned home. Until then Michael and I were firmly in agreement about staying here. But if Benjamin’s mentions escalate into requests, we owe it to him to consider hospice in Sarasota, and a transport back to our house. I believe we will stay right here on the seventh floor.
After shift change tonight, one of our favorite nurses came by to see Benjamin. I followed her back into the hall when she left our room. We had a powerful conversation. I asked her if she saw any signs in Benji that might help us estimate a timeline. She said that every child is different, and they transition in their own time, when they are ready. Of course. I’ve been thinking so much about the parallels between birth and death, yet this one escaped me completely. Maybe this impending transition has something to do with Benjamin’s thoughts of going home.
I am not afraid of the task at hand. I know I can help Benjamin feel loved and peaceful and empowered and free. I am, however, petrified of the task that follows. How we are going to live without this wonderful boy is absolutely beyond me.