Day 770/142


Comments will be disabled for the foreseeable future as our family focuses on Benjamin’s peaceful passage. Your love and prayers are acutely felt and deeply appreciated.

There has been another shift of energy in this room. We feel it, our families feel it, our nurses feel it, our community feels it. Mostly, Benjamin feels it. We are turning our attention deeply inward, focusing on the slow, still moments we have together as a physical family of four.

Yesterday’s increase in pain medicine was effective. Benjamin had a much better night last night than the two preceding it, free from fever and with no unpleasant bathroom episodes. For the second night in a row, Michael lay with Benji for the first few hours before handing the bed over to me. When Benji woke to take a hot bath at 2:30 am, he hugged his daddy and said, barely audibly, I love you so much.

Benji’s hemoglobin continues its slow decline, sending less oxygen to his organs each day. It is making him very sleepy, and it is a struggle for him to articulate his thoughts. Many of his phrases are dreamlike and incoherent, which will then cause him frustration; he has said several times today, I keep talking to myself. Why do I keep talking to myself? His body is weak, he is wearing his oxygen mask again full time, and his motor skills are diminishing. He requested cake pops this morning; he could hardly hold them, and he could hardly chew, but he took great pleasure in the few bites he was able to enjoy.

Benjamin only spoke twice during his cake pop nirvana. First he said, “This is so good, you should try some.” Then he said, “I feel sorry for Grandma Ruth.” We asked why, and he said that she was in a room no bigger than ours, but she had to share it with a roommate (he was remembering a different facility than the one she lives in now). Both communications were indicative of his deep sense of empathy. This boy constantly makes me swell with pride.

Yesterday’s platelet transfusion only bumped Benjamin’s count to 4,000. He received another transfusion today. As the cells were dripping into his veins, his chest started to rattle. He is definitely having a more difficult time processing fluids than he was a few days ago. His ankles are swollen and he is urinating less frequently, yet he is still quite thirsty, begging for water or his root beer each time he wakes up, trying hard to navigate the bendy straw through the holes in his oxygen mask.

Benji’s pain is much better managed today, but his low hemoglobin, disorientation and general malaise caused him to wake up a little teary a few times. Michael, Banyan and I alternated occupation of the spot next to him in bed. At one point I was holding Benjamin’s hand on my right and Banyan’s on my left, so thankful for such a simple moment with both of my sons. The next time Benji woke up, he hugged me, gave me the sweetest kiss of my life, and gifted me the same words he gave Michael this morning. I love you so much. 

Other words spoken in this room today were far less beautiful, like funeral home and anatomical gift. We are trying to stay present while taking care of the things that must be done so that this transition is as easy as possible. We also want to honor the unbelievable bravery Benjamin has exhibited these last two years. One of our fervent wishes is to support the research efforts of Dr. Oshrine and his team as the new Research and Education Building is being completed right outside our window. A representative from the All Children’s Hospital Foundation came to see us today and began the conversation about how this might work. This feels very right. We will be sharing these opportunities in the coming days.

Banyan continues to be wonderfully astute, supportive and kind. When Benjamin mumbled incoherently about a video game they played together, Banyan answered emphatically, “Yeah buddy! That would be a good idea!” even though I know he didn’t understand his brother’s words. He jumped up quickly when Benjamin needed to get to the bathroom, trying to help with the urinal or the heat packs or a fresh cup of ice. He feels the shift in energy too, but he helps bring balance with the pure joy he infuses here. I am certain Benjamin can feel it too.

Our families have left the seventh floor. They have all been so incredibly supportive. Now their support is shifting as they honor the intimacy of the task ahead of us. Three of Benjamin’s grandparents and both of his cousins left us on Sunday. Today we watched as his grandmother and both of his aunts kissed his sweet head, trying to hold their tears while infusing a lifetime into one exchange of energy. He is surrounded by such pure, powerful love. It transcends any physical limitations he is preparing to overcome.