Day 769/141

Since Benjamin’s diagnosis, we have asked for guidance to make decisions for his highest good. Today we were guided in a direction we did not expect, but one that could not have been more clear. We are staying on the seventh floor. Last night, Benjamin had a high fever and rapid pulse, and he was… Continue Reading Day 769/141

Day 766/138

The sky at shift change was a thick, foggy red. This is is a strange and confusing time. I am trying to accept all phases of this slow and peaceful transition, but it is so hard to swallow. We all slept in as late as we could this morning. We woke up needing a quiet… Continue Reading Day 766/138

Day 765/137

The parallels between birth and death continue to make themselves obvious. Both processes have a natural ebb and flow. When there is a deep breath, it is followed by a much needed exhale. When there is a moment of intense pain, it is followed by relaxation and normalcy. These slow waves allow for proper pause,… Continue Reading Day 765/137

Day 762/134

Energy can neither be created nor destroyed. ~First Law of Thermodynamics Benjamin, our brave, sparkly child, is dying. I realized today that I never actually believed this would happen. Not when Benjamin was diagnosed, not when we discovered his genetic predisposition, not when he relapsed, not when any of his multiple attempts at treatment failed,… Continue Reading Day 762/134

Day 761/133

We are settled into our new room on the fifth floor, the Pediatric Intensive Care Unit. It was scary to come here. But this is where we needed to be tonight, and after one of the longest days in recorded history, I feel like I can finally take a breath. Benjamin and I got very… Continue Reading Day 761/133