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

Day 747/119

We’re back on the seventh floor. It’s where we need to be right now. I’ve felt terrified, angry, guilty, relieved, and grateful today. Sitting here to write this feels exhausting, but these are just words. Benjamin has shown me what true resilience is. The sky was cotton candy pink this morning as we left for… Continue Reading Day 747/119

Day 727/99

We are still waiting for the results of Benjamin’s bone marrow aspirate, and that’s just fine with me. Despite my best efforts, any time there was a knock at our door today, my heart jumped into my throat. My stomach was in knots. Once we heard that the pathologist wouldn’t be reviewing the results until… Continue Reading Day 727/99

Day 715/87

It’s 3:45am. Benjamin just vomited every bit of last night’s nourishment from his body. He has abdominal pain he can’t describe. I don’t know anymore if it’s a result of the medicine or if there is fluid trapped in his belly or if something else is wrong, like maybe those polyps have developed and we… Continue Reading Day 715/87