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.… Continue Reading Day 770/142

Day 768/140

“Hope is important because it can make the present moment less difficult to bear. If we believe that tomorrow will be better, we can bear a hardship today.” ~Thich Nhat Hanh Benjamin had such a beautiful window of clarity before we went to sleep last night that Michael and I decided in whispers to approach… Continue Reading Day 768/140

Day 767/139

Benjamin continues to do his brave work, and we continue to make the best decisions we can for him. This has always been true, of course, but we are accustomed to being informed by evidence. Now we are being informed by instinct and love alone. I was woken in the middle of the night when… Continue Reading Day 767/139

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