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 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 755/127

Benjamin’s procedures have all been completed safely. He slept comfortably through almost everything. Now, we wait, as we have done so many times before. I stayed awake through Benjamin’s first platelet transfusion at 2am, then we both slept as late as we possibly could. I peeked at his labs during shift change. They held steady with… Continue Reading Day 755/127

Day 753/125

It was still dark this morning when Benjamin woke up wincing. He said he’d had a bad dream. I asked him to tell me about it, he said he forgot, and went right back to sleep. I looked at the foggy sky, barely pink with the sunrise, and told myself if I could make out the Skyway,… Continue Reading Day 753/125

Day 711/83

Hope is such a strange and morphing creature. This morning, the fog was so thick outside our window that it masked the world below. Nothing else was visible. With the ethereal backdrop and the paper snowflakes hanging from our ceiling it felt like a true winter dawn in a much more northern place. When I… Continue Reading Day 711/83