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 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 677/49

Benjamin’s day began at 5:30am, when our night nurse came to deaccess his port. He was sleepy but kind, and understood the plan. The nurse used a fast acting numbing cream and gave him fifteen minutes before coming back in to access. With the cream and dressing on his port, he went back to sleep.… Continue Reading Day 677/49

Day 671/43

Benji’s Blinatumomab began its slow drip at 5:12 this morning. Twenty hours in, and so far, so good. It seems like such a mundane phrase for such a big day. Mundane is just fine with me. Our sweet nurse woke me up, per request, before she hung the medicine. I put my hand on Benji’s… Continue Reading Day 671/43

Day 666/38

Huge ups and huge downs today. I’m choosing to focus on the ups as much as I can. The downs are starting to make me feel numb. I don’t want to feel numb. Gratitude is so much easier. Benjamin’s Make-a-Wish Foundation wish came true this morning. It took me so many months of his treatment… Continue Reading Day 666/38