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 759/131

Rhythm. A word and an idea I’ve always loved. Tonight, our rhythms feel very off. I’m listening to Benjamin breathe through an oxygen mask while he sleeps. His breaths are short, staccato, labored. He has a fever and his resting heart rate is entirely too high. He got a chest x-ray just before midnight, and… Continue Reading Day 759/131

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 742/114

Our intention was unmistakable. A clear path toward Benjamin’s perfect healing. Today we heard the words “no clear path,” and “imperfect options.” I realized today that we aren’t waiting for a path to appear before us. We are already on it. With every decision, every appointment, every blood draw, every heat pack, every vomit and every bath in the… Continue Reading Day 742/114

Day 741/113

Today was a really hard day. Benjamin woke up in pain, with his spleen hurting as badly as it did last night. I gave him a dose of morphine and helped him get as comfortable as possible. With the exception of a few hot baths, he didn’t leave our bed until early evening. Benjamin’s pain this… Continue Reading Day 741/113