on Benjamin is beginning his bravest work, and we have the honor of supporting him through it. Today was sweet and sad and slow and steady. Benjamin was surrounded by his family–parents, brother, aunts, grandmothers, cousins. We were all uplifted by the incredible force of our community, who fed us lunch and dinner, and who sent… Continue Reading Day 763/135
on 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
on 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
on The construction crew of the new hospital research building worked all night long last night, pouring the concrete slab on the top floor. Every time Benjamin woke up to urinate, or something beeped, or someone came in to check vitals, I’d glance outside and see men in hardhats dangling from harnesses or climbing up ladders,… Continue Reading Day 756/128
on Last night was a long one. Benjamin’s fever spiked again, his heart rate was too fast, and his oxygen was too low. I couldn’t keep my eyes off the monitors. Benjamin’s heart rate had been high since we were admitted yesterday. I assumed it would regulate after his red blood transfusion; turns out the fever… Continue Reading Day 52