Neil’s condition has deteriorated over the course of the day and he is now on an I.V. for his medications as he can no longer swallow them and is receiving subcutaneous fluids.
He is still at home.
This was all I had the energy to write. It was published not long before midnight, the first chance I had in the day to sit down and let people know he was still alive. I knew that if I didn’t write anything, I would not be the only one about to have a sleepless night.
I don’t remember the events of the day apart from pictures; I can see uniforms, equipment, and tears. I can hear those unwelcome words again ‘acceptance’ and ‘permission’. He was holding on, he didn’t want to draw that line in the sand, he wanted every last second of his life, he didn’t want to leave.
I took Oscar in to Neil’s room to say ‘night night’, not knowing it was the last time they would share a moment together. Even though I knew Oscar would have no memory of this time, I didn’t take him into Neil’s room the next day, I didn’t let him see his Daddy in distress. He was such a good little boy, he spent the next two days mainly with his Granny and slept through the nights with no fussing. He gave me the time to be with Neil. – Louise (2013)