Here is the latest update on Stephen:
The Most Difficult Conversation
Today has been another quiet day. Last night however, we noticed Stephen has started some irregular breathing. Amber and I each took a turn laying with him, listening and feeling his chest for movement. He would take about 3 breaths and then would stop for about 30 seconds or so. We were worried about it, but he made it through the night and has been stable all day.
We got a shower chair for him and bathed him on it this morning. I already knew the shape he was in, but taking off all his clothes and helping him into the shower was heart-stopping. He looks exactly like many of the photos I've seen of kids in concentration camps or dying from famine. You can see each one of his ribs. His hips jut out on both sides and he does not have a bottom anymore. Instead, his little bony tailbone is readily seen as the most prominent feature to sit on. I'm sorry to be so graphic, but we can hardly believe his transformation to this form over the last few weeks.
Today we had the pleasure of watching 2 sessions of the spring General Conference broadcast from our church headquarters in Salt Lake City. Two times a year the leadership of the church speaks to its members across the world on gospel subjects. It is a time to be inspired and renewed with their faith promoting talks.
One talk specifically stood out to us. It was a talk by Elder Ronald A. Rasband on children who suffer from serious illness. It was meant just for us.
This afternoon when Stephen woke up Amber and I stumbled into another opportunity to talk to him about death and dying. It was a conversation that I never ever thought I would be in a position to have.
He now understands that the reason his body doesn't want to eat is because he is not going to get better from his cancer... and his body knows it. He was alert and as we asked him questions and answered them his eyes teared up.
He says he wants to see Heavenly Father and Jesus and thinks that would be very nice, but as we expected, he is afraid to be separated from us. We explained to him that it might be like when he used to leave for school. He would say goodbye, kiss and hug us. But then he would get on the bus and be whisked off to school where he would learn new things, meet new people and have lots of fun. He would not miss us, and before he knew it he'd be with us again. We told him it would be kind of like that. He still did not like the idea.
But he is clear on one thing. He does not want to be sick anymore. He is tired of it and we told him that when he chooses to go, he will feel all better again. It is okay to go. It is his choice.
His tears told us he is not ready yet. All I could end up saying to him at the end of our conversation was that when he decided he was ready, all he would have to do is pray to Heavenly Father and let him know. Heavenly Father would take care of the rest.