Living Well with a Bad Diagnosis - Lung Disease

Saturday, July 11, 2015

Evening with our Son

It was one of those nights. Though the traffic was horrific and it took forever to drive a few blocks, we arrived at William's hotel in the heart of the city right on time. A minor miracle. He had been wandering the city all day and was just making his way back from the Hayes Valley area. Yes, he did have his most favorite burrito on the planet. It is served in a true dive on 6th and Market, the worst street in the city. He dreams about their burritos on the airplane flying into town. He had texted earlier that he didn't want a big dinner, so we cancelled our dinner reservation and made our way to the W Hotel and their fancy lounge for cocktails and conversation.

He was telling us about his roommate's mom. She hid that she was having problems with her lungs, finally saw a doctor, refused to quit smoking while on supplemental oxygen, was put on hospice and just died. Her daughters are still reeling.

I know it sounds strange but there are a couple of people in my ILD Support Group who are not honest with their children about their illness and very secretive about their care. I guess I just don't understand the reason. Do they feel vulnerable? Are they worried that they will be the center of too much attention? I just don't know. But, what was most disturbing to his roommate was that her mom didn't take care of herself.

It came up and I commented that I hoped that my illness was not even a thought in his everyday life. His reply really made my heart sing. He said that because I take care of myself, it relieves the stress of worrying about me. I have it under control. I am doing all I can do to live longer. That comment makes me want to eat even better and exercise even more!

He told us about this current tour and were thrilled to learned they have sold out an upcoming concert at Madison Square Garden. That is a big deal. The tickets sales around the world are going well. He also mentioned the reindeer hot dogs in Norway!

He also shared some current stresses and we thought he didn't need his parents to add to that stress. So, all of us made the decision not to go to the sound check tonight. We were able to see each other and talk for a few hours so Michael and I decided to let him focus on his work. We're staying home. He also told us he will be driving down in October. That is something to look forward to.

We walked back to his hotel and ran into several people from the tour, chatted and left a trio of them heading to our favorite tiki bar on Michael's recommendation. We put the top down on the Porsche, cranked up the heater and drove the down the coast with the stars over our heads.

It was so good to see him. It was so good to have a live (no phone or computer) conversations with him. It was so good to just be together.

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