I have recently had two different people who I don’t know reach out to me about my experience with living on a ventilator, as their ALS progression is leading them to have to make this decision soon. The one thing I tell them is that they must know their reason for continuing to live because it’s not an easy life.
We are the Diamond Dogs, and this is my reason, in addition to Zoe Moon, who will be inducted on her 13th birthday. We get together once a week to talk about our lives. We talk, and we listen. We are 14, 16, 17, 18, and 46.
I know upon my death, Kris will be crushed, but she will also be okay because she is Kristy Fucking Jeansonne. I have spent the last 22 years of my life with this girl, 20 of those married.
They have been the best 22 years of my life. I would give anything to grow old with her, but if life and Mick have taught me anything, it’s that you can’t always get what you want, but if you try sometimes, you just might find, you get what you need.
So, when it was time to decide about living the rest of my life on a machine, I counted 5 reasons. And every time the shit hits the fan, and I think I can’t do it, I whisper to myself, Micah, Jonah, Nate, Lucas, Zoe Moon. And I keep going.
Our Diamond Dogs song is "Unconditional 1" by Arcade Fire. This is how we raise our kids. (Will post the music video in the next post).
“A lifetime of skinned knees, And heartbreak comes so easy, But a life without pain would be boring, And if you feel it, it’s fine, I give you everything that’s mine, I give you my heart and my precious time.”
I remember when we brought Lucas home from the hospital, and they were 0, 2, 3 & 4, thinking, one day they will all be teenagers. Well, that happened quickly. And now I’m done raising Micah, and I’m still raising the others. But I’m not done imparting myself to any of them. If you think Kris and I are a force to be reckoned with, just wait to see who these 5 will be.
We are the Diamond Dogs. Woof.
Love.