Family, mutual respect, and love keep me pushing forward with ALS

Our first holiday since my tracheotomy. My wife ordered these shirts while I was in the ICU. Since then, these shirts have become a part of who we are. We now are selling them on our website. Love. (Photos courtesy of Brian Jeansonne)

This is Brian Jeansonne’s story:

I’m asked from time to time by others with ALS, is the trach worth it? The one thing I tell them is that they must know their reason for continuing to live. Because it’s not an easy life.

The boys hanging out in our awesome neighborhood in New Orleans.

My four boys and I are the Diamond Dogs. They are my reason, in addition to my daughter, Zoe Moon, 11, 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 years old.

I know that upon my death, my wife, Kris, will be crushed, but she’ll also be OK, because she’s Kristy 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 Jagger 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 whether to live the rest of my life on a machine, I counted five reasons. And every time the s*** 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 I” by Arcade Fire. This is how we raise our kids.

“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 the older boys were 2, 3, and 4, I thought, “One day they’ll all be teenagers.” Well, that happened quickly. Now I’m done raising my eldest 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 five will be.

I’ve always asked my family to take photos that represent an album cover. They don’t even argue anymore; it’s expected. We probably have thousands of these poses.

One of the absolute greatest things to come out of ALS is the quality of my relationships, particularly with my kids. I always wondered how we were going to navigate having a senior, junior, sophomore, and eighth grade boy at the same time. I wasn’t as worried about Zoe Moon being in fifth grade (though I should’ve had this on my radar, as little girls are a complete mystery to me). But the bond between me and my boys is stronger than anything I could have ever imagined. Somehow ALS allowed us the opportunity to bypass the rebellious phase, and instead enter into a sacred relationship of mutual respect and love during their teenage years. We don’t deal with the typical teenage boy fighting against everything we say. It’s crazy and it’s beautiful.

We are the Diamond Dogs. Woof.

Love.

In recognition of ALS Awareness Month in May, the ALS Community Spotlight campaign features a series of stories highlighting the real-life experiences of people affected by ALS, written in their own words. Follow us on Facebook and Instagram for more stories like this, using the hashtag #ALSSpotlight, or read the full series.