Sound & Vision: J. Robbins of Jawbox on His Son Callum and What It Means to Be a Dad

Best known for his work with Jawbox, J. Robbins has been active in the D.C. hardcore scene for decades. In addition to his own work, he's produced albums for bands like The Dismemberment Plan, Jets to Brazil, The Promise Ring, Jawbreaker, and many more. Earlier this year, he released his first ever solo album, titled Un-Becoming, via Dischord Records.

But even more impressive than all that is his role as a father to Callum Robbins, who, as a young child, was diagnosed with spinal muscular atrophy, an incurable nerve disorder. In this very special interview, KEXP Morning Show Producer Owen Murphy talks to Robbins about his experiences as a dad. 

KEXP: What does being a father means to you? 

J. Robbins: Dude. [Laughs] 

I'm a dad. It means a lot to me to be a dad. 

Yeah, it remains an impossible question to answer really. It's an amazing rebirth. It's an opportunity to experience a kind of connectedness that exists in no other way. It's terrifying. It's magical. I mean, even goofy stuff like when my son was 10 years old and we watched the 1967 Planet Of The Apes and then it gets to the end of the movie and you see the Statue of Liberty and like the look on his face and he goes like, Whoa. I mean, I can't. I can't. It's inexpressible. 

Do you mind telling people what disorder your son has, what that is, and what life is like for him and for you? 

My son has spinal muscular atrophy. It's a neuromuscular disorder. It's one of the most common of the rarer neurological disorders but basically the upshot of this condition is that he has a mutation which prevents his body from producing a certain protein that enables his brain to communicate with his major muscle groups. This disease, it presents in all sorts of different ways so there are some people who get it as they get a little older and it's similar to ALS although the progression is different. It's a degenerative neurological condition but some people live into their 40s and 50s, even with the most severe form of this condition. But the majority of people who are diagnosed at a very young age — like my son was diagnosed at six months — that's SMA Type 1 and most kids with that diagnosis don't live past the age of 2 and it's mostly because they get pneumonia. Like they'll get a cold just like every other kid gets millions of colds, but for a kid with SMA, they don't have a developed enough cough. They can't get rid of stuff. So it turns into pneumonia and that's usually the cause of death. For him, I mean he's had pneumonia several times in his life and he's been hospitalized for weeks at a time, but right now, where he's at is, you know, even though he is wheelchair bound and he's immobile and he requires a lot of assistive tech to do stuff — he can't hold a pencil to write or anything like that, but he can operate a computer with a track ball mouse and special lightweight switches suited for him — he's actually in — I mean, knock on wood — right now, he's been in really really good shape for a long time so even though he's immobile he seems pretty hardy and his mind is pretty incredible. So he's a great kid. You know, he's a great, great person. Especially now that he's getting to that golden age like maybe ten, eleven, twelve, thirteen, where you can really start going deep with your kids about stuff, like really talking about content. "What is this movie about?" Just getting philosophical and stuff. He's awesome, he's a great one for a deep conversation. But yes, that's basically the story with Callum. We're really lucky because we live very close to Johns Hopkins. There's a great neurology department there. He's had a great pediatric neurologist who's an SMA specialist since his diagnosis basically so we've got a really good team with him. And it's never a dull moment really. 

...you love your child so you're going to do whatever you can do to make the best possible outcome for this person that you brought into the world.

What do you say to parents who maybe have newborns or young kids who are diagnosed with spinal muscular atrophy? What advice do you give? 

I mean, when he was first diagnosed, those first couple of years of dealing with this... I struggle to describe what that was like for Janet [Morgan, his wife] and myself because, you know, your world is completely turned upside down. 

But the one thing that... I'm going to try and not get too choked up about this but basically, you know, the one thing that you have is that you love your child so you're going to do whatever you can do to make the best possible outcome for this person that you brought into the world. I think that's what everybody has in common. I mean, there's so many things that come along with this circumstance like realizing that death and disability are normal. They're terrifying, but this is part of human life, so you have to just get on with it, like you have to put one foot in front of the other because there is no alternative. And I think that's what the other people that I've met who have been in a similar circumstance with their kids have come to. Every time, it's just what are you going to do? Give up? Well, no frankly that's not on the list of available options.

Luckily, there's a great community of support around SMA, like SMA families. There are a lot of ways for people to connect and kind of support each other and just listen. That's a huge thing that people need, but I don't know what else I would say. I know a lot of times for us, just knowing that there are other people who are going through something similar and having them lend an ear, that's hugely helpful. And the other thing that's really helpful too is connecting or even being aware of adults who got an SMA diagnosis when they were very young and actually went on and not only survived but actually thrived and kicked ass at whatever they're doing. So it's not just one thing. There's always a way to look at it that you'll find a way forward. 

I think, in our situation with Callum, amazing things happened. It was actually Kim [Coletta] and Bill [Barbot, bandmates in Jawbox and owners of DeSoto Records] who started a fundraising effort when Callum got his diagnosis. We had no idea what kind of institutional support there would be or if there would be any from anywhere. And the first thing that you learn about SMA is that this is a disease that is going to bankrupt you. It's going to destroy you. Because he has to have a wheelchair. I mean, we have a hospital's worth of gear in our house now to do respiratory therapies and all the rest of it. And we've had to learn by blundering through it. Sometimes we've had excellent guidance but when he first got his diagnosis, a huge thing that helped us get through it was the fact that people really came to our aid. People did benefit shows and just expressed support in all these ways. Actually, the other thing in a practical sense, it was great because when he first got his diagnosis, it was not from our great neurologist that we work with now but it was from another neurologist who worked with our pediatrician and this guy was basically just like, your son has SMA, there's nothing you can do, just take him home and love him because he's not long for this world. There's nothing we can do. I mean, it was really brutal. 

And so we were determined not to accept that answer. And we started looking into all sorts of alternative medicine approaches and we had sort of found through connections and friends of friends and there were a bunch of things that we tried to do to improve Callum's chances that were well outside the world of conventional medicine and we wouldn't have been able to afford to do any of that except that we had had the support of people who did fundraisers and stuff. And I think some of what we did actually was good for his... you know, it's a whole other discussion in the world of outside of conventional medicine where you go into some extremely gray areas and the next thing you know you're in the land of quackery and you've got to really like do a quick 180 and get out of there. But I think that some of what we did for him in that weird journey that we took was definitely positive and it helped him be hardier in the long run and we wouldn't have been able to do any of that or or even try any of the stuff you know at least we felt like well here's something we can hold on to like. You know they tell us that there is no hope and there's nothing we can do. But here's but maybe we can do this. You know and we're going to do it. And the fact that we did it was huge in being able to keep us going even if we didn't know if anything was going to pan out for him or not. But it's like we we're doing something. This is a thing and a over there they say it's not going to work and there's no point but, we've got to do something and none of that would have been possible... even just like spiritually, which that's a loaded word because we're not religious. That's a whole other subject. But basically there is you know energetically, spiritually, whatever you want to say the fact that we had this kind of community around us. Even if it's just somebody dropping an email you know or like commenting on his blog or whatever. That was huge. 

Well, the music community is its own church in some way. I'm not religious either but it sure feels like church and community and spirituality in whatever... you know, I can't even explain it. 

Yeah. Right. It's an energetic thing. It's like, people are putting their energy to make something happen that wasn't there before and they're all in and that's giving them something back, like their essence is in it and their essence is coming from it. You know, that's important. What else is there to do? Just like watch fucking TV? Like, no. [ laughs ] 

Normality encompasses all these things that include extremely difficult, tragic shit and it has to all be there.

That sounds terrible. Thanks for sharing so much about your life and Callum. I think it's important.

Thanks for asking. I do feel like there's a tendency to not want to talk about this kind of stuff. You know, disease and disability, it's not in the average person's mind. It's something that is like... really other. You know, they want it to be apart from their human experience. But you know what, tough luck. Normality encompasses all these things that include extremely difficult, tragic shit and it has to all be there. It has to all be in your view.

Sound & Vision airs Saturday mornings at 7 AM PST. Hosted by Emily Fox and John Richards, the show "uses interviews, artistry, commentary, insight, and conversation to that tell broader stories through music, and illustrate why music and art matter."