Hello, and much love to all who have followed this blog since it began. This is a post I had hoped to never have to write. There is no easy way to share the news I'm bringing.
On the morning of Wednesday July 22, 2020, our son Callum Robbins went into Johns Hopkins for a scheduled procedure, to replace the metal rods attached to his spine, which counteracted his severe scoliosis. These rods were designed to be extendable, to keep up with the growth of his spine, but earlier this year they had reached the limit of their extension and needed to be replaced altogether. Callum still had a lot of growing to do. This was a big procedure, a spinal surgery, but it's nothing we hadn't been through before. Just part of life with SMA. The hospital was such a familiar place to him - to all of us. Just before the bed was wheeled away down the corridor, we told him how much we loved him. Callum was joking with the nurses and doctors on his way back to the operating room.
In the middle of the procedure, without warning, Callum went into cardiac arrest. Nobody expected this, nobody could have predicted it. His doctors - who he had known well for years - worked heroically to turn things around, but they were unable to save him.
We lost our smart, funny, beautiful, one-of-a-kind boy on July 22.
We know he felt no pain, and he had no fear going in to this. He just went under anesthesia, and didn't come back.
After Cal's SMA diagnosis at age 7 months, and through the years since, we came to imagine that we had gained some wisdom, some deeper understanding about how life can change in an instant - but here we are, learning this lesson again in the most painful way imaginable. We are strong, and we are here for each other. We'll be OK. But what a fucked-up feeling - to say in the same breath that we know we'll be OK, and also that we'll never be OK again. Yet both these things are true.
Statistically, Cal wasn't supposed to have lived past the age of 3. He would have turned 15 on January 27, 2021. He had 14 and a half years, full of worthwhile struggle, joy, love and wonder. He was such a powerful personality, so smart and inquisitive and empathic, with such a good sense of humor and a strong sense of justice, it was easy to forget how profoundly weak he was physically. Even when we were doing almost everything for him on a practical level, from dressing, feeding and bathing him, to taking dictation on his homework, his independent spirit was front and center. It was real to everyone who ever met him. It became possible - easy - to imagine he'd defy the odds and live a long life, have a family and a career if he wanted those things, do really anything he'd set his mind to do. We would have been there at every step, helping him to live the life he wanted to live in any way we could. We worried about and struggled to prepare for a future in which he would have outlived us.
But as Callum's neurologist Tom Crawford said to us not long after his death, for those with SMA Type 1, everyday life is like walking through a minefield. There is always the potential to make it through, but at the same time every day brings profound risks. And though of course we always knew that, and his life depended on us keeping that in mind, maybe it's also necessary to let yourself lose sight of that Sword of Damocles hanging over you, just a little bit, just so you can just live. You have to be able to imagine a future.
As I write this I am surrounded by pictures of him, and his smile - radiant and knowing - his love of life, are there, plain to see, in all of them. His face had so many shades of wry humor; his eyebrows could be practically acrobatic when he was in a conversation, doing the expressive work for which able-bodied people use their hands. In school he was so good at advocating for himself, but also quick to speak up for other kids if he felt they were being treated unfairly. He more than held his own with the grown-ups. He was full of questions, and he could also be scathing when he felt his time was being wasted. We are so lucky and so grateful to have had the chance to be with him as he grew into a thoughtful, smart, funny, self-possessed young man - a wise, caring, insightful and genuinely curious person who truly never let the profound challenges of his life get him down. Our hearts break to know we won't make any more new memories with Cal - but the memories we have will nourish us for the rest of our lives.
Callum would sometimes say "I'm a weird kid, aren't I?" With a big smile. His smile illuminated his whole face. He loved computers, hacking culture, Miyazaki movies (Castle in the Sky was his favorite), Shin-Godzilla, Kamen Rider, Ultraman, and anime where people get inexplicably sent to another dimension and have to find their way back home. He loved anime in general, but he once said "you can't just go around telling people you love anime." He was trying to learn Japanese on Duolingo. One of his greatest life ambitions was to visit Japan - though it's doubtful anyone could have persuaded him to try the food if he got there. He loved food, but he was very picky about it and it was always hard to get him to try new things. Only in the last few months was he getting a little more open-minded about it.
He loved a good meme. He loved cats and dogs (especially Shiba Inu, thanks to doge memes). He loved Oversimplified YouTube videos. He was interested in history, and what motivates people to do the things they do. When he would learn about some historical (or contemporary) injustice, you could see him just short-circuit, like it was literally unbelievable. He took it personally. Racism, sexism, homophobia - all the biases and "othering" that people do - he would simply describe with contempt as "stupid." He would have been so happy to know that Biden and Harris won the election, and it also would have worried him that it wasn't a landslide.
The idea of the internet really captivated him and he was obsessed with online security and privacy - both how to maintain it and how to break through it. He loved (at least the idea of) the Dark Web, as the place online where people can be truly anonymous and political dissidents can send messages secretly.
He consistently beat me at chess, even though it was sometimes hard to be sure how much he actually enjoyed the game. He loved the Alien movies, Blade Runner, Christopher Nolan's Batman trilogy, Inception, School of Rock, Monty Python and the Holy Grail, Sherlock Holmes stories, Lemony Snicket, the Iron Giant, Halloween, The Thing, the Clone Wars series - though Star Wars, which had captivated his imagination in elementary school, had lately started to lose its appeal for him. His most vicious dismissal of anything in pop culture was "it's just a cash grab." He liked it when we would all read books together and discuss them at the breakfast table. He loved gaming, especially games with a story arc and unexpected twists, like Soma and Alien: Isolation. He loved Undertale. He liked anything "meta." He was a big fan of the Psych of Play series on YouTube. He enjoyed hanging out in gaming live-streams - but just a couple of them, where he had gotten to know the hosts and other regulars. That was his social circle.
He was a self-proclaimed Atheist but he was also interested in the idea of reincarnation and other worlds. He was a straight-A student but it was like pulling teeth to get him to do his homework. With the exception of a few classes, he did not particularly love school. But he really did love to learn, and he especially loved to dig in to things he cared about and learn about them on his own. He was interested in trying psychedelics, "not now - but when I'm older." He said he wanted one day to try every mind-altering experience and then write a book about them all. He loved Killing Joke, Idles, Nine Inch Nails, Mogwai, Apparat, Jon Hopkins, Cosmin TRG, Kode 9 and Space Ape, Kangding Ray, Fotocrime, Gojira, Bob Mould (he called American Crisis "Bob Mould's best song ever") - and over the top Japanese sci-fi pop-metal with sentimental choruses and insanely technical guitar solos (as long as it was fast). You could always tell if he liked any music that was playing, because he'd go quiet and get this intense look on his face - really listening.
He was always good for a deep conversation.
In his short life he traveled to England, he saw the English countryside and looked across London from the Millennium Wheel, he went to the top of the Empire State building, he met people from other countries, he spoke about his spinal surgeries at a conference of the FDA, he saw some rock shows and went on tour with Jawbox (though he preferred to watch Stranger Things in the dressing room), he saw the Baltimore Symphony Orchestra play, he went camping at Cape Henlopen and saw the Atlantic Ocean, he saw a Solar Eclipse - not least, he changed Janet and me forever in a thousand ways we'll always cherish.
We have always felt the understanding and support of our friends, our families, and our community ever since Cal was first diagnosed, and we can't overstate how much that has meant to us. Initially we only shared the news with close friends and family, and they have really been there for us, holding us up in this time. No expression is adequate to the gratitude we feel for that. We've kept this news off social media until now, because social media turns everything into a spectacle, somehow amplifying and minimizing at the same time. We didn't want to grieve so publicly. And also because Callum had such disdain for it (apart from his beloved Reddit) - he was forever trying to get us to quit Facebook, always for the most politically astute reasons.
But we also know that there are people out there - more than a few who we have never even met - who held Callum in their hearts and who were good enough to reach out to help him and us in the darkest hours after his diagnosis, who followed his story from a distance, and to whom his life and his progress had meaning, and they should hear this news too.
Callum was the greatest teacher either of us ever had. We miss him so much, every day, and we always will.
The present moment is all any of us can be sure of.
Please stay safe, and hold your loved ones close.
With love and gratitude
J and Janet
