A Conversation with Robert Rummel-Hudson
author of Schuyler’s Monster
(St. Martin’s Press, 2008)
“Hi, we’re the Rummel-Hudsons. Nice to meet you.
Don’t mess with our cyborg daughter.”
…is one of the great lines from the book and evidence that your memoir (and your family) is far from the norm. How would you characterize Schuyler’s Monster?
It’s definitely a father’s story; I wouldn’t presume to tell Julie’s story, although she certainly has one and I’d love to read it one day. I’ve tried to tell this story with humor and a certain amount of irreverence, because that’s who I am. Our home is a rowdy place sometimes, but someone is always laughing, it seems.
In the end, I guess I’d characterize Schuyler’s Monster as a love story, one in which sometimes that love is all we had to keep us going and to take up Schuyler’s fight with her and for her. In the book, I describe that struggle as “fighting monsters with rubber swords”, the idea being that even when you know you’re up against something bigger than yourself, you do it, out of love, because what else can you do?
How has writing a book compared to your experience as a blogger?
There’s a significant difference between the very interior world of writing a book and the very public and immediate response to writing online. There’s something about that instant feedback of blogging that can grow addictive. I suspect the instant publication aspect of blogging probably helps to develop a better internal, “on the fly” editor. No first drafts in blogging; once it’s out there, that’s it.
I thought that writing a book about my experiences with Schuyler would be a simple matter of adapting the blog posts themselves, but I abandoned that idea early on. In writing the book, I was able to approach all the events of our lives afresh, with a more contemplative eye as to where they would lead. It was sometimes surprising to go back and read the things I’d said years ago, without a clue how things would eventually turn out.
The blog entries were invaluable to the process, however. It was as if I’d been taking detailed notes for seven years, for a book I didn’t even know I’d be writing.
In Schuyler’s Monster, you’re open about the toll Schuyler’s condition took on your marriage and yourself. Did you find it difficult to be so candid?
Before I did any work at all on Schuyler’s Monster, Julie and I discussed what such a book would need to include. We decided early on that if the book was going to be written at all, it had to be honest and show everything, our failures along with our successes. It was difficult to put that out there, sure, but at the same time, it was also a bit cathartic.
The number of marriages that fall apart and family members who suffer from depression under the strain and uncertainty of a disability in the family is staggering, but it’s not necessarily something that people want to talk about.
And yet when I write about some of these issues online, I hear from a lot of parents and spouses who have gone through the same things that we did. Because it doesn’t get talked about openly, I think a lot of people under those circumstances think that they are the only ones who stumble, and that every other parent of a special needs child is some sort of superdad or superwife or whatever.
I believe there’s a reason that most people don’t really want to read about happy families who always have the right answers. I don’t think most people can relate to that kid of studied perfection. I think we’re all overwhelmed by our lives from time to time, and as a writer, I wouldn’t be doing anyone any good by pretending otherwise.
Today, Schuyler communicates with the help of assistive technology. When you first looked into obtaining the device, now affectionately called “The Big Box of Words,” your insurance would not cover the $7,500 cost and Schuyler’s school could not afford it. Miraculously, you managed to raise over $10,000 dollars in 5 weeks through your website, almost all of it from people who had never met Schuyler and only knew her from your blog. Can you say a little bit more about what that was like?
It still amazes me, almost three years later. We’d already been shot down by our insurance carrier, who didn’t even recognize the new technology of assistive voice output as a treatment option, and social security also refused to help. The appeals process for both would take months, if not years, and so we hit upon the idea of doing an online fundraiser instead. We never expected the kind of response we received. But looking back on it now, I think two things were at work here.
One was the incredible power of the Internet and how it works on this viral level. The word got out just as soon as we started the page, and aside from creating some small graphics that people could put on their websites, we didn’t do much to promote it. We didn’t have time! We were still trying to work out a strategy for spreading the word when the whole thing really caught fire on its own. That kind of word of mouth exposure can’t be bought, and I don’t think it can even be predicted or directed very often. Schuyler’s story took on a life of its own very quickly.
The second thing at work here, I believe, was the simple generosity of everyday people in the world. With very few exceptions, most of the contributions to Schuyler’s fund were small ones, by regular people who were touched by her story but also intrigued by her potential for success if only given the opportunity. The unfairness and hardness of the world can be daunting, but when faced with individual stories, people respond. They might not be able to help everyone, but they can give one little girl a voice. And that’s how the world changes, one person at a time. It’s pretty remarkable to actually see that power of good in action.
Do you have a favorite scene or memory from Schuyler’s Monster?
Well, I loved revisiting the time of Julie’s pregnancy with Schuyler, when all my fears were of the usual “unprepared for fatherhood” variety. It was scary, but also exciting and with the anticipation of a normal happy ending, and so it was easy to sort of revel in that fear, like going on a roller coaster.
But I have to say, my favorite parts of the book are the ones that deal with Jasper, Schuyler’s poor, long-suffering teddy bear. He was purchased before she was born, with the intention of having him ride around in my car seat so that I could try to make peace with the name “Jasper,” which Julie really liked, possibly as a result of some kind of hormonal dementia brought on by pregnancy. When Schuyler rejected him as a baby, I never gave up on brokering some sort of reconciliation between them, but it took years for poor Jasper to be accepted.
By the way, I’m happy to report that she eventually came to accept and even love Jasper, and eventually insisted on us giving him a family, a white teddy bear named Jasmine and a little baby named Junior.
How has life been for Schuyler since you finished the book? How has it changed?
Schuyler’s Monster ended at a good spot, I think. If a book is made interesting by conflict and struggle, then Schuyler’s life in her class in Plano has been happily boring. She’s found a level of stability that she lacked in school until now, and her team of teachers and specialists understand her and her classmates and have opened up a world to those kids that I don’t think any of us imagined was possible even just a few years ago.
Complicating that, I guess, is the fact that she’s growing up quickly, into a strong-willed and independent little girl, and keeping up with that is a challenge. But it’s the same challenge that most parents face, and not one brought on by her monster, so it’s one we’re glad to take on. It’s a constant struggle for us, striking a careful balance between raising a daughter who is respectful and polite, while at the same time encouraging her independent streak, which is going to be key for her in the future.
Schuyler’s health has remained very good, with no sign of the seizures that were expected to accompany her condition. She’s very excited about the book and traveled to New York to meet my agent and the team at St. Martin’s Press. She even gave an interview with a Dallas magazine recently, answering questions on her speech device.
What are you hoping readers will take away from Schuyler’s Monster?
There are a lot of lessons that can be taken away from the book, I suppose. The least prepared person like me can step up to a monstrous challenge when the stakes are high enough, for example. Also, parents should always trust their instincts about their kids, even when faced with Capital-E Experts, because moms and dads know their own children best of all, and their vested interest in making the right choices for those kids is higher than any doctor’s or teacher’s.
But I guess the thing I wanted to get across in this book most of all is that such a person as Schuyler Noelle Hudson really did live in my world, and my life was changed and enriched because of her in ways that still have yet to be fully realized. Ultimately, I hope that readers will see how a little girl with no voice but with a positive spirit and a monster’s howl could make her way in this grand rough world, and if she can do it, then perhaps the rest of us trying to figure out our own way might just make it, too.
