March 25, 2010

Twenty years

Undated: My father
Originally uploaded by Citizen Rob
My father died twenty years ago today.

It's strange to think about it now, especially as I hurriedly run around packing for a trip today. I used to be acutely aware of this date every year. For the first few years, I would actually make the drive out to Robert Lee, Texas, thenothing little West Texas town where he's buried. It's been a long time since I've been out there, though. After I moved away from Texas, I think in some ways I moved away from some of my grief as well. It's one of those boxes I never entirely unpacked once I returned.

Even now, I'm not sure that "grief" is the right word. We had a complicated relationship, to put it mildly. When he died, my father left a lot of family strife and unanswered questions; he suffered a massive heart aneurysm and was almost certainly dead before he hit the ground. We were all subsequently denied any sort of dramatic, confessional death bed scene, but honestly, I don't know that it would have been any easier if he'd lingered. My father wasn't very good at expressing his emotions, and he was especially bad at processing guilt. I suppose in some ways, I am, too.

I could write so much about my father, but I don't think I'm even going to try today. I'll simply say that I'm not sure that I miss him exactly, but I miss having the feeling and the possibility that there might be a day in the future where he and I could figure things out, and I might know for certain, in a way that I absolutely don't know now and maybe never have known in my life, whether or not my father loved me.

If I only get one thing right with Schuyler, it will be that she will never have to wonder such a thing.

March 19, 2010

Summer Monster Killers Club

As part of my fancy pants authority duties, I serve on the Board of Trustees for the Foundation for Children with Microcephaly. This makes more sense once you know that Microcephaly and Polymicrogyria are closely related neurological conditions. In fact, the Foundation's mission has been expanded to encompass other related disorders. Sort of a brain monster family reunion.

Anyway, as part of my work on the board, I've been sending out the following email. It occurred to me that the kind of sponsorship that the Foundation is looking for might be of interest to people reading here, rather than just corporations.

This is a good cause, a VERY good cause, and if it sounds like something you think you might be interested in, I hope you'll email me.

My name is Robert Rummel-Hudson, and I'm the author of Schuyler's Monster: A Father's Journey with His Wordless Daughter (St. Martin's Press, 2008). I'm also a member of the Board of Trustees for the Foundation for Children with Microcephaly, a nonprofit organization dedicated to helping children who have been diagnosed with Microcephaly (and other closely-related neurological disorders such as Lissencephaly and Polymicrogyria) to progress, thrive and succeed in life. The organization helps families acquire necessities and services for their children, and is devoted to raising awareness of these under-recognized disorders and participating in the research that may one day bring relief to these children.

Last summer, I was honored to speak on the subject of Augmentative and Alternative Communication at the 2nd Annual Microcephaly Convention. I've presented at a number of different disability and assistive technology conferences in the past several years, but none has affected me quite so deeply as this one. The families I met changed my perspective on my own work and left me filled with a renewed purpose. When I was asked to join the Board of Trustees, I accepted immediately.

The Microcephaly Convention has served as more than a place for families to meet and find support and empathy. Each summer, the leading doctors and researchers in the fields of neurological genetic disorders meet with these families, giving support and often providing answers and insights that have eluded them for years. It presents a unique opportunity for families of children with these neurological disorders. The Foundation for Children with Microcephaly is the only 501(c)(3) nonprofit organization in the United States dedicated to helping children and adults diagnosed with Microcephaly, Polymicrogyria, Lissencephaly and other related neurological disorders

As a nonprofit organization, the Foundation for Children with Microcephaly depends on the generosity of public, private and corporate contributions. I hope that you will recognize the importance of the work being done by the Foundation for Children with Microcephaly and will be interested in helping to sponsor this summer's convention. A financial sponsorship from your company will make a tremendous difference in the lives of families of children afflicted with these neurological disorders.

For the past two summers, this convention has been organized as a labor of love by families who themselves have searched for answers and support. In my own advocacy, I haven't seen anything quite like it, and I hope you'll choose to be a part of our work. Please take a look at the website ( to learn more about the Foundation.

Thank you for your time. I look forward to hearing from you, and I hope you'll choose to join our team.

Robert Rummel-Hudson
Trustee, Foundation for Children with Microcephaly

March 2, 2010

Mean: A Play in Two Acts

Originally uploaded by Citizen Rob

Julie picks up Schuyler from school. Schuyler is in a very sad mood, not making eye contact and seeming to be on the verge of tears.

Julie: Schuyler, what's wrong?

Schuyler: I'm sad.

Julie: Why are you sad?

Schuyler: Because you think I'm a loser.

Julie: No I don't! Schuyler, where did you hear that word?

Schuyler: Jackie called me a loser today.

(Jackie is a girl in Schuyler's class who has said things about her before, including the worst thing that you can say to Schuyler, who has the biggest heart in the entire world: "You're not my friend.")


Later, talking to Schuyler about the incident.

Rob: Did Jackie call you a loser at school?

Schuyler (sadly): Yeah.

Rob: You know you're not a loser, don't you?

Schuyler: Yes, Daddy.

Rob: We're going to Nashville in a couple of weeks so that a bunch of really smart people can hear all about you and how you use Pinkessa to talk. Do you think they want to come learn about you and meet you because they think you're a loser?

Schuyler: No.

Rob: No, they think you're the coolest, and so do I. So does anyone who matters. Do you think Jackie's opinion matters? It doesn't. She's just trying to be mean. Anyone can say mean things. Don't let it bother you next time.

Schuyler pauses and smiles, then she waves her hand in front of her face and laughs.

Rob: What? She smells?

Schuyler laughs and nods.

Rob: What does she smell like?

Schuyler points at her ass and laughs hard.

Rob: She smells like butt? Like a monkey butt?

Schuyler: Yeah!

We get Pinkessa so Schuyler can tell me, "Jackie smells like a monkey's butthole." I help her with the spelling. I'm not sure if this makes me a good or terrible father. Julie looks at me disapprovingly.

Julie: You're going to get her in trouble.

Rob: If she gets sent home for saying something, I'll punish her with ice cream.

Schuyler returns to school the next day, and for the rest of the week. She does not tell Jackie that she smells like a monkey's butthole. Sometimes I think she really does get when I'm kidding.



Julie takes Schuyler to see a movie that they both want to see, but which I think sounds like the kind of thing that Jack Bauer would show captive terrorists to tell him where the bomb is hidden, so I pass. While standing in line, Schuyler sees two girls, one of whom she knows from school. The mother of the girl also seems to know Schuyler, or at least who she is, and tries to engage her with complicated questions before chatting up Julie.

As they talk, Julie hears the girl from Schuyler's school talking to her friend, who attends a school in Frisco, not Plano.

Plano Girl (giggling to her friend): Watch this. (to Schuyler) Hey, Schuyler! Say something! Talk for us!

When Schuyler says something, the girl laughs at her. The Frisco girl doesn't laugh, to her credit, so the Plano girl says it again. This time the girl's mother hears her.

Plano Mom: That's enough of that!

Julie excuses herself and pulls Schuyler away. After they enter the theater, Schuyler sees her "friend" sitting a few rows down and tells Julie that she wants to sit with them.

Julie: No, Schuyler. They came to have an afternoon together, and they didn't invite us to join them. We don't invite ourselves to other people's get-togethers. That's not polite.

She neglects to mention the fact that the little girl is horrible.

Schuyler protests before slumping down in her seat in a full-blown sulk. Finally she looks at Julie with a frown.

Schuyler: You're mean.

Julie: I know, I'm sorry.

Julie doesn't tell Schuyler the truth, that she's not mean, but rather she's protecting her from a mean girl, another one, and just one of the many who will come along in the future. Schuyler is too innocent to recognize that the girl was being mean to her, and Julie would like to keep it that way forever.

Which is, of course, impossible. But we try. God knows we try, knowing that we'll lose one day. Because when a girl calls Schuyler a loser, it breaks her heart. But when a kid mocks Schuyler because of her monster and she doesn't even see it, and still thinks the girl is her friend, well, when that happens, ours are the hearts that break.

Schuyler will figure it out soon enough. And then there'll be broken hearts enough to go around. Plenty for everyone.