While I'm writing this, Casey Morton is fb messaging me to say that his girlfriend is "trying to be cute, making heart-shaped pancakes for Valentine's Day." Somehow I'm not surprised...
I first called Casey one afternoon from my car, parked in a school parking lot, as I waited for my then four year old to get out of Speech Therapy. On Casey's end, TVs played in the background. "My son Ronin," Casey explained, "Watching two movies at once...multi-tasking." I laughed, but was anxious to cut to the chase.
I'd "met" Casey that morning when he'd emailed to support the "validity" of my opinions in a political argument I'd had with my International Mosaic Down syndrome Association list serv. I'd been grateful for his reassurance. My young son Anton has mosaic Down syndrome, a rare form, in which some cells are typical, others have an extra chromosome. Manifestations are unpredictable; most of what I know about Anton's prospects I've learned through list serv anecdotes. I can't afford to lose what Casey called my IMDSA "family" even when my liberal opinions about health care, Palin, and abortion may be at odds with other opinions expressed. Vulnerability forces us to forge bonds--even difficult ones. But I wasn't calling Casey to talk politics. Instead I wanted to know more about his email's closing line.
"I am a 29 year old father and self advocate with mosaic Down syndrome. Feel free to ask questions." A father? A self advocate? With my typically developing, fierce-minded first born daughter, I spend a lot of time fantasizing about the exciting careers she'll choose, but Anton is such a lover, it seems like my biggest wish for him is a partner. And children? I'm not sure this is even biologically possible for him, but watching him play Daddy to his baby-doll, I love to daydream. Of course Casey wouldn't be able answer all my questions, but he seemed a prime candidate for giving me insight into how my son might feel having MDS. "I've got a lot of questions," I told him.
Contrary to my misguided expectations, Casey's mosaic Down syndrome didn't make him sound any "different" from any one else. If anything, his carefully articulated words made him sound like an academic. In the first few minutes of our conversation, it also struck me that Casey's story sounded familiar--and not from living with my son.
"I spent a lot of time in my room in high school," Casey told me, "listening to music. I often felt like an outcast, in between groups." Okay been there, felt that. "How do you think your MDS makes you different from people without the diagnosis?" I asked point blank. "I don't know. Sometimes, I get confused...like in airports." I hear you. "I have trouble in Math." yeah yeah. But I didn't really hear Casey until I stopped seeking my own answers and started listening.
Casey had some thoughts about the stigma of having MDS. He recalled the difficulty of being shuttled back and forth between Regular Ed and Special Ed classrooms, for example. But he had a whole lot more to say about Shana, "the love of my life, the most soulful person I know," and about their children. Before I knew it, I forgot my angle. I was falling in love with Casey's love story:
Shana and Casey
Three and a half years ago I was very lonely. Friends at the time were just like, "what you gonna do today, Casey, get up and make coffee? I knew I had to do something more with myself. I was sick of feeling so sad.
I met Shana online. We talked and talked. We like to share what's on our minds. We both loved 80s Rock and Punk music...we were music fanatics and freaks. She works as a computation bid specialist...don't ask...every time I ask her what she does I get confused, the math is just so...
I was living in Salem, [OR] she was living in Roseburg. I knew, no matter what, I had to have my own adventure. I said, 'I'm coming over.' I was petrified about telling her [about my MDS]. I thought, 'this could be horrible, but at least I'm going with a smile."
I went over there and I just stayed. It had been about two weeks. We woke up--a weekend. She was working that day. I knew I had to tell her. I didn't know how to present it.
She looked at me like "huh? You look nothing like what you're describing." It was nerve-wracking. So I had her look it up. At that point her son Aiden [from a prior marriage] was going through stuff at school, they were beginning to suspect he had autism. She just has a lot of patience. I guess she already loved me. That didn't change.
Several years before meeting Shana, Casey had hit rock bottom. His jobs were unsatisfying, mostly just pay-the-bills kind of gigs. And he was confused about his mosaic Down syndrome which wasn't really part of his social identity. One day he woke up in the hospital after overdosing on pills.
All I remember is pain. I woke up completely hooked up and all I can see is white walls. Why am I still here? I looked at my hands, the interlocking star tattoo on each finger. That's why I lived ...for Ronin the Gemini.
A year after they met, Shana and Casey had their own biological son together, Ronin. He has "a little football body, looks just like his mother, very deep set blue eyes, blonde hair...I'm glad he didn't get my gigantic nose." Although Ronin has no disability, Casey soon realized that being a father meant advocating for both his children, Ronin and Aiden, and to do that he would have to advocate for himself. He joined the International Mosaic Down syndrome Association, became their Newsletter Editor and started a self-advocacy blog, Mirror Mysteries. Love hadn't so much transformed him as given him pride in who he already was.
After hearing Casey's story, I was curious about Shana. She has no disability. How did she feel about Casey's? When she learned about his MDS, had she gone through an "acceptance curve" similar to the one I went through after getting my son's diagnosis? Did other people's stereotypes bug her? In my interview with Shana, as with Casey, I had to give up my assumptions. She sees Casey's weaknesses but is all about his strengths.
He didn't seem like anyone else on My Space. He was thoughtful. His photo was black and white, he had long hair. We both liked Christian Roz, an old punk rock band. He was shy at first.
Casey and Shana began talking over the phone on her off-work hours.
It was really cool to talk to someone and not worry about anything else at first. I had never tried internet dating. This was casual. After talking for weeks, I invited him to visit. I met him at the bus station. I thought he was very cute. I ran up to him and gave him a big hug, like he was one of my best friends.
He ended up staying with me for two weeks. Aiden warmed up to him very easily. He cooked for me, made tacos, nachos. He's a good listener. And it kind of went fast. I said, "I'd like you to move in."
We were sitting in the living room, talking, Aiden was sleeping when he told me about his mosaic Down syndrome. I told him, 'if you live here, you need to work or go to school. I'm good at helping with resumes." He said okay. It didn't change anything. I grew up in a very accepting family.'
He was missing some life skills with budgeting and stuff. He didn't know how to drive. I taught him how to balance a checkbook. I've always been sensitive to people with disabilities...
Several weeks later, Casey's father helped him move in.
The thing is, before Casey I didn't have good experiences with men and I'd been three years without one. Casey has the good qualities of both females and males: sweet, compassionate, supportive. While he was waiting for his resumes to take off, he did the cooking, cleaning. He was very kind to Aiden. He planned a birthday party for Aiden...this made me so happy. Aiden would wear Casey's big boots; they both liked to goof around.
When I got pregnant with Ronin, I was scared but not about the baby having a disability. Aiden's Dad left me when I got pregnant with Aiden at 19. Casey was excited.We're both very selective of who we let into our lives but it has nothing to do with Casey's disability. We want positive people around us...kids get so much crap at school. I'll come home from work, the kids will jump on me, Casey will kiss me. Boom Boom Pow will be playing and we'll jump around, dance, cook, go out for walks.
Before he met me, he felt like if he told people about his mosaic Down syndrome they would dump him. A lot of people took advantage of his sweet nature. I'd also had bad experiences with friends. We both had that.
Casey and Shana's Family
And now they both have each other. Separately each describe the other as a "best friend" and "soul mate."
After hearing their love story, if I didn't have answers for Anton, I was more ready to listen to his questions:
I pick Anton up for a break from our "too long' walk; my son puts his cheek against mine, nuzzling. "Mom, you my girlfriend?" he asks. "No, Anton, I'm your Mama. But some day when you're a big boy you'll have a girlfriend." As if to make this happen faster, Anton squirms out of my arms. As we walk in silence, I watch his little swagger, so similar to his father's, and admire for the millionth time his long red-blonde hair with the little perma-dred in the back. Maybe some day a girlfriend will admire these traits--or others. I wonder if his girlfriend will have Down syndrome, or some other disability, or none. Whatever draws her to Anton, I knew she'll have special needs. We all do. That's probably what propels us to forget our differences and simply do it: love.
"Anton what kind of girlfriend do you want?"
"Umm." As an image comes to him he begins to jump up and down with excitement. "I need bouncy hair blonde girlfriend. Yeah!" [Really? Guess you're not the first.] Before I can comment, however, he is onto his own, more pressing matters..."Hmm, what my girlfriend's name?"