My younger sister, Clare, and I have a complicated relationship. We never fought as kids, and we rarely argue now. It isn't that she drinks too much or disapproves of my lifestyle. None of our drama is like Jessica and Elizabeth's torrid lives in the Sweet Valley High books I read (cover to cover, in single sittings, on the floor of the bookstore) as a middle-schooler; we never liked the same boy or fought over clothes. I used to long for a sisterhood like that, and I wondered which one of us would have been like sweet Elizabeth and which one of us the wilder, more daring Jessica.
Until she was six, it seemed headed this way. Then, as if overnight -- literally, on the first day of first grade -- she started acting strangely. Her behavior was disobedient and her cognitive abilities were regressing. After countless hours with doctors, psychiatrists, therapists, Autism experts, teachers, and specialists from all over, the conclusion was an unsatisfyingly vague diagnosis of "Developmentally Delayed." I try to explain it to people in all sorts of ways because those two words barely scratch the surface of her and my family's struggles. I might say something along the lines of "It's like she's permanently six years old." But really, it's like she's permanently six years old and autistic-like, sometimes schizophrenic-like, often OCD-like and, especially when we were growing up, defiant and violent... like.
It's been years since Clare's expressed herself in a loud or disruptive meltdown like we used to experience when I was younger. Things have slowly become better for her, especially as research has improved and information about disabilities has become more available. She is still very much like a child: she doesn't understand the concept of time, and her handwriting is large and crooked, she loves the color pink. In many ways, it's like she's frozen in the first grade while the rest of the world grows older around her.
I have grown older, but there are parts of me still frozen in time, too. No matter what evidence there is to the contrary, I can't help feeling like I am stuck in adolescence when I'm with my sister, and like I'm going to be humiliated just as soon as I let my guard down. Anything can happen, and my anxiety is on hyper-alert trying to predict and prevent her discomfort and the discomfort of the entire population around us. I am a confident person who is way past worrying what people think of me in public... except when I'm with Clare. There were traumatic moments when I was growing up, and I know we were that weird family (and possibly worse), and I seem unable to shake the feeling that everyone is whispering about us still. Not unlike Jessica and Elizabeth Wakefield, I am permanently in high school when I'm with my sister.
These aren't politically correct feelings to admit about your special needs sister. I know that. But I also know that the shame-spiral-cycle that I find myself in is a part of who I am, and secrets don't help any cause. The more I tried to change my thinking, the more ashamed I felt for it. So, as my wedding day approached, I did what adults who swear that they are confident and way past worrying about what other people think don't do: I called my parents and told them that I didn't want my sister at my wedding.
My parents were loving, patient, and slightly baffled by my anxiety. They pointed out all the ways that Clare's behavior has improved, how long it had been since there had been a real "situation." I argued that no one could promise me that nothing bad would happen, that she'd surprised us before. They were patient, but they sounded tired as they listened to my tearful, immature rebuttals to every helpful suggestion. In the end, my call didn't make me feel less anxious, but it did make me feel sad and guilty. I already knew that Clare was excited for the wedding. It brought back a flood of memories that made me feel angry, and like parents just don't understand.
I buried my emotions with wedding planning and regular life tasks. In the months leading up to January 10th, I spray painted plastic animals, finished my graduate thesis, drove my daughter back and forth to dance class, and made my fiancￃﾩ do the entire seating chart because he said it would be easy. (For the record, he did it in one hour and it was perfect.) My sister called two times in those months. The first time was to tell me that she received the invitation in the mail. Her second call was to excitedly ask about the catering.
"Hi, Eve, it's your sister Clare. What are we having for dinner at the wedding, Eve?"
"Hi Clare. We're serving chicken."
"Eve, did you say we're going to have chicken for dinner at the wedding, Eve?
"Okay, Eve. I want to hang up now. I just wanted to know about dinner. Bye, Eve."
We learned a long ago not to try to force my sister to engage in anything longer than she wants to; her phone calls are generally very brief. It is one of the many adjustments we've made with Clare to prevent the unpleasant experiences she is capable of creating. It seems easy; don't try to force her into a longer conversation than she wants. In this way, we have agreed to meet Clare where she is comfortable, instead of trying to make her fit into the world that we define as "normal." It occurred to me that I was going to have to start accepting more of this flexibility, stop wanting something different that was never going to be, especially if I was going to enjoy my wedding, and enjoy my life, with my sister.
My wedding day came, and I applied new strategies to my fears instead of just silently wishing for a magic wand to change the facts of my family life. To address my own anxiety, I arranged to have dear friends meet me at the location before the ceremony for some meditation and affirmations. Proving that they do indeed understand, my parents arranged to have one of Clare's assistants come to the wedding with her, so that care and attention could be diversified if needed. With this extra person, Clare didn't have to endure any discomfort because she could leave the moment she wanted to, and my parents could enjoy the celebration without their presence completely controlled by her special needs. This is a luxury we haven't always experienced.
My concerns were almost completely unjustified; Clare had the time of her life at my wedding. We all agreed that we hadn't seen her that happy in... ever. In a moment I'll never forget, the DJ played her favorite song to open the dance floor, and she was front and center with me and my brother. We screamed and jumped and twirled to Madonna's "Like a Prayer," and I felt grateful that Clare was there, wearing pink of course. We were surrounded by family, all who know Clare and exactly how to hang out with her eccentric behavior. All of our friends who hadn't met her before were gentle, friendly, and patient, because it wasn't high school or my middle-school nightmares -- it was my wedding. She did eventually feel tired and irritable but, as arranged, she was able to leave on her own terms and watch TV in her hotel room with her assistant.
Clare is as much a part of me as my brother, as my parents; our experiences together, good and bad, have shaped who I am. That weird family is my only family, and Clare is a part of that as much as anyone else, and that's why I was glad she was at my wedding, no matter how she behaved. I wish I could wrap this story up with a proclamation that I will never worry about what anyone thinks of us ever again, or that I wouldn't have cared if there had been a meltdown after all. That's not really how I write, though, it's not exactly how I feel, and I don't want to discredit the struggles of special-needs families with an easy happy ending. However, I will remember my wedding day as a good moment for us, as a time when we all worked together to have our needs treated equally. It makes me feel hopeful about the sister I have and the kind of sisters we might be in the future.
Sweet Valley High is fiction, my sisterhood with Clare is real life, and dancing together can serve as a reminder to stay in the present with her, as is, one short phone call at a time, one chicken dinner at a time, one Madonna song at a time.
This essay originally appeared in A Practical Wedding in 2015.