(Editor’s note: April is Autism Awareness Month and National Siblings Day was celebrated last week. In conjunction with those two events, below is an essay written by Kathryn Halloran of Lynn when she was a sophomore in high school, about her relationship with her sister, Martha, who was born when Kathryn was 7.)
“Would you rather be an only child?” I hear that question in my mind often. The answer is always a concrete, absolute no, but I can’t help but think that other people who know my sister have wanted to ask me this question, out of curiosity or just plain concern. So, I’ll ask you this: Would you rather be an only child, or not be able to talk to your sibling again? Would you rather be an only child, or be looked down upon by others for the way your sibling behaves? Would you rather be an only child, or face a life full of curious expressions looking at you? What would you say? Would you rather be an only child?
Most people would try to be noble and say what they believe to be the morally righteous answer, like an answer that you pass into your religion teacher, “No, of course not.” But, take into account the things you would face. You’d get to see every side of everyone. That’s what Martha does to people. She brings out every shred of their personality that you may or may not want to see. You’d see whether they’re accepting or disapproving, confused or just plain ignorant.
No one will ever know the exact position that I’m in, the position I was thrown into 18 months after the day she was born. And no one will ever know the position that my sister is in, not even me. So, I want you to know that this story isn’t a sad one. I’m not looking for sympathy, or for people to be uncomfortable around me. The main character in this story isn’t even me, these are just the events seen through my 7-year-old eyes surrounding the first years of my sister’s life, and how a 10-year-old girl who can’t communicate her thoughts can continue to teach a 16-year-old girl new lessons every day.
***
Martha was born on May 5, 1999, in the late afternoon. I remember every detail about that day. I was out in the yard playing with my first best friend, Jonathan. We were pretending we were Power Rangers on our favorite rock, and I was fighting with him because I never wanted to be the pink one. I wanted to be the red one, just like him. I didn’t want to be different. My grandmother came outside telling me that I had a new baby sister. And let me tell you, I was probably more excited than my mother. I had always nagged my parents for a sibling, and I even remember jumping on the couches hysterically when my mom told me that she was pregnant. So, in my euphoria, I forgot about our game and ran for the car. My grandmother wouldn’t let me go until I ate my mac and cheese, which I eventually gave to my dog in an attempt to get out of the house faster.
We finally got into the car, and I remembered that I hadn’t even asked her name yet. “A girl? A girl? What’s her name?” I asked, frantically. I’m surprised that my grandmother could even understand what I was saying, considering how fast I was talking. I couldn’t get the words out fast enough. But, I finally got my answer, “Martha Lucy.” All I remember is how I made a mental note to talk to my mom about changing her name, because it was not what we had discussed.
I walked into the hospital room to see my parents calling their friends to tell them about their new child. I immediately lunged for Martha, begging my mom to hold her. After many careful warnings from my parents, I finally got to hold my new little sister. She cried. But things turned around when I started talking to her. As soon as I talked to her as if she were a completely verbal adult, she grabbed my thumb and squeezed hard. Through my painful grimace, I managed to get out the phrase, “This one’s gonna be a talker, mom.” It kind of hurt, and that was the moment that I knew that Martha was going to be my best friend.
***
Have you ever loved someone so much that you couldn’t begin to put it into words? I have. That’s how I felt about Martha the second after she squeezed my thumb in that hospital. We brought her home, got her settled and prepared her for life as a member of our family. The first few months were a blissful disaster, and the whole family was happy amidst the chaos that comes with a newborn baby. I had never been overly close with someone in my seven years of life, but I immediately formed an intangible, unbreakable bond with Martha. When she got hurt and cried, I had to go to my room and cry, too. When she woke me up in the middle of the night with her shrieks, I simply stayed up with her until she went back to sleep. When she swiped our parents’ attention for days at a time, I hardly cared.
Martha babbled and squealed, as all newborns do, but other parts of her personality were different. She loved books, and not just picture books designed for babies. Martha would hold any kids’ book you gave her and just flip the pages, unaware of what any of the words on the page actually said. I knew that one day we would share the stories we read in books, recommending them to one another; heck, I had practically been planning out her maid-of-honor dress at my wedding.
Life went on, and Martha transformed from a newborn to an infant in the blink of an eye. She had acquired a larger vocabulary, and was familiar with common, two-syllable words such as “Mama” and “Kaka” (her version of my name). I tried to teach her new words every chance I got, wracking my 8-year-old brain for syllables to repeat to her every day. I wanted the best for Martha, and as an 8-year-old I assumed that the key to the best was knowledge; that’s what I wanted for my sister.
I can’t specifically pinpoint a moment when it happened, or even a day or week. All I can muster from my perception eight years later is the big picture and some of the most random details. That happens when you try to remember, you may forget important events, but you remember the most unimportant details. The reason I carry these specific memories in this story with me is because each and every one of them has had an incredible impact on my life. Every detail has taken disguise and crawled into the corner of my brain where I keep vital information like my name and address, or to the foggy part of my head where the dreams that I can’t forget find a home.
The closest I can get to having a starting point to the journey of her diagnosis is the faded memory of being in her room with my mom. Martha was holding a black, white, and red book, flipping the pages, and my mom commented that she hadn’t heard her use her words in a while. Of course, Martha could do no wrong in my eyes, and even though I had noticed the decline of her speech, I just figured that she didn’t feel like talking; everyone gets like that sometimes.
I didn’t know exactly what was going on, but as the weeks passed I felt an increasing aura of panic in my house. It wasn’t anything like my mom crying or my dad running around the house leaving a trail of chaos behind him. It was just a general feeling, like an imminent cloud that had lowered itself down into the house. This panic wasn’t the type that comes with a natural disaster or shocking catastrophe. This panic was the type concealed with hushed conversations and worried glances being exchanged. Looking back on it, this type of panic might even be worse.
While I was busy being a typical second-grader, I let my hawk-like guardianship over Martha slip the slightest bit. This could be because of the hurricane of doctor’s appointments that led to Martha and either my mom or my dad not being around as much, or the fact that I wanted to distance myself from the cloud in my house that I could practically touch.
My mom used to be a basketball coach, right up until the year she had Martha. I grew up going to her team’s games and loved the atmosphere of a “family” of girls playing their hearts out on the court. In fact, I practically shot a basketball before I could support myself on my own two feet. My mom, being the dedicated coach that she was, had filled her bookshelf in her room with basketball books about coaching, technique, rules, you name it, over the years. I always loved going up to the bookshelf and counting the number of books that didn’t pertain to basketball. Every time, I arrived at the number four — three of these were dusty high school and college yearbooks — and the other one was a red velvet book about Fenway Park.
When my mom became pregnant with Martha, some pregnancy books naturally went on those shelves, but it wasn’t until about a year-and-a-half into Martha’s life that I became suspicious. All of a sudden, I noticed that the basketball books on my mom’s bookshelf were accompanied by mental disorder books, books about kids who were left out socially, and books about autism. What was that?
When the bookshelf was bursting at the seams with all of these books, the ones about basketball started disappearing altogether, only to be replaced with more of these new books. I look back on that bookshelf now as the conflict my mother had to face in having Martha, and the love that she had given up, only to be replaced by a new love.
***
I don’t know when my parents decided to tell me the news. Maybe it was when they could get through it without showing that they were hurt, maybe it was when they had gathered enough information to answer my bombardment of questions, or maybe they just waited until they got a 100-percent sure diagnosis. Either way, before I knew it my mom was telling me to finish Miss Mackay’s penmanship homework and to go to my room and wait for her and my father.
I knew before they told me. I knew everything about Martha before they knew. But they told me anyway. They told me in a very nonchalant way, actually, that my sister had been diagnosed with autism. Recognizing the word from the bookshelf, I asked exactly what it was. My parents grasped for answers, but the truth was that they were just as blind about this subject as I was. They found some response that managed to satisfy my curiosity, but I remember asking one question: “Will she have it for the rest of her life?” The answer to that was the answer to why I was haunted with 8-year-old guilt when I was alone with Martha, to why my vocal cords stopped working when I tried to form words for another question. The answer to that was the reason I stopped asking questions that day.
I didn’t know how to look at Martha after that. Was she the same as before? Had something happened to her that made her autistic? Had I done that something? Was it contagious? Could she drive when she got older? Could she be my maid of honor? My parents did their best to answer all the questions that I could throw at them, and I did my best to look at Martha the same as I had before. I loved her just as much, I just didn’t know what to think. My mind had become a barren, frozen expanse of space in my puzzled head. “Normal Martha” was all I had known for 18 months, and now I was being jolted into a universe with “Autistic Martha.” The mental numbness of the shock was the only thing I could feel for a while, but as a family we tried to move on.
***
I’ve heard thousands of definitions of autism since Martha was diagnosed, and the only conclusion I can come to is that every autistic person is different. This is why the definition varies. A broad medical definition is something along the lines of “a developmental neurological disorder, usually appearing in the first three years of life, affecting communication and social interaction.” However, anyone who is close to someone with autism knows that they make up their own definition.
For me, autism is a frustrating disorder that has challenged me and forced me to mature faster so that I could take care of my sister. It’s the reason why Martha loves to dance at any given minute, and the reason why she’s always laughing or screaming. This definition could go on for much longer than that, but that’s a whole other story. But, the definition of autism defines what Martha has, not who she is. I will never let these two things get mixed up.
One memory after Martha’s diagnosis sticks out in particular. We were in the crying room at church one day when Martha was about 2, and she was giggling and shrieking. After the many looks of disapproval directed my way, I finally asked my mom, “Why is she doing that? Why can’t she just stop?” This was the first and only time I have ever seen my mother cry. This memory will never escape me. The moment it happened, it branded itself onto my brain like a red-hot horseshoe in a Saturday morning cartoon. And so, from this experience, I get lesson No. 1 from Martha: Don’t quiet yourself down if you want to be heard, and don’t you dare go a single day or withstand a single ignorant look where you care about what others think of you.
Life went on after Martha was diagnosed with autism, and it is still going on today. As I write, I hear Martha giggling feverishly in the background about something she may have heard earlier, or just laughing because she’s happy. Don’t you wish it were that simple? If you’re happy, just laugh your heart out. If you’re sad, cry your eyes out. If you’re angry, scream at the top of your lungs until you’re out of breath. No complications, no judgments, no premeditation, just do it.
So maybe Martha didn’t turn out to be the talker that I predicted on May 5, 1999, in the hospital. She turned into something far better — a listener and a teacher. She has taught me more lessons than I could learn in 20 years of school. She keeps me grounded, as she is a constant reminder that I don’t know everything there is to know and I can be a teacher and a student at the same time. She has taught me that the key to success in life isn’t merely knowledge, but a sense of overwhelming happiness. She has taught me not to judge. She has taught me to be open-minded. She has taught me that the temporary cloud of panic in a house can be transformed into an eternal ray of happiness. She has taught me to be the pink Power Ranger, and not care one bit about being different from the crowd. We all need a little bit of pink Power Ranger in us, if you ask me. And, with the innumerable amount of other lessons she has brought to light for me, she has taught me to expect the unexpected from life, and never let your guard down, because the unexpected can turn out to be something more wonderful than you’ve ever experienced. Who knows, maybe one day the shock of your life can come to you after finishing Miss Mackay’s penmanship homework.
And so, this is where I leave you, and not because scientists have found a cure for autism or because that’s all there is to write. I leave you here because this story is still happening, as I type in each letter on my keyboard to compose it. Martha’s story will never be duplicated, and no one in the world will ever understand the bond that we share. So, I conclude where I began: No, I would not rather be an only child, and I have never given it a second thought. Martha can’t teach me anything more valuable than that.
Postscript: Kathryn is 25, works full-time at the Lynn Housing Authority & Neighborhood Development, and is headed to grad school in the fall. Martha is 18 and attends Nashoba Learning Group. She takes dance class, likes to bowl, and participates in activities and programs at Northeast Arc, including the Girls Just Want to Have Fun Group with students from Bishop Fenwick, and Adult Family Care. Her sister and parents are still learning from her every day.