Author Elizabeth Stone said, “Making the decision to have a child—it is momentous. It is to decide forever to have your heart go walking around outside your body.” For some of us—the decision to forever have your heart go walking around outside your body was not a decision we made, but a decision thrust upon us by circumstance.
Nobody ever tells you that there are moments of parenting that will be truly heartbreaking. They are not just the catastrophes: a broken limb, a diagnosis, a bike accident. They are ephemeral moments. Blink and you may even miss them. Moments where children become hyper-aware of what makes them different; where what was normal becomes abnormal. Where a tiny bit of the magic in the world dies. Moments that bring a lump to our throat as we watch our perfect child come to see themselves as imperfect. For me—as a child—that realization came when a group of kids called my sister, Paula, a retard.
I’m not sure it’s possible to explain what it’s like to grow up with a retarded sister (the common term in those days) to someone who grew up without one—though, in fairness, I haven’t much tried. Understanding what it’s like requires understanding that there’s a difference in the first place, and most people don’t even really understand that. So, I guess I never really bothered because nobody ever seemed all that interested. This was in a day and age before integration programs, and before Sesame Street had a kid with Down Syndrome. I think that if I were to describe what it was like, though—it would probably sound a lot like the Elizabeth Stone quote…except that I never made the decision to set my heart free. My heart was stolen, and my heart was an easy target.
That kind of vulnerability is heavy load for siblings to bear, because there is nothing you can do to protect yourself. I might tell Paula to avoid certain groups because they’re mean, but when that group offers her a dollar in exchange for doing something humiliating, all she would see is kids offering her a dollar. How could that be mean? It’s us siblings who are burdened with the knowledge that the kids are being unkind. And so on-and-on it goes: with you trying to protect someone who will never learn to protect themselves. And each sibling will react differently to living with that vulnerability. Some will harden—they become tough and vow to defend. Some will distance themselves. Others use humor to mask just how much their heart is hurting.
And yet, despite the hurt, I would not be who I am without my sister. Being forced to be vulnerable so early and so often, taught me to value and care for vulnerability. It taught me that the value of a life is not only measured in diplomas, in children, in social activism, or in riches. It taught me that it is OK that some people will never amount to an objective measurement of success. My sister taught me that you can touch a lot of people a little bit, or you can touch a lucky few so profoundly they will never think of you without smiling—and that doesn’t require anything but a good heart.
She was diagnosed with cancer when she was thirteen.
I was in the fifth grade—my sister was thirteen. She had gone in for surgery to remove a bone spur in her leg, and come home with Cancer. I’m 38 now, and Cancer has become a seventh member of my family. I’ve known Cancer for longer than I’ve known my littlest brother. Longer than my wife. And longer than any of my three children. From the time I was nine, Cancer came to all of my family gatherings. Cancer was there at Christmas, when the Make-a-Wish Foundation put on a party for all the kids at the hospital—and Cancer laughed when my sister forgot she could no longer walk, stood up to get a cookie and collapsed against the table. Cancer also made me feel like shit for being embarrassed.
Cancer also used to love to go swimming with us in the summers. Cancer would snicker as my sister placed her crutches against the fence, sat on the floor and scooted on her ass from the fence to the pool. And ever the comedian, Cancer would whisper in kids’ ears, daring them to ask my sister where she got her hair cut. Then Cancer would convince me not to tell on the kids, because my parents already had enough on their plates.
Sometimes Cancer would come to school with me, too. He would laugh with the other fifth-grade students who wrote stories about my sister the peg-leg, the flamingo, and the bald eagle. Cancer knew that—in that day and age, at least—teachers didn’t intervene. Teasing made you tough. He taught me that laughing along with the other kids would end the teasing more quickly than getting bent out of shape. So, in a weird way, Cancer taught me to laugh.
More than anything, Cancer taught me not to get too attached to anything, or to anyone. That nothing that belonged to me could not be taken away. You see, after almost a decade of treatments, scans, remissions, recurrences and more treatments—Cancer decided to move on. He stayed away for nearly 15 years—and during that time my sister graduated high school, found an apartment and found a job bussing tables at a local cafe. And just when we started to forget about Cancer…just when Cancer started to fade into the distant recesses of our memory, there was a knock at the door…
My sister was diagnosed with breast cancer at thirty-two. Seven tumors. She passed away on November 29, 2010 at thirty-five. This year my sister would have been forty-one. Losing a sibling as an adult is a funny kind of loss: not like a spouse or a child, I imagine. But, siblings are the longest relationships you have in life, and there is a special sadness to having that relationship cut short. We have a kitchen magnet that says that a sister is like a piece of childhood that can never be lost. Only mine was lost, and I was devastated.
As time has passed, I don’t get the same kind of sad anymore. I’m more likely to see something and think, “I’ll bet Paula would really have liked that.” I go to look at Christmas lights with my own children, or I pass by the make-up section in Walgreens and chuckle to myself thinking, “Paula would have loved that.” I think, I’d sure like to give her a call—and I remember that I can’t and it makes me wish I’d done it more when she was alive. I don’t think of her every day anymore, but from time to time, when I do think of her, I miss her very much.
That’s why this time of year is so important for me. October is a month that warms my heart, because it’s when people remember those who have been punched in the face by Cancer. But if you’re thinking of going out to “save the ta-tas” or to “save second base” – consider this…speaking as a family member: of the things Cancer stole that I miss the most, ta-tas do not even make the list. Sisters make the list. Children make the list. A whole family makes the list—and so does a whole heart.
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