Patients

A Sibling’s Perspective

Laura_Sarah_Swing
Laura and Sarah as children.

“Wawa… W-wawa grroww!” comes the fierce roar of my 13-year-old sister-turned-tiger from across the dinner table. Sarah sits on her haunches like a kitten poised to pounce, ready to see if I’ll take her bait. Dropping my dinner fork and forgetting the pot roast lying on my plate, I slide off my seat to the waiting floor below, responding with my own savage roar. Without a backward glance I bound off to the other end of the room. The striped shirt on my back turns into the streaks of a tiger as I come to a screeching halt a few yards from my playmate.

Looking up I see her coming towards me. The Lion King silkscreen on her shirt seems to dictate her actions. Her limbs move instinctively as she crawls after me in hot pursuit. Dinner, and the rest of life, are worlds away. Reality has become blurred and turned into an African savanna. I crouch behind a particularly large tuft of grass, shaped like a Lazy Boy recliner, and wait for the next attack.

The sound of raw knees scraping against carpet warned me of her arrival. I bounded away to a cacophony of my parents’ laughter. Far from being exasperated at our lack of manners, they were thrilled at this interaction, happy that we could play and horse around together, like typical sisters, even if it did come at the expense of a quiet and peaceful dinner.

The shrieks and laughter from our parents at the dinner table combined with the visions of our imagination and created a world complete with sound effects. My sister and I were immersed in a make-believe world of our creation, that only the two of us were allowed to enter.

This game was one of my favorites. When dinner lost its appeal, my sister and I would wriggle away from its monotonous grasp and crawl around on the carpet, fully engaged in our faraway world. Sarah was always the attacker, and I the obliging target of her attacks. Our enjoyment of this game carried on for years, long past an age when most teenagers would have found amusement in this make-believe feline world.

It was one place where I could connect with my sister on her level. Here Sarah didn’t need to be hindered by the leg braces that she must use whenever entering the upright world. She could be herself, bare of the costume worn to please those who wanted her to be a typical, walking, and dexterous human being. Her outgoing personality was conducive to this rambunctious game, and she allowed me to enter her world for these brief moments.

Sarah has a rare disability called Rubinstein Taybi Syndrome. It’s caused by a single point deletion in one of her chromosomes. Because of this, her body doesn’t produce a protein necessary to turn on some genes in her cells that are supposed to produce other proteins. It’s a domino effect: because she doesn’t produce one protein, her body can’t produce many others.

For Sarah, Rubenstein Taybi Syndrome has meant many things. Our family’s scrapbooks are sprinkled with memories of her times spent in the hospital for various reasons. When she was younger, she endured two open-heart surgeries. One repaired a hole in her heart and switched the heart’s connections to the pulmonary artery and the aorta.  The other removed a flap of tissue that would have proven fatal if left unchecked. She also had to have a couple of surgeries on the ligaments in her knees in an unsuccessful attempt to allow her to walk without leg braces. When she was older, Sarah had to have back surgery to straighten out her spine from scoliosis, which put her in the Intensive Care Unit for a week. But the marks of her disability are not only physical; Sarah is also mentally retarded.

This last fact has been the hardest for me to cope with over the years. It has meant that I don’t have someone to go to when I have problems with my parents, or want relationship advice. It has meant that I act both as a younger sibling and an older sibling. Sarah calls me her baby sister, but I am the one who will have to look out for her when we are older. Most painfully for me, Sarah’s mental retardation has meant that as I’ve grown older and matured, I have inevitably lost the innate ability I once had to truly connect with my sister.

I miss being able to escape into this fantasy world with her. It has become increasingly harder over the years to connect, so effortlessly, to this person with whom I was once so close. The charm and innocence of a child’s world have become further and further lost in a sea of adult troubles.

Sarah has moved into a group home and is loving her new life. She lives with three other young women, in a house in Bloomington, MN where they have round-the-clock care. Right now she is preparing to transfer from a post-secondary program, where she has learned to do various work like delivering mail at nursing homes and wiping tables at restaurants, into a longer-term situation where she will hold a highly supervised part-time job.

I am at a similar stage in life as my sister, but facing a very different future than hers. She graduated from the special education program at a public school, whereas I will graduate from an academically rigorous college prep school. She moved out of the house and went to Bloomington. I will move out of the house and go halfway across the country. Her future is set, whereas mine is entirely undecided.

When we were young our lives were so similar; we went to the same preschool, same elementary school, and same summer camp. We played together in our free time and knew all of each other’s friends. But as we’ve grown older, our lives have grown apart. She is happily leading her life, and I am happily leading mine, but our separate worlds fail to overlap like they once did.

Back in the fantasy world of the African savannah, I dig my claws into the thick carpet of grass and leap past my expectant companion. A fit of giggles almost holds me back from making an escape, though I am just barely able to bound away from her grasp. I wheel around and come face to face with the attacker. A feral cry raises the hair on my neck and arches my back. Her paws thunder and my muscles stiffen. My stomach growls, reminding me that dinner awaits my capture.

I allow myself to be caught—a final pounce and it is all over. My knees look like they’ve been attacked by sandpaper, but it’s worth it for the look on my sister’s face: an innocent grin accompanied by the two crescent moons of her dancing eyes. A shared giggle comes pouring out as unstoppable as a sneeze. Our world has melted back into reality. The smell of our dad’s famous pot-roast tickles our noses as we reluctantly make our way back to the solid confines of our chairs. Africa must wait for another day.

Laura Martini, now a product designer at Counsyl, wrote this as a high school student grappling with her sister’s disability. Her observations of how poorly the world is designed for those with disabilities inspired her to pursue design, as a Mechanical Engineering student at MIT, the MIT Media Lab and Stanford, and professionally at Apple and the design firm IDEO before joining Counsyl. Martini is grateful that her work helps other families avoid the same unexpected heartache her family has experienced.

5 comments

  1. ” Sarah calls me her baby sister, but I am the one who will have to look out for her when we are older. ”

    I know how this feels all too well. Both of my siblings are autistic while my sister also has Down Syndrome. While Holly definitely sees me as the annoying baby sister who stole attention from them all, I also have this duo-role of older sibling (apparently once when my parents were gone and I was not older than 12, I tried to make lunch for my siblings). Someday I likely will have to return to the east coast to keep an eye on them both, and it’s this sort of expectation for the future that follows me even over here in SSF.

    1. I had no idea you also have siblings who have disabilities. I wonder how many of us in the Counsyl family share this experience. It’s definitely a unique situation, and shapes how you plan your life. It also makes me appreciate just how luck we are to to have been born healthy, since it’s not a given in life.

      1. I’m right there with you ladies. My sister is autistic, but that is only the tip of the iceberg that is her disorder. Her geneticist still calls it a “Multiple Congenital Anomaly Disorder” because they still can’t figure her out at 26yo. While I am 3 years older, I can’t remember a time when it didn’t seem like a generation between us. It certainly makes you grateful and mature!

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