My Sister Was The Only Person In The World With Her Developmental Disorder And Until She Died, I Defined Myself As Her Caregiver

Kara needed the kind of care an infant requires for her entire life. There were feedings and diaper changes and baths and crying fits. My sister was my pride and joy.
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Amy Finney
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Kara needed the kind of care an infant requires for her entire life. There were feedings and diaper changes and baths and crying fits. My sister was my pride and joy.

Kara was born in uncertainty. After 6 hours of labor, the doctor held her limp body and nervously looked to my mother for a clue. Was she normal (whatever that meant) enough to resuscitate, or should we let her pass? My mother looked at Kara’s brown hair and counted her fingers and toes and wanted her to live.

Several months before, my mother had an abnormal ultrasound. This led to an amniocentesis, which confirmed my parents’ fears, and my sister was given the unique diagnosis of partial trisomy 17;22. 

Instead of the 46 chromosomes of a genetically typical person, Kara had a 47 chromosome that was part chromosome 17 and part chromosome 22. Most forms of trisomy lead to miscarriage, with a few exceptions like trisomy 21 (Down syndrome) and trisomies of the sex chromosomes (Klinefelter syndrome and others). My family was able to locate a few cases of trisomy 22 around the world, but nothing quite like partial trisomy 17;22.

Since Kara’s disorder had never been seen before, no one knew what to predict. She could live a few years, a few months, a few days, a few hours, or not make it to term.

My first memory of Kara was during my mother’s pregnancy. I was three years old and my mother held me in a rocking chair and said, “I’m going to have a baby, but the baby is very sick.”

The baby was very sick. Kara had several hospitalizations during her first year. She suffered from pneumonia and a case of GERD so severe that it led to a dangerously low weight. When Kara was a year old, she weighed just 10 pounds. My mother measured every drop Kara ate and hoped for weight gain. My father avoided bonding with Kara out of fear of losing her. I, however, was excited to be a big sister and bragged about it to anyone who would listen.

Kara’s Halloween costume at one month old

Kara’s Halloween costume at one month old

My parents made a point to include me in every aspect of Kara’s development, and I gladly participated. I was a precocious 3-year-old, and my baby sister was my pride and joy. She quickly became the center of my world.

Kara had an estimated developmental age of 1-2 years and an IQ below 25, putting her squarely in the “severely developmentally delayed” category. Her cognitive impairment came with physical impairment as well.

Kara had digestive issues that made normal eating impossible, and had a gastrostomy (a surgical opening through the abdomen into the stomach) placed so she could be fed through a tube. I learned to pour formula down the syringe and vent the gas from her stomach. 

When Kara began to eat a pureed diet by mouth, I learned to feed her. This meant always having a blender on hand for things like pasta and stew, and packing the fridge with a lot of yogurt. 

After years of practicing with her every evening, one of my proudest moments was when Kara held her sippy cup so she could drink on her own.

Kara struggled with mobility, preferring rolling to crawling or walking. I joined every appointment with her orthopedist and asked endless questions, followed her physical therapist around while she was trying to work so I could learn how to help Kara exercise, and selected the colors on her leg braces. At age 7, Kara took her first steps in my grandma’s back yard, stumbling between me and my mother.

She may have remained nonverbal her entire life, but Kara was not without opinions. She had a list of strict rules: leg crossing by anyone was verboten, all cabinets had to be open to specific angles, and there must never be lights on in the kitchen. Barney was constantly streaming on her television, and now every song is deeply embedded in my brain. Kara was also a music lover. Her favorite songs included Lynyrd Skynyrd’s “Free Bird” and the Soviet national anthem.

The amount of care that Kara required impacted most aspects of my life. We rarely had guests over due to Kara’s idiosyncrasies. She damaged a lot of furniture, and insisted, to the point of screaming and tears, that objects be placed in specific places so the house looked strange and disheveled. 

My parents grew apart from their friends, and didn’t attend many of my school events. I baby-sat Kara often, and she required constant supervision. She needed the kind of care an infant requires for her entire life. There were feedings and diaper changes and baths and crying fits. We dealt with anaphylactic reactions, dislocated patellas, and many sleepless nights.

Life with Kara taught me to be brazen and outspoken. If she wasn’t going to be able to speak, I was going to speak enough for the two of us. If people were going to be ignorant about persons with disabilities, I was going to teach them. If my home life wasn’t going to be “normal,” I was going to radically embrace the weirdness and make it a part of my identity. I’m sure many people in my life have thought of me as the girl with the disabled sister.

Dressed up for Easter

Dressed up for Easter

In 2010, when Kara was 19 and I was 22, my role changed from “involved big sister” to “major caretaker.” Kara suddenly stopped rolling and scooting around, and would shriek in pain. We took her to the emergency room but no one could figure out what was happening. 

For three months, she refused to move and our days were punctuated by her screams and tears. I moved home with my parents to aid in her care.

One day, during a knee X-ray, the technician noticed an issue with Kara’s hip. Upon further examination by an orthopedic surgeon, we found out that her hip had been dislocated for the past three months, which was the source of her pain and mobility issues.

After emergency surgery, Kara spent over three weeks in the hospital enduring complications. My mother and I would alternate spending nights in the hospital. I held Kara’s hands so she wouldn’t rip out her IV during a transfusion and argued with an occupational therapist who was pushing Kara to try things that were painful for her. 

On one particularly awful night, Kara was extremely uncomfortable and wouldn’t stop crying. I was so upset, the nurses suggested I step out for a walk. I could hear her screams from a different floor as I lay on a couch and cried.

Kara was discharged in a body cast. My parents and I would rotate her to prevent pressure ulcers, change her diaper, and administer medication every two hours. A schedule was posted on her bedroom door so we could track every action. We had alarms to wake us at night and were fortunate enough to be able to leave work several times during the day.

Kara’s hospitalization was the beginning of her decline. She never regained mobility, and spent the next four years in a wheelchair or hospital bed, and eventually moved into a special needs nursing care facility. 

Kara endured several more life-threatening medical issues, and began to seem tired. Friends that weren’t supportive fell by the wayside and friends that were supportive became my lifelines.

My relationship with her, however, continued to thrive. I started including her with my friends whenever possible and they became her friends. I took her for drives while blasting music as loud as I could and would bring her up to my apartment in the city for sleepovers. We made trips to Disneyland because she loved rides. I think Kara’s favorite experience was getting dinner with a group of people in a loud restaurant. She loved the energy and the attention and I loved her companionship.

Kara always loved amusement park rides.

Kara always loved amusement park rides.

Kara passed away suddenly on August 25, 2015, at age 23. Her cause of death is currently unknown.

Kara’s death had crossed my mind many times throughout my life before it actually happened. I thought losing her would be harder than losing anyone else, and I had always planned to be present with her in that moment holding her hand. 

Unfortunately I was 2,000 miles away when she suddenly became sick. My mother made it in time, and when she called me to confirm that Kara was dying, I screamed in agony. I said goodbye to Kara over FaceTime, and my mother held her hand as her heart beat its last beat. I felt the life sucked out of me and it was the single most painful moment I have experienced.

I pursued a career in healthcare because of my Kara. I picked my apartment because we could get a wheelchair inside the door and chose my roommate because she is warm and supported my sister’s needs. I own a car in San Francisco large enough to haul a wheelchair around. There are sippy cups in my cabinets and diapers in my room.

Whenever I envisioned my future, I pictured Kara. I planned to live somewhere where she could be close by in a home she could enjoy. When I envisioned my future family, it was always the two of us.

Now, my future feels blank. After 24 years centered around her, I don’t know how to make decisions or plans without Kara as my anchor. How can I love a person who has never met Kara and will never meet her? How will I decide where to live or how to spend holidays?

Kara’s profound impact on my personality and values won’t change now that she’s gone, but the way I live and express myself will have to evolve now that I no longer have medications to administer or diapers to change.

What I do know is that I need to find a way to continue to be a part of the special needs community. Kara had a best friend who I can continue to support, and Kara was fortunate enough to attend camps, horseback riding, and swimming programs where I could get involved.

I’m scared of the changes, but ready to find out what my life means without her.