What I Learned From My 'Special Needs' Sister

Soon after my sister, Sandra, was born in the predawn hours of a frigid February night in 1946, my mother knew something was wrong. Because of her Rh-negative blood factor, my mother’s last baby had required a transfusion from my father, who was standing by to give blood again if it was necessary to replace red blood cells that Rh antibodies destroyed.

My parents’ anxious concerns were ignored — and the doctor left to go ice fishing. The damage from untreated Rh-negative blood incompatibility left my sister with profound physical and intellectual impairment, a circumstance that deeply affected everyone in our family. For many years, the terrible unfairness of Sandra’s life consumed me. How could I be “normal,” and she not? It took me a long time to be able to just be with her without expectation and recognize the true miracle of her life.

From the beginning, my brother (two years older) and I (three years older) understood that there was no hope our younger sister would ever live a life like ours. That is, until Myra, our meddlesome neighbor, insisted that Oral Roberts, a faith-healing preacher coming to town, could “cure” my sister through “the laying on of hands.” She was so persistent that on a hot summer day my dad put on his Sunday suit and we accompanied Myra to the preacher’s revival meeting.

As we were ushered into a long line of people, many on crutches and in wheelchairs, Oral Roberts exhorted his faithful to “believe and be cured!”

Cured! My 7-year-old brain whizzed with expectation! Would Sandra suddenly begin talking like a normal 4-year-old, or would she have to learn to speak? I figured that if my brother and I worked hard teaching her all we knew, and shared our crayons and Little Golden Book Series, we’d have her ready to start kindergarten on time.

When it was our turn, Oral Roberts pulled my sister from my father’s arms, sank to his knees and clamped her head tightly in his hands. Clinging to my father’s knee, I was inches away from my sister, imagining her fearful pain as the preacher pressed her head ever more tightly — was he squeezing the bad stuff out of her?

Suddenly the preacher looked at me, eyeball to eyeball, shouting, “Do you believe?”

“Yes! Yesyesyesyesyes!” I screamed. “Fix her!”

In that instant of deafening noise, my ears plugged. I could hear nothing. Was this it? I looked at my sister, but could see no change, no sign of recognition in her face. But I was sure something had happened in that ear-plugged moment. She’d soon come around and be “normal.”

Before I knew it, we were led off the stage, told that our faith wasn’t strong enough. As we walked back down the aisle, hands and pity-filled eyes reached out to us. My mother was sobbing. My father, carrying my sister, was tight-lipped and pale. Myra let me know I may have been the weak link by demanding a cure.

We returned to our own traditional Protestant church the following Sunday, a familiar and reassuring place, where no one shouted and our religious faith wasn’t questioned. But in the larger world, our faith had been on the line, and we’d come up wanting. The horrifying condemnation — that Sandra would have been cured with an extra oomph of faith — only served to unify our family around my sister’s needs and welfare.

(The reputation of Oral Roberts and his namesake university would eventually go from heavenly to embroiled in scandals.)

Later that year, Sandra’s mental impairment was deemed too severe for her to be safely and adequately cared for at home. Instead of starting kindergarten, she began living in a children’s long-term care residence where we could visit her at will.

I’m ashamed of how long it took me to stop hoping, and making deals with God, for the long-delayed “cure.” Shamed, too, that it took so long to get over my anger, and my mother’s anger that I took on.

Eventually the dealmaking, false hopes and anger receded. I was able to take my sister’s hand, hold it for as long as she’d let me and accept what her life was and what it would never be.

I came to realize that the real miracle in her life took decades to unfold and required the dedication and patience of many caregivers. Sandra was born in an era when children with severe intellectual disabilities were often institutionalized, sometimes hidden away out of shame or given up on because they were not considered educable or trainable — which is not the case.

Intellectual disability, formerly called mental retardation, is characterized by below-average intelligence or mental ability and a lack of skills necessary for day-to-day living. While there’s no cure, people with intellectual disabilities — even someone with Sandra’s severe limitations — can acquire new skills. She would never be able to speak, read a book or prepare a meal for herself, but she could be trained to feed and dress herself, and manage some basic self-care.

In Sandra’s lifetime, there’s been a significant shift from institutional care to community-based care in a nurturing, home-like environment. Sandra lived with three other residents and a full-time staff of caregivers in a disability-accessible bungalow in a leafy neighborhood across from a park.

After breakfast, a van picked her up for work at a nonprofit Developmental Achievement Center, where adults with disabilities do basic jobs utilized by local businesses in a closely supervised program designed to develop motor skills and provide social interaction — and where she earned a modest paycheck.

She loved car rides, having a manicure and taking a day trip to my brother’s lake cabin where she could sit on the dock and dangle her toes in the water. Most gratifying for our family was the knowledge that she was protected and well cared for in a safe, supportive environment.

She passed away last May at age 77, leaving us as gently and quietly as she lived. Hannah Varda and Danielle Nordstrom, longtime caregivers who attended Sandra’s graveside service, spoke of her sunny disposition. “She had a playful, mischievous nature. You just wanted to be around her,” Danielle said.

I know. And we miss her.

How close are you to your siblings? Let us know in the comments below.