Her name is Carolyn.
She has always been my "big sister," being born three years before me.
But because of her oxygen deprivation in the womb, and the cerebral palsy she was born with, it was my role from a young age to be her "big brother."
She needed surgery to correct her crossed-eyes as an infant, and physical and often painful strap on leather and metal braces to hobble a few steps. I was five years old when Mom took me outside on a warm Norwalk, Calif., day and explained why my sis still could speak only short sentences, and then only with intensively exhausting stutters.
"Carolyn is what the doctors call 'mentally retarded,'" Mom said softly. "She won't be able to learn like you. And since she is crippled, people stare at how she walks, and some kids will even tease and try to hurt her."
There were tears forming in Mom's eyes. "You will be her 'big brother,' more and more as you grow," she said, trying to smile encouragingly.
And so, I tried to be just that. Protecting my sister from neighborhood bullies got me in my first fights as a young boy, and the violence escalated from a punch in the stomach for a kid who pushed her to the ground, to blood and chipped teeth for both me and one, sometimes more bullies as I grew into adolescence.
But I could not protect Carolyn from the emotional swings and physical tantrums that came as she grew, too, though physically handicapped but strong as an adult. Still, she had the cognitive limits of a 4-to–5-year-old.
Mom, barely 5-foot-2, would try to keep the larger Carolyn from biting chunks out of her own arms in self-destructive rages; and often, Mom, too, would end up with bruises and lumps from my sister's kicks and bleeding, whaling fists.
When the rage subsided, a confused Carolyn would see, but not understand injuries to herself and Mom. Sis would cry, "S-s-s-orry, Mom, S-s-orry!" Mom would wince, but always hug, whispering loving assurances, her own face wet with tears.
Half a century ago, there were limited choices to address this crisis. Special Education classes then were little more than dumping grounds for any and all mentally and physically handicapped kids.
Group homes for their care did not yet exist where we lived in Eastern Washington. But the situation with my tortured sister could not continue, and eventually medical and social workers consulted advised placing Carolyn in institutional care -- a nearby state-funded dormitory facility where she would be cared for along with 80 others "like her."
Mom and Dad reluctantly agreed. I was 12 when my sister was moved to a multi-story, brick Lakeland Village. Oh, we visited her there often, and holidays she would join us at home -- for a night or two -- but then would come time for her to go back, and still sometimes, not peacefully.
Over the ensuing years, Lakeland Village gradually placed its charges in smaller group homes. Physicians would now prescribe medications to ease the mood swings, social workers arranged regular outings and crafts, exercise, trips to the movies and church services.
I could not qualify under Washington state law to myself serve as Carolyn's legal guardian, since I had lived and worked 800 miles away in Utah for several decades; my sister came under the care of professional state-appointed guardians.
I have been able to talk with her on the telephone often and visit her in person on several occasions over the past few years. I saw her health deteriorating, her mobility requiring first an aluminum walker, and then a wheelchair. Her breathing became increasingly labored, and then in the past few months, trips to the hospital and long-term nursing care before a brief return to her own room and belongings at her residential group home.
I have been able to talk with her on the telephone often and visit her in person on several occasions over the past few years.
Her breathing became increasingly labored, and then in the past few months, trips to the hospital and long-term nursing care before a brief return to her own room and belongings at her residential group home.
Last night, the call came from the director of her home. My "big sister" may not make her 74th birthday in July.
Again she was rushed to the hospital, where doctors found her unable to safely swallow, her blood oxygen levels in the low 80s. She was put on supplemental oxygen, and a feeding tube inserted to stabilize her.
Once that is done, it was hoped Carolyn could return to the comfort of her group home room, in her own bed, surrounded by those stuffed animals, and what had become her caregiving sisters and family.
"Comfort care," was the term. It was an echo for me, being the same words that had been used to govern the final journeys of our parents, before they passed away in their sleep, just months apart a few years ago.
Despite my lack of legal status in Carolyn's case, her caregivers have been willing to keep me regularly apprised of her status. The immediate future, and how it unfolds for her, and me, her distant "big brother," is known only to the God we both love.
And so, once again, I wait, and I pray.
I ask for physical healing, knowing that even if it comes for her, it will be a brief reprieve. Rather, I pray, too, for her ultimate healing -- a peaceful, painless release when the time comes -- and a heavenly welcome and embraces from Mom and Dad.
Love, after all, is eternal.
