Love, after all, is eternal. My Sister Carolyn Now Knows This

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 aside 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, physically handicapped but strong as an adult, though still with the cognitive limits of a 4–5-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; often, it would be Mom who would end up with bruises and lumps from my sister's kicks and bleeding, whaling fists.

When the rage subsided, Carolyn would see, but not understand the costs in injury 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 was little choice. Special Education classes 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, so at age 12, my sister was moved to 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 return to her new abode, and still sometimes, not peacefully.

Over the ensuing years, Lakeland Village gradually placed its charges in newly approved 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.

The years passed. Mom and Dad would regularly visit Carolyn, keeping track of her clothing, medical, bedding, and growing stuffed animals collection. But then came their own aging, dementia, assisted living and then nursing home care, finally ending with their deaths in 2019.

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 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 group home.

Two month ago, the call came from the director of her group home. My "big sister" may not make her 74th birthday in July, she said. Unable to safely swallow, doctors had her on oxygen, and were inserting a feeding tube to stabilize her.

Once that was done, it was hoped Carolyn could return to the comfort of her room, stuffed animals, and bed. "Comfort care," was the term.

That was the same term that governed the final journeys of our parents, before they passed away in their sleep, just months apart.

Despite my lack of legal status in Carolyn's case, her caregivers have been willing to keep me apprised of her status.

In the past couple weeks, that declined, rapidly. She was not responding to medications they had hoped would alleviate breathing difficulties, and finally palliative care became hospice nurses visiting on an increasing basis.

My own medical issues -- both kidneys needing surgery, successful, but resulting in serious blood loss -- left me more than 800 miles away from her, restricted from travel.

But I could still call her, and I did, with an accelerated, desperate yet growing certainty that her time was both precious, and short. 

My calls were litanies prayer and love, answered over a speaker phone by her with a couple raspy by words at first . . . then struggling grunts, and finally, deep sighs.

The prayers were for her ultimate healing -- a peaceful, painless release when the time came -- and a heavenly welcome with embraces from Mom and Dad.

Love, after all, is eternal. And, I believe with all my heart, she now knows this.

Carolyn passed away last night, just a few hours after my last call. 

The staff assures me she was at peace. Without pain.

And in the arms of Love.