Impact Feature Issue on Siblings of People with Intellectual, Developmental, and Other Disabilities

I’m a Baby Boomer. But in 1966, I was an inquisitive 9-year-old. As the youngest of the family, my life centered around school, play, church, chores, and bounding after my “very cool” teenage sisters. I grew up in the hope of the 1964 Civil Rights Act. My parents grew up in Jim Crow America, but anchored our family in their resilience. They were also members of the Silent Generation, making our home a place of order, with little discussing or talking back. A busy place; our home was full of immediate and extended family, and those seeking a family. It was where a 9-year-old could learn tolerance and see faith at work.

In my prayers, I held a secret request for a younger sister. I hoped we’d share life experiences, and look out for each other. So, it just felt right when Mom and Dad brought home a surprise bundle named Leah in 1967. At age 10, my prayers were answered! Leah was perfect. And without me knowing, she was the first layer of my triple-decker sandwich.

Everyone helped. My mom and older sisters taught me how to care for the baby. Leah had expressive, brown eyes and was quite a “company-keeper.” We shared a room for awhile as she got older. She rarely slept through the night, and walked in her sleep. It was what I knew, and it was an inconvenience I was willing to live with. But my anguished mother, alone, took note of the fact that Leah was also missing many of her developmental milestones. The delays were as devastating to mom as the voice of the medical doctors who chastised her for giving birth at 40, and ignored her concerns. My fearless mother took none of this abuse. Though this pre-dated the 1975 Education for all Handicapped Children Act, now known as the Individuals with Disabilities Education Act (IDEA), mandating a free and appropriate education, Mom found a way. This marked the beginning of my advocacy apprenticeship.

As my older sisters married, Leah and I remained at home. By now, Leah had developed quite a fan base, including people at church, her sisters’ friends, and our community. Her eyes smiled when she connected with people. At home, however, the hyperactivity, sensory intolerance, insomnia, and screaming was often just too much. Conventional discipline failed. The frustration was palpable. And while my ‘70s high school experience taught me female empowerment, fathers of children with disabilities were still often relegated to the fringes, like my dad.

None of this mattered to me. My “little sis” and I were inseparable. We took walks, played games, read together, and listened to music under the dining room table. She was calm during those times. I was trusted to drive her to and from therapies and school. This was our normal. But the foundation of our family shifted and cracked when I learned my parents were divorcing.

Understandably, college became a refuge for me. Predictably, I majored in a field where I could help others. I embraced the academic challenges, and worked three jobs to mitigate the financial ones. Everything was new. Most notable was a solitude of which I only gradually became aware. I missed my family. Although a strangely unfamiliar condition, I was adjusting to not being needed. I was focused on meeting my goals. I wasn’t looking for love, but it came in a casual call from a childhood friend.

Now a handsome young man, he asked me out. Like others, I figured he’d disappear after failing the litmus test, which was connecting to my quirky little sister. To my surprise, he kept calling back, even after hearing Leah scream like a siren through her bath time. We still dated, even though Leah was the third person on some of those outings. He got my life. He passed the test and we were married after graduating college. Leah, then 12, was my junior bridesmaid, just as I had imagined as a child.

The years to follow would force us to lean on faith. We were thrilled with the unexpected birth of our first child. She was such a joy, and the perfect surprise. Leah didn’t care much for the competition until she fully understood her valued role as “auntie.” Shortly after our daughter’s birth, we had a beautiful son who was born with Spina Bifida. Time froze. I was no longer the advocate’s apprentice, but the advocate. I’d studied well, learning hope and resilience. We knew both of our children would have vibrant lives. Raising a child with a disability formed the second layer of my triple-decker sandwich.

My parents worked together, cautiously ushering Leah into adulthood and a place of her own. They helped us by caring for their grandchildren. My son benefited from early intervention, preschool and school-age assurances afforded by the IDEA. Noteworthy, and unexpected, was being a sib, raising a sib. It was ground I could help my daughter navigate and I felt blessed to help her do so.

My husband and I juggled kids’ lives, work, medical appointments, surgeries and our fair share of relationship stress. In this tangle of life, we were laser-focused on giving our children access to opportunities leading to full, independent lives. We added a third layer to our triple-decker sandwich as our parents aged. And because our family values had not changed, we supported our aging parents as they supported us, through their health challenges and final days.

I always believed Leah would be part of my adult life, but had no examples from which to envision that. Today she is part of my immediate family, and we’re an integral part of each other’s daily lives. I support her to make decisions, pay bills, coordinate medical care, and help her build and protect her vision for a good life. For these reasons, she lives a typically interdependent and imperfect adult life that is always an intentional work in progress.

I admit the perception that I’m somehow “replacing” my parents, is a frustration. I support Leah vehemently, but I am her sister. Ours is a different dynamic entirely. In a perfect world, sibling roles would be recognized, our involvement anticipated, and our diverse challenges effectively addressed. Because of the sheer number of aging, Boomer sibs, it has to happen.

In the blink of an eye, making choices for a good life, can quickly become decision-making for the end of a good life. In response, a group of Baby Boomer sibs has joined together to form the Silver Sibs Network. Our work is very new, but our focus is on supporting and informing aging siblings. We also hope our work will serve as a roadmap for younger siblings as they age into this role.

Today, Leah is settling in to her place in this “new family.” This, too has challenges.

But I will remain, “anchored in resilience.”