A SISTER’S PERSPECTIVE

Delaney Beatty is the daughter of Lisa Richard, our Rural Outreach Specialist at the Center for Family Involvement.

Delaney wrote the following essay as part of the application process for medical school. She is currently living in Tennessee with her new husband and working as a Certified Nursing Assistant while she waits to hear where she gets in.

She wanted to share this essay so families can understand a sibling’s perspective on what it’s like to grow up in a big family where a brother and sister have a disability

These are her words:

I have two siblings with Down’s syndrome. My older biological sister, Zoe, and my younger adopted brother, Mark*.

At a young age, I became well acquainted and ultimately fascinated with the differences between my siblings and me. They were refreshingly honest, easily frustrated, ate food in bizarre combinations, made inappropriate comments, gave love without reservation, and enjoyed the simple things that life offered them. They made my life fun and challenging and ultimately, instilled in me a passion to study science, to learn what biological mechanisms were behind those differences and how they could create such beautifully unique people.

It was early on that I learned not all people see these differences as beautiful. When hearing that her son had been born with Down’s syndrome, Mark’s biological mother had her mind made up immediately. She gave her doctors one order and refused to listen to her husband as he pleaded for her to reconsider. When they were discharged from the hospital that day, Mark had been left behind.

Throughout the years, my roles as caretaker and advocate for my siblings and those like them have led me to develop an immense and sincere love for people. My brother and sister have taught me to respect and appreciate the differences between individuals, because as their sister, that is what I hope others will do for them. To appreciate how clever they are for sneaking two liters of Coke into church, for how much they love McDonald’s and having toast for dessert, when they knit an absurd looking multicolored blanket for your wedding present. My siblings taught me that the differences are valuable. Those differences have also made caring for Zoe and Mark more difficult. I remember my parents having to fight with the school board over my siblings’ equal treatment back in elementary school. At home, I still have to swallow the shameful anger in my throat when they won’t just listen and understand. I am fully aware that differences can be hard to accept. But learning to appreciate these differences in other people requires more from us, a greater understanding and compassion, which is why I believe growing up with my siblings has turned me into a better person than I might have been otherwise.

My siblings’ genetic disorder demands not only appreciation, but attention to the differences and the unseen mechanics responsible for Down syndrome and its affect on the mind and body. In my fascination of Zoe’s small stature and sloped almond eyes, of Mark’s dizzying nystagmus (rapid, uncontrollable eye movement) and crooked ankles – a passionately inquisitive eye was bred for physiology. For all the biological functions that work within us and how in their endless efforts, miraculously manage to produce a united and cognizant system. What a wild impossibility, that this unfathomably intricate and detailed body, with its constant meticulous movements, could work! Well sometimes, as I know so well, it doesn’t. My siblings are examples of that. I want to know why, in every instance, in every case, for every example, I want to know how it can go wrong and why, and then how I can fix it. I want to learn more – I want to lose sleep and time and energy learning more about the body.

It is Saturday morning, and while most households would be quiet, I have just been woken up by a barrage of sounds. I walk into Zoe’s room. She’s singing karaoke to a song blaring through the speakers; her words are loud and indecipherable. She’s wearing a large winter coat. Mark is sitting on the bed, rocking back and forth to the music coming through a pair of headphones. He’s wearing a robe covered in rainbows. He, too, is loudly mumbling indecipherable words. I wish at 6AM I could be sleeping, but I grab a mic instead.

*Mark is not his real name.