My Sibling Experience as a Caregiver of Twin Sisters Living with a Neurodevelopmental Disease

Twin Sisters Living with a Neurodevelopmental Disease

My name is Paulina Polanco, l am a Syngap sibling to two 20-year-olds, they’re twins and their names are Esperanza and Libertad, or Espy and Libby for short. They were diagnosed with Syngap1 in 2020. The significance of the diagnosis became apparent when Espy had their first grand mal seizure in 2021. This occurred just before the new year started. That night completely changed our lives. Before that, neither of them had had seizures, so we thought autism was the main reason for their condition, and that Syngap1 was just another name to add to the list of ailments. The night that Espy had the seizure, I was the one who found her.

That experience brought a lot of emotions to the surface that I had never paid any attention to. I wrote about how it went for me, so I’m going to read some excerpts of that to you all:

Reflections on Love and Acceptance: My Journey with Syngap1 Siblings

Coming home from experiencing new parts of life and making new memories usually would’ve felt comforting. Back in my home, my sanctuary, where I’m most comfortable. So why was I feeling anxious on the drive home? It’s not that I don’t want to be there, it’s not that I don’t want to help. I want to support my sisters in every possible way because caregiving can be extremely challenging both physically and mentally. They need all the help and support they can get. And at the same time feeling guilty and ridiculous all at once because I just went out and had a great time. Am I ungrateful? Am I selfish for wishing I could do these things more often without having to worry?

In 2006 when the twins were diagnosed with autism, there wasn’t much known about it. It was all new to us, and seemingly new to the general public too. It was scary and daunting and extremely confusing for me being that I was just 9 years old. If the twins were born now, we would be better prepared for this life with more knowledge.Our approach to their needs and challenges would have been more informed and proactive.
Fourteen years later, with the Syngap1 diagnosis, it felt like deja vu.

Balancing Love and Self

My parents are extremely supportive, they encourage me to go out and live my life, but I can’t help but feel the way that I do. The thoughts of what it’ll be like when they’re gone linger around in my head frequently to the point where I’ve lost sleep over it. But when I do go out and have fun, I forget for just a moment about my reality. In those moments, I’m just me, I’m not my sisters’ keeper, I’m not a caregiver. I’m just me. It’s freeing, but when I come home it all hits me again.

The fear, the anxiety, the unknowing. I feel guilty because it’s not anyone’s fault. I would never want to make the twins feel unwanted, even if they don’t know what that would mean or if they wouldn’t care. Their journey with Syngap1 is one I care deeply about.

They feel our love and care; it shows when Espy hugs me and presses her cheek against mine. It showed when Libby’s teacher said she was in a great mood the day after their birthday when we bought them an ice cream cake and sang in unison several times just to make Libby laugh.

In reality, I think I’m happiest when my sisters and my parents are happy, despite the challenges of Syngap1. But there’s a deep sadness when I think about how it would’ve been if they could’ve learned to talk and hold conversations. I wonder if we would have fought over them stealing my clothes or helping each other do our hair, had movie nights together, or gone on sister dates with our other sisters.

Sometimes I hope to see them in my dreams.

Embracing Unconditional Love: Journey with Syngap1 Siblings

I feel like I’m mourning someone who never existed—never got the chance to exist because of Syngap1. I know there’s no point in that, but I can’t help but wonder. Yet despite everything, we should love and care for the twins just as they are, without judgment. Their hearts are pure, revealing raw emotions and frustrations when misunderstood. They show joy in things beyond our grasp, pain they can’t express, and boredom without a cure. I feel calm knowing they have us to go through all of that with them.

Libby and Espy, my sisters with Syngap1, mean the world to me. Words can’t explain how much I love them. I cherish hearing their laughter, witnessing the cute and funny things they do, and marveling at their surprises, like the things they’ve learned. I feel proud when they communicate clearly, even if it’s just to express their desires, such as saying “I want cupcake” or signaling “I want bye.” Their resilience in facing the challenges of Syngap1 inspires me every day.

Learning from Love

Taking a cue from Winnie the Pooh, I aspire to live a day longer than them, ensuring they always feel loved. Sometimes I have to remind myself that I’m their sister and not their mom and I’m allowed to make my own life too. Thanks to the twins, I am who I am. My heart belongs to them. Understanding humanity has deepened through them. Feeling their emotions, understanding their actions. They analyzed their reactions and understood behaviors to ease their journey. Helping them helps me be better.

I feel incredibly fortunate to share their journey, experiencing pure, unconditional love and learning to give without expecting anything in return. It’s taught me to appreciate love in unexpected ways. Growing up with my Syngap1 sisters was unique and challenging, but it’s a bond I wouldn’t trade. As their sibling, I’ve embraced our reality. They deserve acceptance for who they are. While it may seem bleak at times, I’ve come to see it as a journey with moments of darkness, glimpses of light, and ongoing growth.

I’m grateful for all of it. My family and I have faced challenges with resilience, and I’m thankful for our strength. I hope we continue to persevere together.

By Paulina Polanco