My Experience as a Syngap 1 Caregiver: A Sibling’s Path of Caregiving, Love, and Resilience
My Experience as a Syngap 1 Caregiver: A Sibling’s Path of Caregiving, Love, and Resilience
Understanding Syngap1: A Sibling’s Perspective
My name is Paulina Polanco, and I am a Syngap1 caregiver to my two extraordinary 20-year-old twin sisters, Esperanza and Libertad—Espy and Libby. Their journey with this neurodevelopmental disease has transformed our family’s understanding of love, resilience, and unconditional support.
The Turning Point: When Syngap1 Became Real
In 2020, our family received the Syngap1 diagnosis. However, the true significance became painfully clear in late 2021 when Espy experienced her first grand mal seizure. That night fundamentally changed everything we knew about our sisters’ condition. Before this moment, we had understood their challenges primarily through the lens of autism, viewing Syngap1 as just another medical term.
Finding Espy during her first seizure was a traumatic experience that brought countless emotions to the surface—emotions I had never fully acknowledged before. It was a stark reminder of the complex reality of caregiving for individuals with a rare neurodevelopmental disorder.
The Emotional Landscape of a Syngap1 Caregiver Sibling
Balancing personal life with caregiving responsibilities is an intricate dance. The guilt and anxiety are constant companions. When I go out and enjoy moments of freedom, I’m simultaneously grateful and overwhelmed. Am I being selfish? Am I doing enough? These questions echo in my mind constantly.
The uncertainty of the future weighs heavily. Thoughts about what will happen when my parents are no longer able to provide care haunt my sleepless nights. Yet, my parents encourage me to live my life, understanding the emotional toll of being a caregiver sibling.
Embracing Unconditional Love
Despite the challenges of Syngap1, my sisters bring immeasurable joy. Espy’s gentle cheek press, Libby’s infectious laugh—these moments transcend the medical diagnosis. I’ve learned to cherish their unique ways of communication, whether it’s Libby saying “I want cupcake” or Espy expressing her desires.
There’s a profound sense of mourning for the neurotypical experiences we might have shared—borrowing clothes, having late-night conversations, going on sister dates. But I’ve come to understand that love isn’t about what could have been, but about embracing who they are right now.
Lessons in Caregiving and Humanity
My sisters have been my greatest teachers. They’ve shown me pure, unfiltered emotion and taught me about resilience. While caring for them can be physically and mentally challenging, it has also been an incredible journey of personal growth and understanding.
I aspire to be their lifelong protector, inspired by the wisdom of Winnie the Pooh—to ensure they always feel loved and supported. My goal is to balance being their sister and their caregiver, recognizing that I too deserve a life of my own.
A Message of Hope for Syngap1 Families
To other families navigating the complex world of neurodevelopmental diseases like Syngap1, know that you are not alone. Our journey is marked by challenges, but also by immeasurable love, unexpected joys, and profound resilience.
