My New Normal: I Grew Up With A Special-Needs Sister And It Was A Gift
At 2 years old, when asked if I wanted a brother or a sister, my response was always consistent: “I want French fries.” Nine months later, my little French fry was born: Samantha. Little did I know she would shape my life tremendously.
Samantha was born with Prader-Willi Syndrome (PWS), a complex, lifelong genetic disorder affecting appetite, growth, metabolism, cognitive function and behavior.
The hallmark characteristics are: involuntary, and uncontrollable, chronic feelings of hunger and a slowed metabolism that can lead to excessive eating and life-threatening obesity.
Those with PWS need intervention and strict external control to maintain normal weight and to help save their lives.
So yes, it's fair to assume my only sibling, my little French fry, was born with special needs. When going on dates, speaking with a colleague, or making a new friend, many people get uncomfortable when they hear I have a special-needs sister.
They often don't know what the appropriate reaction is.
I grew up in Long Island. I drove a nice car, followed the latest trends and was fortunate enough to be taught by expensive tutors in order to prepare for my future.
To many, I was the Typical Long Island Girl: jaded by materialistic desires, superficial relationships and a need to fit in.
Little did people know I grew up in a Greek household with a special-needs sister, and I was as far from the Typical Long Island Girl label as could be.
My amazing parents went out of their way to make sure I had a “normal” childhood, so they signed me up for sports teams, dance classes, and they even hid stashes of Oreos and Dunkaroos so I could “eat like a [normal] kid.”
They made sure I was always surrounded by loving family and lots of friends. They always worried I would be “neglected” of the experiences they got to enjoy growing up “normal.”
I am forever grateful for the support and protection they’ve afforded me, but, to be honest, growing up with my French fry was my normal.
Locking the refrigerator, witnessing temper tantrums on holidays, making up songs together, playing with the dogs, needing constant supervision in the kitchen, my sister’s ass crack sometimes showing in public, breaking into dance wherever we heard a good beat, sharing an inappropriate thought at a loud volume while sitting at a fancy restaurant — these became my new normal. And sure, it’s not exactly conventional, but this was what we had.
Of course with the good came the very bad days, like the time she tried to jump out of a moving car on the Long Island Expressway as I held back all 275 lbs. of her — and the time she left the house for a residential school, where, years later, we discovered she’d been abused by the staff, causing her to suffer from even more PTSD.
Watching my sister go through each high and low, sometimes by the day, often by the minute, was heartbreaking. But Samantha never gave me a reason to be sad.
And with the help and love of a supportive family, a wealth of resources, and an inspirational amount of resilience, Samantha lost more than 130 lbs., worked through her PTSD and is in control of the behaviors that once controlled her.
So many articles focus on the difficulties stemming from life with this syndrome — and how “hard it is” for a family to deal — but as a young adult who’s had friends lose family members tragically, seen young girls enter rehab for substance abuse and addiction and mourned family friends who’ve lost battles to cancer, to say growing up with a special-needs sister is a “hard thing” seems naïve.
Special needs doesn’t mean constant pain, but for these individuals, it does mean their youth lasts forever. I envy the innocence my sister possesses, sheltered from the horrors and tragedies this world faces day in and day out.
For her, life is simple… She cares only about her meals and her loved ones. If only we were all so lucky to have such a healthy perspective on life.
So when you meet people with special needs, be sensitive and understand they’re “special” because they know what their “needs” truly are — they’re not distracted by the things that so often dictate our own behaviors and desires.
I can only hope to one day be so special and so unfazed by wants and desires. To me, that is normality, and a life well-lived.
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