Lizzie | A Piece by Elena Delle Donne
We often read about stories of momentary greatness — a time when a human being persevered despite insurmountable odds. But what’s a moment of triumph for one person is a lifetime of perseverance for my sister, Lizzie.
Lizzie is my older sister — also the older sister to my brother Gene — but often times it feels like she’s my younger sister. She was born deaf and blind, with cerebral palsy and autism. She doesn’t speak. The only real interaction or communication I, or anyone, has with her is in person, with hand over hand sign language. She hugs. She smiles. She kisses.
Think about your average day. You wake up, do any number of things to get ready, you feed yourself, you drive or otherwise find transportation to work, you do your job, come home or perhaps go out for dinner, and then tuck yourself in for the night. For most, it’s a routine that doesn’t take much consideration at all. Feeding yourself is something you just do. Talking, articulating your words with the people around you — something you just do.
It’s the day-to-day autonomy that gives many of us a sense of pride and accomplishment. When you’re young, you imagine the day when you’re completely independent — making your own life, following your dreams.
Lizzie has a routine like most people, but none of the independence. A typical day for her begins around 8 a.m., when my mom gets her out of bed. She’ll feed Lizzie breakfast, and give her all of the medications she has to take each morning for her various conditions. During weekdays, my mom will drive her to the Mary Campbell Center — which, if you can imagine, is something like a school or daycare — where she’ll swim each day, among other things. My mom picks her up at 3 p.m. and takes her back home. If it’s nice outside, Lizzie will go for a golf cart ride or my parents will push her around in her wheelchair.
She loves to be outside; she loves the wind. Feeling is one of the few senses she has. Something as simple as a windy day makes her so happy because she can feel it.
Her days end with a big family dinner. For someone so small, she can eat a ridiculous amount of food. Growing up, we’d joke that we needed to clean our plates or Lizzie would for us.
When Gene and I were young, we didn’t realize that anything was different with Lizzie. She was the superstar in our family. That’s the beauty of kids, I think — they just experience life as is. But then, as you get older and more exposed to the world, you start to distinguish between “normal” and “different.” I knew something was different with Lizzie when friends came over. I experienced her through their eyes, noticing their reaction to someone with special needs. My parents had to explain to me that, when Lizzie was born, she was just born a little differently than most people. But they also emphasized how incredible she is and all the things she’s accomplished — small feats that we all take for granted.
I understood as much as a kid could, but there were many times when I was afraid. The scariest part was the doctor appointments. Lizzie was in and out of the hospital all the time. Kids don’t understand all of the medical nuances to a condition like Lizzie’s. When you’re young, and someone you know and love is going to the hospital, your first thought is that they’re going to die. That was always a fear of mine. I was lucky to have Gene there, who experienced the same feelings at the same time. My closeness with him started then. Our parents were phenomenal at answering our questions and keeping us informed. That honesty helped eliminate the fear.
Lizzie has had more than 20 surgeries. Many, at least in the beginning, were on her eyes. When she was young, she had very little vision but her eyesight has completely failed over time. The surgeries couldn’t save it. Later, she had spina bifida, and went through a 15-hour surgery.
The trips to and from the hospital are too many to count.
My parents, with everything they’ve been able to get through with Lizzie — and then, somehow, still be able to raise Gene and I — are incredible. A child with special needs takes a toll on any parent, but I especially see it in my mom, who carries everything with so much grace. She’s essentially been caring for a newborn for 30 years. Lizzie is still in diapers, so my mom and dad are still changing diapers every single day. They’ve been through so much — the surgeries, the different diagnoses. It’s pretty impressive that they wake up each and every day ready to do whatever they can to help her. It’s amazing what you’ll do for love.
There are a lot of misconceptions about people with special needs. I think people react to those with physical and mental disabilities the way that they do because they have a fear of the unknown — a belief that if you touch them, they might break. It’s not dissimilar to how people view those with an illness; they’re afraid to interact with them because they think the person is fragile. That’s hardly the truth. They are complicated and beautiful and human like the rest of us — they just express and experience the world differently.
I often see people not sure of how to interact with Lizzie when they meet her for the first time. She can’t see me. She can’t hear me. How do I even say “hi” to her? I try to lead by example and have them watch how we interact with her, and as they get comfortable, they’ll do the same. It’s important to remember that her communication is based on the remaining senses she does have; she might sniff your hair, she might even grab you and pull your hair, she might lick your head.
Therein lies one of the biggest lessons Lizzie has taught me: communication is so much more than words. That lesson has transcended all of my relationships. It’s changed how I communicate with those that I’m closest to. Language is important but actions — doing, touching — is above all. Giving someone a huge hug is sometimes way more effective than saying anything.
That’s what makes being apart from Lizzie so tough. I can’t just Skype with her when I’m missing her. I can’t text her. I can’t call her. That’s hard. I have to be with her to communicate — she has to literally touch me. Or smell me. I keep her picture as the background on my phone so I can always see her. She’s a huge reason why I don’t play overseas during the WNBA offseason like a lot of the other players. She was also a significant factor in my decision to play at the University of Delaware — in my own backyard.
My home is with her.
She’s made me a different person. She’s my constant perspective. I have Lyme disease and undergo regular treatment, including swallowing a palmful of pills each morning. As an athlete, my body and its performance is my job. I’m often exhausted from the Lyme, and frustrated with my body. It’s hard. But when I think about my position — when I think about how tired I am or how much it hurts — I think about Lizzie. I’m so lucky to have the health that I do, and so lucky to have a body and mind which allow me to do what I do. She inspires me. None of my hardships are even close to the same plane as what she has endured. And look at what makes her happy …
The way people interact with and treat those with mental and physical disabilities seems to have improved dramatically from when I was younger. I definitely credit the Special Olympics for helping that progress along. You have to get people with special needs out in the community. Don’t hide them; show them how incredible they are and what an asset to society they are. Empower them. I plan to do that with my own foundation, The Elena Delle Donne Charitable Foundation, which will combine initiatives from both the Special Olympics and Lyme disease awareness.
She’s never said a word to me, but Lizzie has taught me more than anyone in my life.
That’s her power.
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