Suzannah "Suzie" Kathleen Goins

I was Suzie’s speech therapist for the past 5 years and it has been one of the absolute greatest honors of my life to work with such a beautiful human. I like to think that we both taught eachother so much and she let me try out every communication route I could think of with her. This included the most cumbersome setup of a switch that detected her eye blinks. It had to be positioned at just the right angle to detect her blinks, it was wrapped to these funky glasses frames and then the cord connected to a Bluetooth switch that connected to the iPad that would read her options. Then, she would have to blink twice to get it to say the option again or speak the longer message out loud. That switch was almost as moody as Suzie! But that brilliant young lady gave it her all through everything I tried with her and it quickly became evident to me, as it was evident to so many others, that she had so much more to say. Shortly after birth, she was diagnosed with cerebral palsy, leaving her with limited physical movement that declined as she aged. By the time I started seeing her for speech therapy she was only able to move her eyes volitionally. See, Suzie had been used to answering yes and no questions for 17 years of her life through eye blinks. It got her through but there had to be a better way. So we started down the path of getting Suzie her voice. We trialed her eye gaze device and she took to it right away. Insurance tried to turn us down twice but her amazing warrior mother, Tamara, said absolutely not and we went to court and won Suzie the voice she has always deserved to have. I want to explain how amazing she was with her communication device and what it did. Her device had different buttons with various messages and she had to navigate through pages and folders programmed on it with just her eyes to find what she wanted to say. Once she was on the right page she then had to find the button she wanted, hold her gaze for a few seconds, and the device would track that and speak the button she held her gaze on. She had to learn where all the buttons were and memorize where to go and was constantly exploring her device to learn it. To put it into perspective, getting a communication device is akin to learning a new language. The amount of dedication, eye strength, determination, and intelligence this takes is something that quite honestly most of us do not have. Add in her physical disabilities, which included a cortical visual impairment of her eyes, and the multitude of medical difficulties she faced every single day, and anyone reading this should be completely awestruck that this young woman was able to use this device the way that she could. Suzie was so loving, funny, sassy, brilliant, and a million more things. She loved to mess around, keeping people up all hours of the night talking and she was constantly scaring people by turning her volume up to the loudest level. When her mom asked to put some swear words on her device I think Patty, her nurse, almost passed out but man if that girl didn’t know when to use those words. You never knew when you might get told “you’re pissing me off”. She also knew exactly how to get her point across just by ignoring you. I had to earn her trust for months when I first started and one summer I didn’t work summer school and she ignored me for at least 2 months after school started up again. Peeking through those pretty eyelashes at me just mad. And she could argue - I was going over how polite conversations had to have turns with her one day. Telling her you can’t just repeatedly talk over someone, you need to wait when you ask a question or tell someone something so they can respond. Well, she cut me off a few times during that lesson and when I told her she needed to say the story just 1 time, she made her way to her number page and said 4. We argued over the number of times it was polite for her to say a story in a row for a bit but we all know who won. And to no one’s surprise she was telling me the Zuri story, she loved her visits from him. But she also knew how to make you laugh and feel her love. Her “I love you” is something I’ll always cherish and she was always so generous with that phrase to me. When I brought my son to meet her as a baby she asked for “more” snuggles when I picked him back up, she had the purest soul. And when she let someone in she did so with her whole heart and you could feel her pain when someone left her life. Suzie gave some of the most beautiful and selfless gifts after she passed away. She donated her organs to save and improve so many lives and her communication device is going to be donated to Oishei Children’s Hospital, where countless kids will be given the chance to communicate through some of the worst times of their lives because of Suzie. Suzie was absolute living proof that everyone deserves a voice and to never underestimate a person. If you asked someone who didn’t know her to read her file, she was a baby that was never supposed to live long and based on testing she was a child with a low IQ and she definitely wouldn’t have much to say. But Suzie’s life is the picture of 21 years of pure determination, love, and intelligence beyond what a standardized test could ever measure. She never gave up, she fought every single day so those around her knew she was in there. She is the product of a mother who fought for her fiercely and Suzie was so lucky to have known a love like that. I miss her so much but we are all so lucky to have known her and my life has undoubtedly changed for the better because I knew her. Suzie, I hope you’re laughing and singing and yelling and crying and telling all your stories with such ease up there, sweet girl. Thank you for everything.