(posted with permission from author)
But Sophia is my best friend and was my happy companion for 16 years, 4 months and 29 days. And they were the most extraordinary 16 years, 4 months and 29 days. And it is my honor to come up here today and be Sophia’s voice, to share my heart, to share our loss.
I knew from the moment Sophia was born, much like with her brothers, that life would never be the same again. I realized just what an under statement that may have been when I found myself sitting in the back of an ambulance less than 24 hours after she was born…Sophia was on her side, in an isolette (like an incubator) with just a little diaper on…the paramedic and I sitting next to her. That entire ride to Neonatal ICU Sophia just looked at me…stared, with these big wide beautiful eyes. There was a wisdom in those eyes right from the beginning.
Anyone who knew Sophia in her early years, may recall Sophia didn’t really talk much, she rarely cried even though we relentlessly poked her little toes and fingers, gave her shots in her legs, put tubes up her nose. She was so good, so patient, so enduring.
Sophia, despite all her medical and physical hurdles, is and was a typical child and teen…and, yet, at the same time, she was so much more.
For years, and even now that she has passed, people have come up to me and said how Sophia is a miracle, how she has surpassed everyone’s expectations, how she’s lived longer than anyone anticipated. The thing is, while Sophia may have outlived everyone else’s expectations…she didn’t outlive her own. She lived large, she lived boldly. She is courageous. She had big dreams and big goals of a life full of joy, full of laughter, full of music and full of people…
Sophia loved people…early on she would sit contently in your lap, curl up in the croak of your arm, be plunked on the counter at the nurses’ station. She was so tiny that up until she was about 3 ½ I would carry her around in a little bunting bag but always facing out…never facing in because she loved people, and she longed to observe the world around her. She just wanted to be part of the action. It didn’t matter how she was feeling, whether she was in ICU, or a music concert, or at school, camp, home…she wanted to always be with people.
As her health started to change this last year and she couldn’t go to school anymore, her iPad became her life line to the world, to people and those around her. For those of you who were Sophia’s Facebook friend…you know what I am talking about. Sophia liked everything on your Facebook feed. She loved Messenger and FaceTime. And it didn’t matter if you were working, in the car, at school…she would bombard you with calls and messages until you finally succumbed. I know her cousins that are here can certainly attest to that. Right, Kimmy? And my brother, Bill, who set a FaceTime date every evening with Sophia. Where she would end her night laughing and giggling at his antics.
As Sophia became a teenager and as her health declined, she definitely became more discerning. She had a preference…young, pretty, female. I’m not sure how my brother fit into that, but she did make exceptions. And you knew when you were in, if you suddenly felt a little tickle on your leg, or under your arm. It was Sophia’s way of saying, ‘Hey, I think you’re cool, I want to be your friend’.
But when you were in, you were in. Sophia loved you no matter what. You will notice the buttons that were handed out, and on the schedule for today…has, in Sophia’s own handwriting, Love Sophia. Every time Sophia posted to Facebook, or sent you a text, or message, or even in her communication via iPad with her nurses, she always signed ‘love sophia’. It started to get autocorrected to LOVED Sophia…so every time she signed off, the last words she said were LOVED SOPHIA.
And it fits…loved Sophia. She loved large, she loved boldly, she loves courageously.
Everyone here today has in some way, been touched by that love. Either as a volunteer, a clinician, a nurse, through school, as a peer, through her brothers, or through us as her family and friends. There are a lot of people here in this space, and Sophia shared her life and her love with each and every one of you.
And while she lived large and lived boldly…the last few years, her world became smaller. Sophia’s body was being impacted in ways she did not like. And this past year, when she went blind her world became even smaller.
But what kept her going, beyond sheer determination and stubbornness, was her ability to see and feel the joy in every day, in any moment, with whomever she was surrounded by. And it’s why the auto correct LOVED Sophia resonates…she was loved, she was joy. And everybody here today loved her and contributed to her joy.
The last three weeks of Sophia’s life were difficult. There was not a lot of joy. But there was a lot of love. And even when she was screaming ‘I don’t want to be here”, “I’m done”, “I hate you” to those around her…she was loved, unconditionally, tenderly.
And one of the most important and hardest things I’ve ever had to do as Sophia’s mum was help her let go. She held on because she loved, and in the end she was able let go because she was loved.
We have all learned something through our touch point with Sophia. For myself, as her mum…as her caregiver, her companion, I have learned that despite the pain, despite the discomfort, despite the world changing around you or maybe your body failing…you love. And that love will turn into joy, into laughter, into courage. You will live large; you will love boldly…
Sophia is my best friend and it is my privilege to love my beautiful daughter and to be loved by her. There isn’t a moment that goes by that I don’t miss her terribly, longingly. I am forever changed.
Her remarkable legacy will continue…in me, in her brothers, in my brothers and sisters, her cousins…and in everyone here today, who Loved Sophia.
Portrait of Sophia (Katarina Thorsen, 2016):