What do you do when one of your heroes tells you they are dying?
Brianne didn’t put it that way, of course. She simply called to say she was going into hospice; but she knew we had enough experience with hospice to know what that means – She has a life-threatening illness and has decided not to fight it.
That didn’t sound like Brianne.
Brianne has been fighting the odds with every breath, every moment of her life. She was born with thirteen broken bones and diagnosed with a rare bone disease called Osteogenesis Imperfecta (OI). They said she only had a few hours to live and called the hospital priest to give her the last rites.
But somehow, Brianne made it through the night. She kept on fighting through seemingly endless days and nights, defying the odds, until they said she was strong enough for her parents to take her home. She was carried out of the hospital on a pillow, popsicle sticks taped to her limbs as makeshift splints. Her family was afraid to touch her for fear of breaking a bone.
Once she was home, her parents went looking for help and found a group of physicians starting a research protocol for children with OI. Brianne was so fragile she could break a bone by sneezing, but they encouraged her to learn to walk and challenged her to grow. And grow she did, graduating from American University and getting her masters degree from Marquette University.
But it has never been easy.
For 36 years, Brianne has faced one challenge after another. She has had at least one surgery for every year of her life and has had – in her words – more broken bones than Evil Knievel. But each time, whatever the challenge, she has taken it on with courage and humor.
In the process, Brianne has recalibrated my sense of what a hero looks like. Thanks to her I have learned it has more to do with the size of your heart than the size of your body; more to do with the strength of your spirit than the strength of your muscles. It’s not what you have that matters but what you do with what you have. What you give to the world is more important than what you take; how you affect others, how you make them feel, is more significant and has a more of lasting impact than any material gift you can give them.
So what now? What do you do when the doctors say there is nothing more you can do? Where do you go when they say there is no place for you to go? Brianne was saying she is prepared to go home.
At times like these – as I can testify from a couple of close calls – you take stock of where you are and see life as seamless. It stretches forward into the future and back beyond the boundaries of time. There is no beginning. There is no end.
You realize what Einstein meant when he said matter can neither be created nor destroyed. Something cannot become nothing. Something simply becomes something else. The same atoms that dance in us dance in everything else in the universe. When we die, nothing ends. The best part of our selves just learns a new dance.
What remains are footprints in time and fingerprints on the lives of those we have touched. As long as we are remembered, we are loved. As long as we are loved, we are indispensable and immortal.
In my heart and head, Brianne will always be with me. I suspect there are thousands more who can say the same.
This is so beautiful and I am thankful you wrote this. Brianne is my sweet cousin.
I’m so sorry. She had so much to teach us. A lively sense of herself. What a remarkable young woman.
Death is a part of life, special friends leave very deep scars in our hearts . but memories live forever ————- Well said Bill
Brianne has always been one of the best people that you ever introduced me to. She is like a poker player who knew exactly how to play her hand. She didn’t get aces in her bones, but she knew how to make a winning hand with her personality, friends, family, and spirit. Go Brianne!
At what some might call a diminutive stature, Brianne has always the largest heart, greatest personality, and strongest life force of any person in any room I’ve been in with her. At a conference in D.C. many, many years ago, I shared a bit about what was going on in my life at the time. Brianne emailed me afterwards to say that I was brave to share what I did and that I was an inspiration to her. Since she is hands down one of the most inspirational and bravest people I’ve met, this was ridiculously high praise. I printed the email and used it to mark the page that Brianne’s story in the book “The Courage to Give.” Any time I was feeling down about the state of my life, I would open up the book to Brianne’s story and her encouraging email. After all these years, I still have the book and marker. When Brianne leaves this world she’ll do so in much the same way that she came into it, with strength and an indomitable spirit. Her words, light, and love will always be with me and everyone she ever touched.
Brianne=LOVE & Brianne touched so so many people! Brianne made a difference!
Dance Brianne, Dance!!!!!
Thank you!
Bill, Thank you for sharing such an eloquent story of heroism. Before Kid President, we had an equally large character who inspired us to give beyond our wildest ideas, live and laugh life to the fullest and serve others with abandon. I can’t imagine Brianne bound by a condition such as OI, much less a hospital. She has always been free, full of life and love- a lifetime worth of inspiration in just one interaction. I’m so glad that she has so many wonderful, loving and faithful friends and family. What a life! We love you Brianne!! I’ll never forget the time you threw yourself over the little girl caught in the path of an avalanche of boulders and came out with only a broken leg! Heart of gold, steely determination! LOVE 🙂
Beautifully written story of such a beautiful soul. Brianne touched everyone her knew her. I hope your dancing sweetheart💕
I remember Brianne standing at my bedside, her enthusiasm, maturity, encouragement in light of her own disabilities was so inspiring. It gave me hope when my caldron was empty. Somehow, after a third surgery, I survived. Survived to go to the gravesite of my beautiful, talented, successful 23 yr. old son that decided on this date, today, 4 yrs. ago to take his own life. Such a contrast, I never saw it coming and he had, or at least it appeared that he did, have great health, a high honors degree in criminal justice, and recently became an official police officer. So unexpected. In contrast Brianne beat all odds with every broken bone or illness and fought a hero’s battle each and every time. Life takes such strange turns and I do know the greatest challenge is surviving the loss of a child. My heart goes out for all of you, you are an incredible family. The obstacles you have faced are beyond anyone’s imagination. Yet you will all continue to dance together, victorious. in life and in death. What an elegant tribute to a beautiful, petite, but mighty presence.
Brianne has and always will be the epitome of strength, courage, love, radiance, and wisdom.
Thank you so much for your beautiful description of what so many of us are feeling right now. I met you in 2001 while Brianne and I were both students at American University and interning at Heart of America. Brianne and I became close friends at college orientation and even shared a suite by our senior year. We bonded over home sickness, our obsession with the X-Files, and our desire to make the world a better place.
Many people knew Brianne for her multiple achievements and unfailing spirit. I was glad to be one who also experienced her wicked sense of humor. I know Brianne is up in heaven, telling tall tales about shark bites and alligator encounters with a straight face to all the souls who greet her.
My condolences go out to her family and many friends for the loss of the one and only Brianne Schwantes. Let’s all aim to spend our lives inspiring others but taking ourselves a little less seriously, just as she would.
Terry, I am so sorry for your loss. This is so beautifully written. I remember the first time Crystal and I met Brianne, what a special person she was. I am sure her and Crystal are dancing in Heaven with so many of our wonderful O.I. friends who have passed. If you ever want to talk I am always here and would love to hear from you. My number is 435-467-1934 My thoughts and prayers are with you and your family.