Hope. Merriam-Webster.com defines hope as “expectation of fulfillment or success.” Expectation… Success… you can see why I have this “thing” with hope, right? Interestingly, hope always seems to be portrayed/associated with light and light filled things and peaceful stuff… but I also envision hope as strength and muscles and such. After all, in my world, hope has to carry people a long way.
A few months ago, I posted this picture on social media and took a survey.
I was interested to know if people thought this picture brought about peace or stress. I also use it in one of my popular keynote presentations. The social media survey stats reflected almost the exact numbers of my live presentations: 90-95% of folks say the picture is peaceful to them.
“Must have been a beautiful vacation,” someone commented. “Aw how sweet,” wrote another.
This photo inspires peace to so many… my guess is that none of them have experienced a rare disease diagnosis.
For me, and for millions of others that receive a rare disease diagnosis, that scene on the water is the horrific scene of diagnosis day. Nineteen years ago, on my family’s first of two diagnosis days for a rare blindness , we were told, “Your dreams for your son are gone. He will go completely blind. There is no hope. Good luck.”
“There is no hope.” Hopeless. That was our future. It was as if my little family was put in a canoe that we had never seen before, with no instruction on how to paddle or navigate the water. The sun was setting on our dreams and our lives. Darkness was coming and we had no idea how to stop it or how to survive in it.
If hope is the expectation of success, hopeless is being crushed by a real life nightmare. And that’s exactly how I saw the situation as I held my tiny blind son with absolutely no resources of how to raise him.
Hang in there… my story gets better. I am actually one of the lucky ones. You see, very soon after that nightmare moment, my little family was connected to a doctor that taught me the first maneuver in steering the boat: she connected me to an organization that would introduce me to other parents in a similar boat, navigating the same waters. (You can read more about that in my introduction chapter of Thriving Blind.)
One connection to one group full of resources. A starting point for me and my baby that was blind. I started to see a crack of light in his future. I stopped crying every single minute of the day. I started to have hope.
Connecting with other Moms like me that could teach me what I needed to know about raising my blind son gave me hope that he’d actually have a quality life. Seeing other children like my child succeeding without sight gave me hope that my son would succeed too.
Hope gave me a new vision of his future. Hope gave me the energy to get started and still fuels my energy to keep going.
[bctt tweet=”Hope gave me a new vision of his future. Hope gave me the energy to get started and
still fuels my energy to keep going. #ThrivingBlind #Hope”]
Where hopeless is the picture above with the sun going down and darkness inevitable, hope is the picture here: a harbor of light and energy and resources and tools…. All in one place to equip my child to get going on his path to get to the top of his mountain of dreams that awaits.
Here’s my burning question: What if…. All doctors were charged with directing patients and their families to a “harbor” full of other patients and families in similar boats to exchange resources and information on how to navigate the diagnosis?
I have seen what hope and resources have done for my family. I can only imagine how different the journey would be for the millions of patients living with 7000 rare diseases.
[bctt tweet=”I have seen what hope and resources have done for my family. I can only imagine how different the journey
would be for the millions of patients living with 7000 #rarediseases.”]
Are you someone that is sending your patients into a hope filled harbor? Are you someone that is providing the harbor, or the resources there for patients and their families? Are you looking for your harbor, the resources to give you or a family member hope? Please let me know. You can reach me at SmedTalk@gmail.com
And if you are as obsessed as I am with harbors, please send me photos of your favorites!
Kristin Smedley is a 2019 Champion of Hope Award winner. She is an author, non profit leader and TEDx speaker. She originally planned to be a third grade teacher… and then two of her three children were diagnosed as blind. Kristin now shares her journey of raising her kids to not just survive challenges, but to thrive! She speaks around the globe regarding blindness and resilience, and she just launched her new series teaching people to SEE: Set Extraordinary Expectations! Watch her TEDx talk here and order her new book here. If you are interested to have Kristin speak at your upcoming event, email her at email@example.com or contact her here!