Most of us will face a traumatic experience at least once in our lives. Where we feel we can no longer keep going. Where every day seems like it is a fight just to get through. We wish our days away hoping for an answer. Am I on the right path? Am I strong enough to make it? How will I keep going? We have been in that very same position with Livy a number of times. For years, we didn’t know how we could function in a normal capacity ever again. We were angry. We were heartbroken. We were devastated, confused and lost all at the same time. And most of all, we were so sad for Livy and all she went through.
Our last major hospital stay due to uncontrolled seizures was in April of 2010. It had been a year since Livy’s hemispherectomy operation. We were gradually starting to see her seizures get worse. We asked ourselves, “What are we going to do this time? She can’t have any more surgeries?” Allison called me from the pediatrician’s office since we always follow protocol to make sure nothing else is going on. Shortly after the doctor assessed her, he said, “Get her to the hospital, now!” and off we went.
We were admitted and over the next several days, Livy got worse and worse. The seizures came at a violent pace. With arms outstretched and stiffened, her little face contorted and eyes blinked rapidly. She held her breath and I watched her stomach collapse in on itself. When finally she was able to take a gasp of air, she let out a defeated whimper and would lay there lifeless. I didn’t think it was possible for someone’s heart to shatter so frequently but with every new round of seizures, I ached for her and was crushed.
This went on for several weeks. During this visit, we were asked for the second time in six years if we wanted to sign a DNR (Do Not Resuscitate). We met in a board room with the entire team of doctors, nurses and psychology staff to discuss our options. We were told that this could potentially be Livy’s life for as long as she lived. To me, that was not a very good option.
After our meeting, Allison and I went back to Livy’s room, kissed her on the forehead and embraced each other. We collapsed onto the couch in tears and sobs. Was it really the end? Would Livy not come back this time? Over the next several days, Allison was told by the doctors that she needed to go home. She had become so distraught that they feared for her health. I took over and tried to separate the intense emotions I was feeling from the job I had to do which was to make sure everything was done for Livy that needed to be done.
As I sat at Livy’s bed side and watched her get a moment of sleep after being given extra medication to stop her seizures, I searched my mind for what I could do. With a lack of sleep and emotions raw, the brain tends to wonder in escape. Only for me, this moment led to the idea of what Livy’s Hope could be. For years I had helplessly watched Livy and many of her friends and classmates wither under the weight of epilepsy. But then they miraculously recovered and their brilliant, pure smiles returned. I believe this was possible because they never gave up and neither did their families. Never giving up hope has been incredibly powerful for us and the only way we have made it through when all seemed lost. Creating an organization based on hope that is able to inspire others and to give back was what I envisioned. I desperately wanted to regain a sense of control that had been lost because of epilepsy and I wanted the means to help Livy and others like her.
Livy did recover from that hospital stay and she has never given up since. She has fought every day through the 1,000’s of seizures. She has endured broken bones, falls and a permanently dislocated hip which constantly causes her pain. She cannot speak or feed herself or tell us what hurts. But she can smile, show emotion and love. She has taught us all how precious life is and that every person has purpose. She is the reason for Livy’s Hope and she is the spirit that lifts our hearts to new levels. She has given us a new direction; one that is filled with inspiration and a desire to help others.
Hailey’s life has also been changed because of Livy. As twins, I would expect there to be a special bond. But I never expected there to be the amazing relationship that has developed. Hailey always includes Livy in what she is doing. She sees, in Livy, a sister, a friend and a hero. Hailey admires Livy for what she has endured and is the first one to comfort her when needed. It is because of that love that Hailey has the ability to help others and to recognize the community’s need for hope and inspiration. She spreads her happiness from person to person and teaches us that we can all make a difference. She helped to create Livy’s Hope and it started with the sale of her first painting on eBay. As you will see in the video, Hailey is as much a part of Livy’s Hope as Allison, Livy and I are.
As Livy’s Hope has evolved, we realize more each day the strength that comes from bringing people together. Some we have met have similar stories. Some are inspired by our story and want to get involved. But all have one thing in common. They want to help others. Our mission is to support children with medical needs and their families and to motivate as many as we can to do the same. Winston Churchill once said, “We make a living by what we get. We make a life by what we give.” We want to make amazing lives for us and all those who become a part of Livy’s Hope.
So if you ever find yourself in a situation where all appears lost or you don’t think you can take any more or your emotions overwhelm you, remember, “Don’t Give Up.” Instead, turn to helping others and making a difference. Do everything you can to “Give Back.” Your life will be changed forever.
This essay is part of the Messy, Beautiful Warrior Project — To learn more and join us, CLICK HERE! And to learn about the New York Times Bestselling Memoir Carry On Warrior: The Power of Embracing Your Messy, Beautiful Life, just released in paperback, CLICK HERE!