Parents of children with disabilities have been entrusted with unusually challenging situations. Most if not all at one point or another have woken up one day and thought, “How am I going to keep doing this?” We often ask ourselves during extended hospital stays, “How did my life get to this point?” When Allison and I were at Shands Hospital in Gainesville during one of Livy’s many long stays, I used to look out the window at the road leading away from the hospital and imagine just driving off into the sunset. When we were at All Children’s Hospital in St. Petersburg, I would look out the window at the cruise ships passing by and think, “Those people are so lucky. They are going on vacation and don’t have a thing to worry about.” Believe me, I was so jealous. When we were at restaurants, I would watch families walk by, the kids running and jumping, full of smiles. Every family seemed to be the perfect family. And how easy I bet they had it. They could fly somewhere for a vacation or go to Busch Gardens and not have to worry about seizures or medications or if their children would ever walk or talk.
It took quite a while for me to finally look through a different window. I started by looking at Livy. Her eyes and smile are windows into a life that is pure and a source of unconditional love. Hailey’s personality is a window into how Allison and I deal with Olivia’s situation. Kids look through the windows of their parents’ experiences to try to make sense of the world. Hailey has learned so much about life in such a short period of time.
For us, our most important window is that of inspiration. It is our chance to motivate others to do something great. Over time, we have inspired people most during Livy’s times of greatest need. This has also been our biggest test because it is at the point we are at our weakest that we learn the most about ourselves. These are the windows into our character, the places that define us. The places where fear and doubt reside and long to overtake us. It is a constant battle of courage and fear, of strength and weakness. The place of invincibility and vulnerability. I feel that each time we have helped Livy through a difficult episode, it has made us stronger and more able to inspire.
It is up to each of us to decide through which window we want to be seen. Some people choose to have a frosted window where they stay private and only let a little bit of light in. Still others choose to have blinds over their windows so they can let people in during certain parts of their lives but close off the world to others. And many choose to stay confined in darkness. That choice is up to you. Our window is transparent although there are times when we want to shut the world out, too. But we want people to know our story so we can educate others and help them to not take life for granted or too seriously. It also helps people understand disabilities. Most of what people experience when seeing a person with disabilities is fear because they have little knowledge or understanding. By being transparent, we hope to remove fear and allow others to see life from a different vantage point.
I view our situation as a gift, even as a responsibility to share with others. We are given such a small window of time on this earth to make a difference. I have always been looking for something…something that has meaning. It took me a while to find it but now that I have, I plan to use my time wisely. I will look through the window that allows me to view Livy’s life as a miracle. She has impacted more people in her 7 years than I have in 40. I hope we can do as much to inspire people as she has. In the end, if more people look through the window of hope and inspiration, than maybe we will have succeeded.