I stand with my arms braced against the sink staring into the mirror at myself in the men’s bathroom at All Children’s Hospital in St. Petersburg, Fla. I am haggard with red eyes and a dazed, confused look about be. It’s 8:00 on the morning of December 15, 2004. I whisper, “This should be the happiest day of my life. I am a first time dad.” Instead, tears of grief and fear, not joy, stream down my cheeks. My wife, Allison, gave birth to our twin daughters, Hailey and Olivia (Livy), only 4 hours earlier.
I have just witnessed Olivia having her first grand mal seizure in the neonatal intensive care unit. She is only hours into this world. Later, a doctor would tell us, “She may not live to be a year old.”
After a month at All Children’s, we traveled to Boston Children’s Hospital to see a specialist. We had only been there a short time when we were approached by the staff and asked, “Have you considered a DNR [do not resuscitate].” Livy’s condition worsened so we had her baptized in the hospital in case she never made it home. The doctors gave us a diagnosis of generalized cortical dysplasia, a brain malformation. Remarkably, 3 months later we flew back to Florida and All Children’s with Livy subdued by 5 anti-seizure medications while we waited for a room to become available at the Woodside Hospice House of Pinellas. We were completely unprepared both emotionally and physically to care for such a medically complicated child.
Livy resided in the hospice house for four months during which we visited her regularly. The nurses took very good care of her. It was surreal to have a perfectly healthy, thriving baby at home and to have the other fighting for her life. We were living two very different worlds, torn apart by both known and the unknown. We questioned, “Would our little girl survive? What kind of existence would she have? How would she fit into our cookie cutter life filled with typical expectation and dreams?”
Livy was finally stable enough to come home in September of 2005. The bedroom designed for two at last had its second occupant. As we watched them sleep in their cribs only a few feet apart, we basked in the glory of the moment pushing away the nagging tentacles of doubt that told us our lives were going to be much different that we had planned. We both concurred, “This is the way it should be.” However, we were not prepared for what was to come.
Epilepsy, a horrible neurological disorder that is persistent in the lives of more than 65 million people worldwide, was Livy’s worst enemy. Overtime, her seizures became more frequent surpassing one hundred per day.
Our saving grace came in the form of a pediatric neurologist at Shands Hospital in Gainesville, Fla. He told us, “Livy is a candidate for surgery that could potentially alleviate her seizures.” In March of 2006, Livy underwent her first brain surgery during which portions of two lobes from the left side of her brain were removed. For six months, she was seizure free. But then her seizures returned in earnest. She underwent her second surgery in February of 2009 which was a very rare surgical procedure called a functional hemispherectomy; a procedure in which one side of the brain is disconnected. She spent 3 months in the hospital during recovering from surgery, a severe flu and weeks of post operative seizures.
We took our baby home not knowing what to expect. Allison and I were like two soldiers coming back from a war zone. Three months of staying in a hospital and watching out child suffer through weeks of viscous convulsions pre and post surgery left us exhausted, defeated and in emotional turmoil. Our only solace came from the spirits of our little girls: one who had been to hell and back but somehow still managed to smile at every chance she got and her sister Hailey who regularly provided comic relief.
If I was asked at that point what I expected from life, I would have replied, “How does the joke end?” I often wondered, “How can life be so cruel to a child and give her such a small chance to live a normal life?” The odds were against all of us at that point. However, if I was asked the same question today, I would answer in an entirely different fashion.
Since Livy’s second surgery, she has vastly improved. However, she still has many disabilities due to her brain malformation including her persistent epilepsy as well as CP [cerebral palsy]. She is not able to talk, walk or crawl and is completely reliant on her family for care. It took many years and soul searching to realize how blessed we were. She gave Allison and I a new perspective and transferred us in countless ways. She served as the example of strength that encouraged us to become the people we never thought we could be, not because of her disabilities, but because she inspired us with her sheer will, her pure heart and her magnificent smile.
Livy has had a tremendous impact on Hailey as well. She is growing up in a very different environment than Allison and I did when we were her age. Medical supplies overflow from our closets and Livy’s equipment fills the corners of various rooms. A nurse comes monthly to check Livy’s blood levels since she is fed from a tube in her stomach and has a precisely managed diet of Pedicure and supplements. During breaks from school, Hailey often goes to Livy’s physical therapy sessions where she encourages the kids who attend. “Come on. You can do it,” Hailey will exclaim. She has visited Livy during her hospital stays on numerous occasions. But when we ask Hailey if it bothers her, she responds, “I wouldn’t have it any other way.” She deeply loves and respects Livy and is one of her most ardent, proudest supporters and advocates.
Throughout our journey, we have been helped by so many kind and generous people. We came to a point where we weren’t satisfied with sitting idly by when there was so much we could do to help others and to give back. We have experienced the overwhelming sense of loneliness and helplessness that accompanies children and families in similar situations. We found that the best way to reach out to others was to create a website detailing Livy’s story so we could share what we had been through. We called it Livy’s Hope. We have filled the pages with her history and information about her school, equipment and therapies. Writing about our experiences in our blog has been as therapeutic for us as it has been helpful to others.
Livy’s Hope also became a place where we could raise money for Livy’s therapy sessions. One day, when overhearing a conversation about how expensive Livy’s physical was, Hailey said, “How about I paint a picture to sell on eBay?” The painting sold for $60 and was the beginning of something remarkable. Hailey went on to design and sell numerous paintings, dozens of bracelets and personally designed note card sets to benefit her sister.
At 9 years old, Hailey and Livy play an integral part in Livy’s Hope, which is now an official organization that gives 100% of its profits to children with medical needs and their families through Partners of Hope. The girls present the story of Livy’s Hope with us at schools and conferences. Our message is one of perseverance, acceptance and service. We explain to audiences, “Life can be incredibly difficult. But if you don’t give up, treat others the way you want to be treated and give back, you can make a tremendous difference.”
Life it seems is seems is a continuous search for something meaningful. Becoming parents was supposed to help us in that pursuit, but Hailey and Olivia have done so much more. They have touched the lives of people far and wide and have given us true meaning and purpose in helping others. They have taught us that it is okay to possess different dreams in a society that raises its citizens to conform. They have assisted us in choosing a path of service no matter how hard it may be.
When I look in the mirror today, I often think back to the individual I was the morning the girls were born: scared, lost and broken. My eyes now tell a different story, one of dedication and determination. They are filled with hope and inspiration. When I cry, the streaming tears are filled with pride and an unwavering commitment to a family completing an amazing life’s work.
To help or get involved with Livy’s Hope, visit the Livy’s Hope website [www.LivysHope.com] and our Facebook page [Facebook/LivysHope] and become a part of our story. We also invite people to visit our online store, sign up for our blog and newsletter or like and share our Facebook page or contact us for more information.