by Jon Scheinman
I once thought the role of a father meant raising my kids to be the best they can be, to give them all the opportunities to succeed in life and to support my family in whatever way necessary. A seemingly common definition that although difficult, was achievable. What I discovered when my twin daughters were born is that the responsibilities of a father are so much more. Hailey was born first and was perfectly healthy. Olivia (Livy) arrived an hour later. Soon after birth, Olivia began having seizures.
Several turbulent years passed and Livy’s diagnosis was determined to be multi-focal, partial epilepsy caused by a general brain malformation. She has been through a multitude of hospital stays including two for major brain surgeries. Both put extreme emotional and physical stress on my family and my relationship with my wife Allison, causing me to frequently ask, “Would my life be better with or without Livy?” An odd question to consider regarding my own child, but as a father with a daughter who has numerous disabilities, it was unavoidable. Our idea of normal had been twisted and completely turned upside down.
Now at nine-and-a-half years old, Livy takes three medications each day in order to control her seizures. She also takes several other medications to counteract the side effects of the seizure medications. She is globally developmentally delayed both physically and mentally and cannot walk or talk. She has an arduous feeding and medication regimen and numerous doctors and physical therapy appointments. Despite the surgeries and medications, Livy still has near daily seizures.
I often wonder in what kind of a world Livy must live. She lets us know if she is happy, sad or generally uncomfortable but we are never entirely certain how she is feeling. It pains me to think that she is in any way lonely or confused. We are left guessing if she is sick or has any type of infection. We have made many trips to the doctor’s office on a hunch that there may be an issue. Over time, our hunches are getting more accurate. We try to understand Livy through interpretation of her demeanor, facial expressions and what little verbal ability she does have. The sounds she makes usually alert us that something is not quite right.
In the bigger picture, Livy may actually say more than any of us. What she stands for and what she has overcome in her short life inspires people in ways I never thought possible. Her story of hope and the will to live often moves others to tears. She is miraculous in so many ways and I pray that she understands us when we tell her how amazing she is.
Through all the turmoil, Livy’s twin sister Hailey has grown into an amazing, caring and intelligent little girl. Her empathy for and understanding of her sister and other children with disabilities is remarkable. It is a true gift we could not otherwise have given to her. Despite the difficulties in communicating, Hailey and Livy have an extraordinarily powerful bond. As one of Olivia’s biggest supporters, Hailey asked how she could help raise money for her sister’s expensive intensive therapy sessions. Since Hailey has a passion for art, we suggested she sell her paintings and jewelry. Hailey immediately set out to create some masterpieces which she auctioned on eBay and “Livy’s Hope” was born. Livy’s Hope is now a major part of our family and is how we support children with medical needs and their families. A substantial focus has been to raise epilepsy awareness and funding for research.
So to answer the question, if my life would be better with or without Livy, I need only walk into her room each morning to see that brilliant, glowing smile. I cannot imagine my life without her pure and transcendent inner beauty. She has completely changed my idea of what it means to be a father and to love unconditionally. Epilepsy has taken a piece from me that I will never get back. Watching Livy having seizure after seizure has at times been unbearable. But I promised Livy long ago that if she keeps going, so will I. She will never travel this road alone. I will always try to give her as much hope as she gives to me and to others. I could not be more proud of her. She is a true warrior and I feel honored to be her father.
On July 25-27th, Livy’s Hope is making a Stand for Epilepsy: a lemonade stand! They are encouraging people from all over to host a lemonade stand on that weekend. All proceeds from the stands will go to epilepsy research. To register your stand, go to: http://livyshope.com/index.php/giving-back/lemonadeforlivy