"My Story" Magazine Article
by Jonathan Scheinman
I once thought the role of a father meant raising your kids to be the best they can be, to give them all the opportunities to succeed in life and to support your family in whatever way necessary. 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 arrived an hour later. Soon after birth, Olivia began having seizures.
After several turbulent years, Olivia’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 our family and my relationship with my wife Allison, causing me to frequently ask the question, “Would my life be better with or without Olivia?” An odd question to consider regarding your 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 six-and-a-half years old, Olivia still takes four medications each day in order to control her seizures. She is globally developmentally delayed both physically and mentally. She has an arduous feeding and medication regimen and numerous doctors and physical therapy appointments.
So to answer the question, if my life would be better with or without Olivia, I need only walk into her room each morning to see that glowing, brilliant smile. I can not imagine my life without her pure and transcendent inner beauty. She has transformed my idea of what it means to be a father. Our family has grown stronger, and through our faith, we have overcome seemingly insurmountable challenges.
Through all the turmoil, our daughter 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 Olivia have an extraordinarily powerful bond that many twins share. As one of Olivia’s biggest supporters, Hailey asked Allison how she could help raise money for her sister’s expensive intensive therapy sessions. Since Hailey has a passion for art, Allison suggested she sell her paintings and jewelry. Hailey immediately set out to create some masterpieces which they auctioned on eBay and “Art by Hailey” was born.
As a father, I could not be more proud of my daughters. They inspire me to never back down in the face of fear but to forge ahead with courage and determination. It would have been easy to have given up and fade into the background like so many fathers of disabled children do. But I chose, using a sports analogy, to stay in the game. This is my team and I contribute each and every day. No one person should have to craft the winning strategy from which the entire family will benefit. Will Olivia ever play a sport? Probably not. But in the sport of life, Olivia consistently gives her best. She is a true winner as is each and every child fighting against unthinkable odds. I will be there every step of the way for all of her victories, no matter how big or small they are.
Happy Father's Day!!
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