As a father of two daughters with rare conditions, I’m no stranger to adversity. We’ve walked through impossible trials, battling fear, pain and sadness along the way. But these experiences have led me to understand the power in my ability to control how I respond to situations.
My journey began nine years ago when I learned that my daughter would lose her left arm and right leg due to an uncommon congenital abnormality that occurred in utero. The days leading up to her birth were physically and emotionally challenging as the fear of the unknown haunted me. I was devastated knowing that my daughter would have a long road ahead of her. But that pain vanished and I was filled with love and gratitude the moment I held my daughter Eve in my arms – she was healthy, smart and beautiful. I knew that the strength and determination that spared her life would enable her to change the world.
The strength I had built following Eve’s birth was put to the test during the pregnancy of my second daughter as doctors informed us that she had suffered extensive brain damage as a result of contracting congenital cytomegalovirus (CMV), a virus that for most people is not a serious health problem but can cause serious complications to babies if infected in utero. Once my daughter Felicity was born, her doctors were certain the brain damage would impair her hearing and cause internal complications, shredding the ounce of hope I had been holding onto. The challenges of raising a child with a prosthetic leg suddenly became miniscule as I tried to comprehend the reality of our future caring for a child who we were told would never be able to use her brain, body or words. This realization is the moment that my wife, Katie, and I promised each other that we’d always choose joy – even during our darkest moments.