It was August of 2000 and my twin babies, Nicolas and Alexa, had just celebrated their first birthday. I was five months pregnant and scheduled for a routine ultrasound. No one could have prepared us for what the doctors would say. Our unborn son, Steven, had the most fatal of all congenital heart defects. In a nutshell, doctors told us he had only half a heart, and a major secondary defect to his development. Reconstructive surgery was not a viable option, and he was only expected to live a day or two.
It was an agonizing decision, but the belief that God had a purpose for this child kept us from aborting the pregnancy. Tony and I made the decision to continue the pregnancy and donate Steven’s organs. At least his life would make a difference in other children’s lives. We prayed for strength to get us through the days and months ahead of us.
From the time we learned of Steven’s diagnosis, I began writing about the journey of faith we were on. God made his presence known several times throughout the pregnancy. Many of us believed He was communicating something powerful of hope and healing involving our unborn son’s fatal heart condition. We even had hopes that Steven’s heart might be healed.
It was a very challenging pregnancy, especially with the twins so young. Some days were filled with hope and excitement; other days filled with fear, anger, grief, and frustration. I was dealing with a God that doesn’t always make sense in a world that doesn’t always make sense. Through it all, I continued to write and express every emotion such a journey can evoke. I was not writing with the idea of publishing; I was writing out of my own need to comprehend the path we were headed down.
In our quest for understanding God’s plan for Steven, we were forced to face something bigger than life. And through this humbling experience a transformation of our own beliefs occurred. We realized that specific moments and experiences are given to us for spiritual growth and to challenge us to refine or redirect our life paths.
A few months after Steven’s death, I thought of publishing my writings in a book and giving the profits to a charity. Within days of that, I asked Tony what he thought about us starting a children’s charity. Like me, he felt there was something that was still undone and perhaps this was a way to fill the emptiness. It was then that we committed ourselves to making a difference in the lives of seriously ill or injured children and their families.
It is ironic that we have been so busy with Steven’s Hope for Children that I haven’t had time to pursue publication of the book. Regardless, one experience has led to another, ultimately changing the course of our lives. My life and my world are so different from what they were before Steven. I am so different. No longer do I live my life with blinders on, thinking that challenges like the death of a child only happens to others. The innocence that comes with not knowing is gone, but this loss of innocence has forced me to seek my part in God’s plan rather than letting my life just happen around me.
Tony and I both agree now is the time for us to give back – to use the talents we all have inside of us for the good of others. Life is short. It’s not about the toys, the money, the stuff. It’s about friends, family, and relationships. It’s about making a difference while we can. Everyone has the potential to do it – we were just unfortunate enough to be blessed with the motivation.
We are so excited about what the future holds. Many doors have opened that we never thought possible. We still miss Steven; we always will. But he has become an inspirational force for Tony & me to help others. We are thankful we got to have him, to hold him, to love him. I hope that he knows what we’re doing, how many people want to join us, and how many families and children will be impacted because of his life.
There was a time I thought Steven’s 32 hours of life wasn’t long enough to make a difference. His life was so important to me, but I feared others would forget. Now I know differently. Through Steven’s Hope for Children, he will be remembered by many of us for years to come. And the best part for me is that, in addition to helping children and their families, I also have a reason to say my son’s name every day.