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Joy nonetheless

A wise friend of mine posed one of the most haunting questions I have ever heard: "If you only had one hour to spend with your child, would you take it?" My answer was "Yes," and it turned out to be one of the most profound and joyful decisions of my life. My precious daughter, Gianna Therese, lived only one beautiful hour; this is a reflection on her life's impact.

At 20 weeks gestation, Gianna was diagnosed with anencephaly, a neural tube defect in which the two hemispheres of the brain and the skull do not develop. My wife, Emily, and I were told by our doctors that at most, Gianna would likely only live a few hours or days, if she even made it to term and survived the birth.

Rather than allow the "what if's" and negativity to overtake the time I spent with Gianna, I tried every day to focus on the joy of her life and the opportunity God gave me to be her daddy. While we certainly mourned the prognosis for our daughter for another 14 weeks and four days until her birth, we bonded during this brief time and created many special memories with her that we will always remember. I have heard consistently from parents of children with disabilities that their children are such wonderful blessings; it is hard to fully appreciate this truth until you live it yourself. Although Gianna was different and unappreciated as seen through the worldly lens, she taught me two of the most important lessons any person has taught me in my 28 years of life.

First, Gianna helped me to truly appreciate the beauty of being a Catholic. In my research on anencephaly following Gianna's diagnosis, I found that the U.S. Conference of Catholic Bishops released a statement entitled, "Moral Principles Concerning Infants with Anencephaly" Sept. 19, 1996. I was deeply touched that the church spoke in defense of the dignity of children with my daughter's condition while many other voices in our world dismiss and discard children like Gianna. Throughout our journey, we had so much support from the church and Embracing Grace, a peer support ministry for families that receive adverse prenatal diagnoses, sponsored by St. Patrick Church in Fredericksburg. Our parish ultimately served as an extended family for us. In a powerful way, I can say Gianna helped me to feel both blessed and proud to be a member of the church founded by Jesus Christ and to know that the church is always there for me, no matter how dark my life may be.

Second, and perhaps most important, Gianna gave me a better understanding of the love of God. In his letter to the Romans, St. Paul tells us, "For I am convinced that neither death, nor life, nor angels, nor principalities, nor present things, nor future things, nor powers, nor height, nor depth, nor any other creature will be able to separate us from the love of God in Christ Jesus Our Lord."

To paraphrase St. Paul in light of my journey: Neither time, nor space, nor sickness, nor health, nor any other disability could separate me from the love I have for my child. What a beautiful gift to learn that my love for Gianna is infinitesimally small compared to God's unconditional love for each and every one of us.

I may never understand in this life why God chose my wife and me to care for one of His special children, but He was so generous to give us what He did: 34 weeks and four days with Gianna in the womb and one hour with her outside the womb, along with the opportunity to give her the gifts of baptism and confirmation.

Our journey with Gianna was not always happy, but joy abounded throughout, with the ultimate joy being our knowledge that she is with Our Lord in heaven. I urge my fellow Catholics to provide love and support to families of children with adverse prenatal diagnoses. Each of these children has a unique message to teach us, and we must give them the opportunity to do so. Thank you, my sweet Gianna, for teaching me.

Macedonia, a parishioner of Holy Spirit Church in Annandale, is a graduate of Bishop O'Connell High School in Arlington.

© Arlington Catholic Herald 2015