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.