6 minute read
It is Faith
by Jana Monaco
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“How do you do it?” is a common question that parents of children with special needs hear from time to time. My response has always been, “It is faith.” My faith in God equips me with the resources and strength I need for what He calls me to do as a Catholic woman. It is a concept that my husband and I have instilled in the lives of our four children, having raised and educated them in our Catholic Faith. We live our Faith and emphasize its significance in our lives along with the importance of the Sacraments and how they help us grow closer to Christ.
The COVID-19 pandemic and all the scares and uncertainties that come with it is one of those times in life where we rely on our faith. Life as we knew it has changed. Where we go, who we see and what we do are quite different now. We have all had to forgo so much that has filled our lives. How we attend Mass is also different, but the Mass itself has remained the same. That’s because through it all, God has not changed. He is still here ever-present in our lives. With the season of Advent upon us, we are reminded of Christ in our lives as we remember his coming into the world in a manager that first Christmas so long ago. It brings hope and joy as we celebrate his first coming and prepare for the next, reminding us what we truly need in this life. I know this because my family and I have experienced our own personal hardship that impacted our lives much like the current pandemic and it forever changed our lives. We quickly learned then that God was still with us and Christ was a constant presence in our lives.
We endured a terrible tragedy with Stephen, our third son, nineteen years ago when he was just three-and-a-half years old. I found our sweet, loving, energetic little boy unresponsive early one morning. I held my son’s limp little body in my arms as I dialed 911, not realizing that in less than 48 hours Stephen would be in a coma on life support fighting for his life. The diagnosis of isovaleric academia came too late to prevent severe brain damage. Imagine being told, “If your son makes it through the weekend, he won’t be the same little boy you knew and loved” and having to tell your other children that their little brother is going to die. All we could do was sit and pray and wait with Fr. Barkett, the pastor from our parish, St. Elizabeth Ann Seton, by our side and surrounded by family and friends. The hospital chaplain would always come by his room and after weekend Mass he would tell me, “Keep praying! God listens to nagging mothers!”
Stephen remained in a coma on life support for three weeks and with an abundance of prayers and excellent medical intervention he survived his metabolic crisis. However, it left him with severe intellectual and developmental disabilities, seizures, a gastrostomy tube, cortical vision impairment and a host of medical complexities. After four weeks in the hospital and six weeks in a pediatric rehab center, we brought Stephen home to a very different life for all of us. I still remember looking around his room at all of the medical equipment that first night home and sobbed. Life would never be the same…just like now with the pandemic. We had so many fears and life was definitely full of uncertainties. We lost our normalcy and the way we knew life. The devastation of what Stephen endured was compounded by the realization that it could have been prevented had he been screened for IVA at birth.
What we did know was that despite the sadness, hardship and profound loss and changes, God never changed. He was there with us. It was a time when we really came to grasp the idea that Christ was walking with us each step of the way. And one of the ways He did this was through our parish family. Our parish of St Elizabeth Ann Seton has surrounded us with prayer and support in countless ways.
Grounded in our strong Catholic Faith we found a way to go on with life. We welcomed our daughter Caroline just one year later who was also diagnosed with the same disorder before she was even born. We were now raising two children with a serious metabolic disorder, including one with intellectual and developmental disabilities, and two other sons who sought some sense of normalcy from the life we had. While it seems incredibly daunting (and, yes, we have felt that way), we have constantly turned to our faith that reminds us of God’s Hand in our lives. As Romans 8:28 says, “And we know that God causes everything to work together for the good of those who love God and are called according to His purposes for them.”
God has used Stephen and our family’s experience for greater good through my advocacy for expanded newborn screening legislation at the state and national level to help prevent other babies and children from sharing Stephen’s fate. He has called us to serve Him in our parish in various ministries. Our two older sons have been altar servers while growing up and one has been an usher along with my husband and daughter. I have served on
the Human Concerns Committee and have had the honor of serving Christ as an extraordinary minister. Together with Stephen, for several years I have presented at our parish Confirmation retreat on the importance of a relationship with God and His presence in our lives while sharing our family story.
As we go through life, we are constantly reminded of the endless “what could have been” moments in life with Stephen, while cherishing those first 3-½ years when we watched Stephen grow and develop his fun, loving personality, strong independence and infectious charm. Rather than dwell on the loss, we have chosen to embrace the opportunity to take the series of events in his life and appreciate God’s greater purpose for him--one that has and will continue to impact endless children and families nationwide in the years to come. That same attitude is what helps us through the current challenges with the COVID-19 pandemic reminding us of God’s eternal presence in our lives. The more we live our faith, the more we feel His presence. The season of Advent is a wonderful guide during these trying times by shifting our focus from the struggles of life to the hope and joy found in walking with Christ. Jana Monaco, wife, mother, rare disease and newborn screening advocate, is married to Tom Monaco for almost 34 years. They have four children-- Nicholas 29, Alex 26, Stephen 23 and Caroline 18. More about the family’s journey is here: http://www.stephenamonaco. org/ Jana recently received the 2020 State Advocacy – Patient/Organization award from the Rare Disease Legislative Advocates group.
