Tracy’s Story


In 2005, the year after we married, my husband Joe and I were excited to welcome a baby due that November.

At our 20-week sonogram, the scans showed abnormalities in the brain but were inconclusive as to the extent. A neonatal neurosurgeon said it could be a blockage in the spinal column causing a spinal fluid buildup within the brain. Another doctor shared that we could terminate, but only for about a week or two more, as it wasn’t allowed after 22 weeks at the time. We never considered that option as our baby’s worth wasn’t dependent on their health status, so we were left to wait and to love. 

Thanksgiving came and went, and by early December, I was well overdue, so we scheduled an induction for December 12. Grace was born around 10 pm to a flurry of doctors wondering what was ailing her. She was not responding the way a healthy baby would, and doctors were stumped about her condition. The next day, she was transferred to a Children’s Hospital with Joe while I stayed back at our local hospital to recover. 

learning OUR DAUGHTER’S diagnosis

Four days later, we sat down with a team of doctors and support staff and learned that our daughter had Walker Warburg Syndrome (WWS), a genetic ailment that affects 1 out of 65,000 live births. It is estimated that there are only 500 people living with this syndrome at any one time because of the short life expectancy.

Grace’s brain stopped developing around week 13 of gestation, while the rest of her growth continued as expected. Because the brain is the “command center,” so to speak, all major body functions underperform. These functions include body temperature regulation, suck and swallow reflexes, digestion, breathing, and muscle tone. While she was in the womb, I was able to maintain all of that — but as soon as she was born, she was unable to support herself. Doctors gave her approximately one month to live.

making the most of the time we had

Grace went on to live for 18 days before succumbing to sepsis on December 30, 2005. For her entire little life, we poured into her. We sang to her, held her, read to her, had her baptized, and even hosted Santa for Christmas. She also suffered, as we all have and will in our own lifetimes. But through her life, we were taught so much: What it means to rely on others. What it means to be drawn closer to God in times of trouble. What it means to really pray. What it means to persevere. What it means to value all life, not just those “perfect” or wanted.

We also learned early on that WWS was a recessive genetic disorder that, unbeknownst to us, my husband and I both carried. That meant that each time we got pregnant, we had a one in four chance of having a baby with this syndrome. This news brought a heaviness to trying to have children that wasn’t there before. 

gaining new blessings And enduring another loss

Joyfully, our healthy baby girl Lauren was born 18 months later. And when she was two years old, we found out we were going to have another baby girl with WWS. This time, we knew what we were dealing with throughout the pregnancy. We made arrangements for her funeral while still pregnant since we weren’t sure how much time we would have with her.

In December 2009, four years and two days after Grace’s birth, Maryn arrived. The syndrome was much more severe for her, and she passed within the hour. Lauren was able to meet her for a brief, lovely moment. We held and loved this baby for hours before handing her over to the sweet nurse who shared tears with me at that moment. We had less time with Maryn, but, nonetheless, her life was filled to the brim with love.

pursuing truth, love, and goodness

Throughout our early years of starting our family, we kept going back to Grace. We asked ourselves if it was worth trying for another baby after the strife we went through with her. The answer was always undoubtedly, “Yes!” Our lives are richer and our love deeper because we knew her and because she simply existed. As parents, none of us know what our children will endure in their lifetime. To be open to life and joy is also to be open to death and suffering. They are completely intertwined. One of my favorite quotes is from Pope Benedict XVI:

“It is when we attempt to avoid suffering by withdrawing from anything that might involve hurt, when we try to spare ourselves the effort and pain of pursuing truth, love, and goodness that we drift into a life of emptiness… It is not by sidestepping or fleeing from suffering that we are healed, but rather by our capacity for accepting it, maturing through it, and finding meaning through union with Christ, who suffered with infinite love.”

Pope Benedict XVI

We have gone on to have three more healthy children. Each pregnancy is wrought with worry until we reach the 20-week sonogram and get a diagnosis. All our children know of their sisters and how meaningful they are to our family. Our prayers end each night by asking them to watch over our family, and I’m certain they are.