Benjamin’s Story
Consider:
Each family has its own unique story. These are Benjamin’s chapters of our story.
Chapter 1
Benjamin’s story begins in early 2003. At that time, we were a family of five living a very active life. Grace was 5½, Claire had just turned 4, and Sarah was 1½. We were in a good routine. Grace was in PreK at our parish school, where I used to teach, Claire was in the 4-year-old class in preschool, and Sarah was still at home with me, just dying to start school like her big sisters. Much of our life was bathed in pink and purple, and we watched lots of fairy princess movies. The girls’ all-time favorite movie and princess at the time was Thumbelina. We watched it on repeat! Life was good!
Then life got even better when we found out that we were expecting our fourth child, due in early October. When we told the girls the good news, they were delighted as they collectively informed us that they had been praying for us to have another baby. Funny thing is that Chris and I were open to more children, but we hadn’t been actively praying for it. We were all so excited! This family was growing at a rapid rate, and we were riding a wave of joy and expectation. The girls were old enough to share in the excitement: feeling the baby kick, going to the first ultrasound (we didn’t find out the gender), and thinking up names. It was no surprise to us that the girls suggested Thumbelina for a girl and Prince Cornelius, the prince in Thumbelina, for a boy.
The weeks and months passed quickly until I went to an appointment with my obstetrician at around 30 weeks of pregnancy. My weight concerned the doctor. I wasn't gaining weight in the same way I had with the girls. I wasn’t doing anything differently this pregnancy than in my three prior pregnancies, so we were scheduled for an amniocentesis to determine what might be causing this pregnancy to be different. The results showed that our child had Wolf-Hirschhorn syndrome, a genetic chromosomal deletion disorder, which causes children to have low birth weights. We also received the information that our child had a cleft lip and palate. None of these things were present or observable at our original ultrasound, many weeks before. It was also during this time that we found out that we were expecting a boy. We have never wanted to know the genders of our children before birth–keeping it a surprise–but there were too many unknowns this time, and we wanted all the information we could get to ready ourselves. We knew we had to become informed about Wolf-Hirschhorn syndrome and to be ready for the fact that children with this syndrome can have a reduced and variable life expectancy.
Chris and I gathered our thoughts and composure and discussed ways to tell our family and friends. First, we had to tell the girls, now ages 6, 4, and 2, what was happening in a way they could understand and without frightening them. We sat down to dinner that night, and Chris began the conversation calmly. He explained that we had been to the doctor and found out that the baby might have some health problems.
He started by telling them that the baby was going to be small and a boy. The girls were delighted that they were having a brother, and the fact that he was going to be small meant that Cornelius, the tiny prince in Thumbelina, was the perfect name for their brother. With our hearts lifted a little by their pure acceptance and enthusiasm, Chris went on to explain that the baby might not be very strong and could go to heaven before he was even born. At this point, Sarah, age 2, pointed at a picture of my parents and said, “Like Grandma Sandy went to heaven?” I still don’t know whether that was a question or a statement of fact, but either way, she left us speechless with her observation. In a day filled with many unknowns, we knew one thing for sure: this child was already part of our lives, and we would continue to love him, no matter what.
I cannot begin to describe the incredible amount of love and support we received from our family, friends, neighbors, coworkers, and doctors. We knew that the girls were feeling all this love and support as well. One of the most special moments I had with my father occurred at this time. We all came to understand that developmental delays and severe health issues were a likelihood, and this caused a more profound concern for my father. He grew up with a cousin who, in my father’s day, was called “retarded”. Back then, children with disabilities and medical issues often lived full-time or part-time in homes or institutions. I believe this is what led my father to ask me if the baby would live in an institution after he was born. I was shocked at first, but then I realized that my father was asking out of concern and due to his own lack of understanding. I composed myself and explained that the baby would live in our home, and that we would handle any needs that the baby may have with the assistance of medical professionals. He was relieved and thankful.
Doctors decided to set the delivery date for September 30th, one week before the due date. They wanted to arrange for the delivery to include specialists who would need to be present once the baby was born. We decided it was time to settle on a name, and no, we did not name him Cornelius. We chose Benjamin Thomas Casper. We liked the name Benjamin, and Thomas is Chris’s father’s name.
In the days leading up to Benjamin’s delivery, I prayed for the strength to bear whatever happened, and I said prayers of thanksgiving for having this child in our lives. I held tight to the many moments of joy we had experienced as a family since we found out we were expecting Benjamin, allowing those moments to occupy my heart and mind. I found myself thinking of Mary, the mother of Jesus. Thinking of how excruciating it was for her to watch her son die on the cross. I prayed for her to be with me, to guide me, to comfort me. I walked into the delivery room knowing that Chris and I were not alone.
Chapter 2
We were pleasantly surprised to find that the nurse assigned to us was a friend from high school. Oh, that made it better. I felt more at ease. This person knew us; we could relax a little, we were in good hands. She asked if we would like one of the Eucharistic ministers to come and give us Communion. We said, “Yes.” Soon, a lovely woman entered our room and introduced herself: “Good morning, my name is Mary.” I took this as an answered prayer.
Benjamin’s delivery was not without complication. Even though he was small, he had become stuck in the birth canal, and forceps had to be used to deliver him. His face was bruised, but there were no immediate concerns. We had been warned that, depending on how his delivery went, we may not even get to hold him before he was taken to the Neonatal Intensive Care Unit (NICU). Instead, he was breathing well on his own. That part of the delivery went much like the deliveries we had with the girls, with Chris hovering over Benjamin in the incubator as his vitals were assessed and he received his first bath. One difference is that Chris baptized Benjamin with holy water given to us by our priest. I can’t tell you how incredible it is to witness your husband perform this sacrament for your child.
Benjamin would go on to spend one week in the NICU. I know that sounds like an eternity to some people, but it really did pass very quickly. There was seldom a moment when a family member was not with Benjamin. While in the NICU, we met the doctor who would be performing Benjamin’s cleft lip and palate surgeries. He and his team taught us how to use the special bottle used for babies with a cleft lip and palate. By the end of that week, the nurses said our very sweet and strong young boy was outshining the rest of the babies, and it was time to take him home. (If you are or have been a parent of a child who was not expected to live, or fail to thrive, a statement like this is like winning the lottery!)
The next six weeks were an amazing time with all four of our children under one roof. We were back to our busy routine: carpool, errands, fall festivities at the girls’ schools–the usual stuff. There were also appointments with Benjamin’s heart specialist, vision specialist, craniofacial specialist, and occupational therapist, with each telling us that he was progressing better than expected. Life was good!
Chapter 3
On November 17th, Benjamin had a cold that would later be diagnosed as Respiratory Syncytial Virus (RSV). At first, he had mild symptoms, but by 6:15 am on November 18th, we were rushing to the ER. He was having difficulty breathing. I held him in my arms, rubbing his chest to stimulate breathing as Chris drove at breakneck speed. He pulled up to the ER, and I hopped out with Benjamin in my arms. The attendant could see that Benjamin was in distress and took us back to a room immediately. Benjamin started having seizures, which led to his being intubated. Benjamin was admitted to the Pediatric Intensive Care Unit (PICU) and remained there for the next eighteen days. He was a champ! Even intubated and hooked up to tubes and monitors, he was expressive with his sweet eyes and little kicks and wiggles when we spoke to him or touched him.
I stayed with Benjamin while the girls were in school and returned each night after the girls went to bed. I spent every night in the PICU, and relatives stayed with him during the hours Chris or I could not be there. We kept a binder that we started the day we found out he had Wolf-Hirshhorn syndrome in his room. It contained every piece of medical information we had, and whoever was present when doctors and nurses came with updates added that information to a log we had created to track all that was happening. The log included more than test results and vitals. It was also like a diary where we kept notes about who came to visit and to record moments when Benjamin interacted with us. An intubated baby can still express delight at seeing your face, hearing your voice, and feeling your touch. You see it in the way they look at you and snuggle in when they are held.
The days that passed were filled with ups and downs–improvements and setbacks. Then, finally, on day 16, December 3rd, Benjamin was free of pneumonia and fully weaned off the ventilator and extubated. By the next day, he was improved enough to have the nasal cannula removed. On December 5th, my sister Julie and our daughter Sarah were visiting Benjamin and me in the PICU when the doctor came to tell us that Benjamin was well enough to be discharged. I immediately called Chris, speaking at a pace and volume that surely made it difficult to understand me. I couldn’t pack up Benjamin’s things fast enough.
Oddly, as quickly as this was all happening, I felt somehow in slow motion, almost as if it wasn’t really happening, as if I was outside the actual moment watching it happen. I have thought about this for the past twenty-two years. I vividly recall us moving down the hospital corridor toward the elevator and feeling uneasy. I almost felt like we shouldn’t be leaving, like I should stop, but stop to do what? Something kept propelling me forward. Maybe it was adrenaline, but I felt like I was being ushered out the door of the hospital by some gentle but insistent force and soon found myself placing Benjamin in his car seat. Even then, I felt something was out of place, like I was on autopilot, not really thinking, just doing. Still feeling strange, I started driving while my sister began calling family to share the fantastic news that Benjamin was coming home. Sarah was cheerful, sitting in the backseat next to her baby brother. I was still caught in this in-between space where I felt like I wasn’t in control of what I was doing, as if something was moving me–like I was numb and not fully present. Finally, we pulled into the driveway. I started to gather things from the car to take into the house. My sister must have gotten Sarah out of her car seat, and I began to move toward getting Benjamin from his.
I knew something was wrong the way a parent just knows something is wrong. Benjamin was not breathing. Then my mind came alive, and the fullness of my senses came back to me. Moments later, I had Benjamin in the house and started CPR while my sister called 911. The paramedics arrived quickly, assessed Benjamin, and told us they were taking him to the nearest hospital. I thank God these good people are trained so well. One of them firmly grasped my arms and asked if there was anyone else in the house. At that moment, I caught a glimpse of Sarah on the stairs. Oh, thank you, dear God, that we did not leave a two-year-old at home in the midst of all this chaos. A neighbor saw what was happening and came to take Sarah, and my sister and I jumped in my car to follow the ambulance. I called Chris on the drive, and he met us at the hospital. Attempts to revive Benjamin were unsuccessful, and we lost our sweet boy in the middle of the afternoon on December 5, 2003.
Chapter 4
We returned home to a house full of family and soon many friends. We excused ourselves from everyone to privately share with the girls that Benjamin had gone to heaven. We were all heartbroken, but Benjamin did not leave a hole in our hearts. He filled us with joy and made us stronger, more grateful people. The experience of expecting him, having him, and then losing him is part of our family story. We experienced the love and support of those around us, and the grace of God was bestowed upon us as we found strength in one another. Benjamin made a lasting impact on the hearts and minds of many. We (Chris, me, the girls, our relatives, our friends, our acquaintances) all experienced this love and loss.
Over the next couple of days, we experienced the continued love and support of our community. The girls’ teachers came to the house to check in and bring them cards their classmates had made for them. Friends from near and far called, stopped by, and brought meals. On the evening of December 9th, we received visitors at the funeral home, where the video below played near Benjamin’s tiny casket. It captures a fraction of how much we love our son and each other, and it has become one of the most special ways for us to celebrate and remember Benjamin.
On the morning of December 10th, we had a funeral mass at our church. There were so many tears of sorrow mixed with joy for having been chosen as Benjamin’s family. I stood by my husband on the altar of this church seven years earlier at our wedding, and on this day, I stood by his side as he gave our son’s eulogy. In this moment, I felt a love and closeness for my husband that defies description.
Benjamin’s Eulogy
Although Benjamin was only with us for a little more than 9 weeks, Andrea and I consider ourselves to have been blessed in many ways by his presence in our lives. As we learned more and more as Benjamin's birth approached, we gradually began to understand, and the doctors eventually were able to tell us, that Benjamin, from the time he was conceived, was missing a part of one of his chromosomes and would be facing all sorts of potential health problems. One in 50,000 babies is born with this birth defect, Wolf-Hirschhorn syndrome.
Thoughts begin to cross your mind: "Why me?, Why us?, Why our family?" But if not us and our family, then who would we have rather had been Benjamin's parents? Of course, the answer is no one. It is inconceivable that Benjamin could have been born to anyone else. He is our son, his sisters' brother, and it could not be any other way, nor would we have wanted it any other way. In that way, because we were Benjamin's family, we were blessed. We were also blessed to have shared every moment of Benjamin's life. He was nourished by the love of his three sisters, Grace, Claire, and Sarah. They don't know what a chromosome is, but their pure, sincere love for him is as ever a fine example of divine love as any of us will ever see in this life.
Benjamin's courage and toughness taught us lessons we will never forget. He was strong, determined, and exceptional. He was constantly amazing us, our friends, doctors, and nurses with his strength. To have witnessed that is an inspiration. We all have a tendency, at times, to think that life is unfair or hard. Benjamin, through his example, put all of that into perspective. What I am saying is that Benjamin's too-brief time with us here was enriching, rewarding, and in so many ways beautiful. In that way, we were blessed.
But the most profound way in which Benjamin enriched not just our lives but the lives of so many of you was the way in which his presence almost unleashed, or maybe simply exposed or shone the light on the tremendous love and compassion we share with our family, friends, neighbors, and Christ the King parish and school. From the time God sent Benjamin to join us, we have been overwhelmed by the amazing compassion of so many of you. We have, through the compassion and generosity of our friends and family, lived and experienced, thanks to you all, living examples of the love and lessons that Jesus and Mary teach us. So many people sacrificing their time and money and effort to help us, so many of you placing our needs ahead of yours! We experienced nothing short of the power of God's love right here in our lives.
Benjamin was the inspiration of an outpouring of love and affection that we were unprepared for and don't really expect to ever see again in this lifetime. For that, we were blessed. These are just some of the ways in which Benjamin blessed me and Andrea and Grace and Claire and Sarah. There are a lot of other ways, I'm sure you can think of, in which Benjamin blessed you and us.
Benjamin's life was not sad, or unfair, or a bad break, or a tragedy. It was a blessing, a gift, in so many ways. Thank you all for your love and support. Don't cry tears of sorrow for the angel Benjamin. The time he spent here among us will always be for us a source of inspiration and a living example of the very essence of love. Be thankful that we were all able to be a part of Benjamin's life. Be grateful for the love and joy that he brought, which we have all experienced. Be joyful that our lives were touched by his short time with us.
Thank you all, and God bless you.
Chapter 5
I would like to revisit a piece of information I shared in Chapter 1. I shared that my father was concerned about whether Benjamin would live with us or in an institution. He was likely basing that concern on experiences he had in his own young life many years before with his intellectually delayed cousin, Ollie. Often, when people are insecure or uncomfortable with something, they sadly mock the thing that makes them feel that way. Having Benjamin, a grandson with a cleft lip and palate and a syndrome that included cognitive delays, hit my father in a powerful way. My father used to tell jokes about “retarded” people and would speak with a lisp, like someone who had a cleft lip and palate might have many years ago. Benjamin eradicated this practice in my father. For our whole lives, my siblings, Kendra, Julie, Stephen, and I would shrink each time he told his jokes and acted so insensitively. Our discomfort and requests that he stop did nothing, but Benjamin changed my father’s heart and mind. My father was one of Benjamin’s most consistent visitors while he was in the PICU. He showed up one day with a mobile to put over Benjamin’s hospital crib. My father wanted his grandson to have something cheerful to look at amidst the monitors, tubes, and beeping machines. He did not see a child with a cleft lip and palate or health issues. Instead, he only saw a person he loved unconditionally, and began to live life as a more compassionate and understanding man. On December 5, 2011, exactly eight years after losing Benjamin, my father passed away unexpectedly and peacefully in his sleep, joining Benjamin in heaven and forever tying them together as a grandson and grandfather who did and continue to share a special bond.
Considerate gestures of love and kindness…
Never underestimate the power of kind gestures, both grand and small, to ease the feelings of grief and sorrow. We often send cards and flowers, prepare and deliver meals, and perform an array of kind and thoughtful deeds to help support those who are grieving. It is important to give those who are grieving space, but not so much space that they feel unsupported or alone. Don’t hesitate to make the call, send the text, or invite grieving people to resume their lives outside their homes and their grief.
Thank you to my sisters, Kendra and Julie, my sister-in-law, Kim, and cousin, Allison, for outfitting my girls and all the cousins for Benjamin’s visitation at the funeral home. Their generous consideration made this day doable and created a lasting moment in this photo. From sorrow we can find joy.
This is the Precious Life Tree at our church. Our neighbors dedicated a leaf on this tree to Benjamin shortly after he passed away. We visit it when we are at church, and we take family photos in front of it on holidays. This is Christmas 2024: Stephen (born after Benjamin’s passing), Sarah, Grace, and Claire.