Tyler's Story is shared by his mom, Nicole Tobias.
There are certain questions used as conversation starters—questions like, “Where are you from?” or “What kind of work do you do?” A common question is, “Do you have kids?” All seemingly harmless questions. However, for me, the answer to “Do I have kids?” becomes complex.
If I answer “yes,” the next question might be, “How old?” That is where the common becomes complicated. Answering the question requires me to evoke sadness. I recall being asked by a stranger if I had children, and I answered, “No.” To this day, that answer haunts me, yet I chose to avoid the taboo of bringing up the death of a child.
You see, the simple answer is: yes, I have a son. I acknowledge the taboo and say, “Yes, I have a son named Tyler, who passed on at the age of ten months. However, he is an example of God’s presence through many signs.” Tyler’s legacy is a testament to faith, love, and the presence of something greater.
From birth, Tyler followed a unique path. He was born on January 15, 2004, and was my first child after a miscarriage the year before. He seemed healthy at birth, with minor medical concerns.
When he was two months old, I took a picture of him at home in green and white striped pajamas. Seated with his hands between his long, skinny legs, I said, “He looks like a frog.” The frog symbol would come to represent Tyler.
During Tyler’s first three months, he had two trips to the hospital, and I had a sense that he had something more serious. I put my trust in God and persevered.
On April 19, 2004, due to complications that at the time had no explanation, Tyler began a five-month hospital stay that would take him to three hospitals in three cities: Buffalo, Boston, and Rochester. Each hospital stay is a story of its own. Eventually, I figured out, before the doctors, that Tyler had Leigh syndrome. The diagnosis was crushing. Most children with Leigh syndrome do not live past the age of three. However, I would not allow his legacy to become defined by his sickness or his eventual death.
As mentioned, Tyler spent part of his hospital stay in Boston Children’s Hospital in Massachusetts. It was the workup received in Boston that led to his diagnosis. During our time there, I spent my first Mother’s Day at Fenway Park during a Red Sox game. The Red Sox had not won the World Series in 86 years, and I told the doctors and nurses that they would win the World Series because of Tyler.
Rochester is close to Buffalo, so after Boston, we went there for the neurology team. It was there that I read an article about ethical wills. An ethical will establishes a legacy for someone who does not leave behind items of monetary value. By then, I was a more enthusiastic Red Sox fan. I wrote Tyler’s will in August 2004 and stated all the unique qualities he would leave to the world, including: “He leaves behind his cheers and good luck to boost the Red Sox into the World Series.”
When we returned to our hometown of Buffalo, Tyler had some good days, but Leigh syndrome has no cure. The difficulty of planning a funeral for your child is immense. My faith taught me that we are God’s children. By birth, I bore Tyler; by his baptism, he is a child of God. My earthly desires wanted to hold onto him, and at the same time, I was ready for God to call him home.
While making the arrangements prior to his passing, I made sure the funeral would be a celebration of life. I knew death would not be the end of Tyler’s story.
Tyler succumbed to Leigh syndrome on September 27, 2004, while in my arms. I had the “B” for the Red Sox engraved on his marker and buried him wearing denim overalls, surrounded by souvenirs from Red Sox games as well as a stuffed giraffe my sister gifted him.
2004 was not just any year for the Red Sox. They made it to the American League Championship Series against their rival, the New York Yankees. The Yankees took a 3-0 lead in the best-of-seven series. The Red Sox overcame the deficit and won the final four games, earning their spot in the World Series. They played the St. Louis Cardinals and swept the series, winning on October 27, 2004—one month to the day after Tyler’s passing. Tyler’s ethical will had foretold this improbable World Series win. The Red Sox broke their 86-year drought, known as the “Curse of the Babe.”
A week after Tyler passed, I went with my mom to a store called “Angels Among Us,” where I was drawn to a greeting card rack. One card had a painting of a boy who looked like Tyler, dressed in white overalls playing with frogs. As mentioned, frogs became Tyler’s symbol, and we had buried him in denim overalls. I explained to people through this painting that his overalls turned white in heaven, and he found his frog pond. The title of the painting is Thank Heaven for Little Boys, and I know Tyler inspired it.
The first Easter after Tyler’s passing, my mom and I visited a market where a vendor sold figurines of children dressed as animals. I found one of a boy dressed in frog snorkel gear with a green and white striped shirt underneath. It had a giraffe innertube like the toy my sister gave Tyler. These details alone were unbelievable; however, each figurine had a name underneath. When I turned over the frog, it said: “Tyler the Frog.” I knew these details were no coincidence—they were reminders that Tyler’s energy was alive.
Tyler’s dad and I divorced a month after Tyler passed. The challenges in our marriage were overshadowed by the loss of a child, and I wish him well. In 2016, I met a man named Frank. The first night we met, Frank listened to Tyler’s story for over two hours. Tyler led me to Frank.
To my surprise, on May 27, 2017, Frank asked me to marry him at a Red Sox game in Boston. We were standing on the deck of the stadium built the same month and year Tyler arrived at Boston Children’s Hospital. With Tyler’s energy surrounding us, I replied with an undeniable, “Yes.” The Red Sox won that game in a 6-0 shutout, and we met the game-winning pitcher.
The World Series did not happen in 2017, but it did in 2018. By then, Frank and I had moved to Hawaii. We joined my two brothers who also live there. We decided to attend Game Four in Los Angeles. We checked into our motel and saw a frog statue—a certain sign of Tyler’s presence. The Red Sox won Game Four and needed one more win to secure the World Series. We scrambled to get tickets to Game Five and were able to see the Red Sox win, with Tyler’s spirit there with us.
With all these miraculous moments, the bitter sting of child loss remains, which I cannot underestimate. Without my faith, I might still be stuck on the day Tyler died. However, I will always be Tyler’s mom. His legacy continues through the signs, the wins, the frogs, and the ways he “hops” into my life.
So when people ask, I will always be proud to answer, “Yes, I have a son named Tyler, who physically passed on. But if you care to listen, I would love to share the many ways his life and legacy inspire us to find God in our own lives.”
