Family shows love cannot be counted by chromosomes

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The Crosier family, from left, includes Sean, Scott, Sheryl, baby Simon and Samuel. They are shows in Simon's hospital room in 2010.

The Crosier family understands that love cannot be counted by chromosomes alone.

Last September, Scott and Sheryl Crosier welcomed into their family a son, Simon Dominic Crosier, who was born with trisomy 18, a genetic disorder that includes an extra chromosome 18. Less than 10 percent of all babies born with trisomy 18 live until their first birthdays, according to the trisomy 18 Foundation.

Simon, who was born into the loving arms of his family, including big brothers Samuel, now 8, and Sean, now 7, lived for about three months. During that time, the family, members of Annunciation Parish in Webster Groves, embarked on a journey that taught them much about love, life and their faith.

Before Simon was born, Sheryl and Scott Crosier decided that they would not have an amniocentesis (a procedure used in prenatal dianogsis of chromosomal abnormalities) despite a few potential markers that were found in an ultrasound.

"We are pro-life and respect for life is respect for God, as He is creator of all life," said Sheryl Crosier. "We knew the risk of having an amniocentesis could cause a miscarriage, and we knew we would never terminate the pregnancy, no matter what."

Three days after he was born, the family received the official news that Simon had full trisomy 18.

Sheryl Crosier admitted that at first, it was difficult to pray after they learned about Simon's diagnosis. She said she was grateful for the many people across the country who were praying for the family at that time.

It was a month after his birth that Sheryl Crosier said she "turned a corner and began thanking God for Simon."

In her prayer, she told God, "we want Simon, special needs and all. After all, this is a diagnosis, not a prognosis. Love does not count chromosomes."

During their time with Simon, the Crosiers stayed connected through faith, including regular Scripture readings, staying close to family and friends by way of a CaringBridge website dedicated to Simon (caringbridge.org/visit/simoncrosier) and receiving support from the parish family at Annunciation, including the ACTS community, Father Mark Dolan, who baptized Simon, and Father Bob Evans.

Since Simon's death, the family has remained involved in efforts that not only honor his memory, but also provide support to other families of babies with trisomy 18. Sheryl Crosier now serves as a chapter chair for the Support Organization for Trisomy 18, 13 and Related Disorders (SOFT) and Simon's grandparents organized a memorial golf tournament this summer for trisomy awareness and research. Sheryl Crosier also is in the process of writing a book about her son's life and the impact he had on the family.

Sheryl Crosier offered this advice for those who might know someone with an infant born with trisomy 18 or other critical diagnosis.

"Each grieving parent is unique and different. Honor the family's wishes ... listen if they need to vent. They can have the strongest faith in the world, but they hurt, too. We are flesh and God has created us to have emotions."

"Simon taught us so much," said Sheryl Crosier. "He taught us to live in the moment. He also taught us compassion, patience and to just trust Jesus. Simon was so pure and innocent, and he taught our family so much about unconditional love."

Resources

Support Organization for trisomy 18, 13 and Related Disorders: trisomy.org

Tracking Race Incidence Syndromes, a project to increase awareness of trisomy conditions, at Southern Illinois University-Carbondale: web.coehs.siu.edu/Grants/TRIS

The trisomy 18 Foundation: trisomy18.org

CaringBridge, a non-profit organization that provides free, private websites for individuals to connect with others during a health challenge: caringbridge.org