Love doesn’t count chromosomes. (p. 167)
I was truly captivated by reading Sheryl Crosier’s book, I Am Not a Syndrome…My Name is Simon. Knowing practically nothing about Trisomy 18, I realized through her story more than the often daunting medical diagnosis. I learned about a child who lived only 88 1/2 days on earth, yet a child whose brief life transformed so many people’s hearts and brought them closer to God.
As a woman who is staunchly pro-life in every aspect, it wasn’t so much the argument in favor of giving equal treatment to Simon that drew me into his little life’s story. It was much more than that. It was the fact that Simon came alive in my heart. I got to know him through the eyes of his mother, and I was also deeply humbled by Sheryl’s courageous faith that took her on a very uncertain and tumultuous journey from miscarriage to giving birth to little Simon and hearing about the diagnosis of Trisomy 18.
Kids with shaky diagnoses are often viewed as liabilities by the medical community, which must be changed. I remember when Sarah was born and how we knew virtually nothing about Apert syndrome or what it could do to the body and brain. To this day, we know very little about life expectancy and mortality rates for people with Apert. Reading Simon’s story brought back a whole host of these emotions from the early days following Sarah’s diagnosis, but in a way that was healing rather than heartbreaking.
Sheryl Crosier draws the reader into her own grief – uncensored, unapologetic. She is sharing from her heart the depth of her love for both God and her family. She shows us that miracles surround us everywhere, especially in the little things, those “Godincidences,” as she calls them. She keeps Simon’s memory alive by recognizing and embracing the supernatural “Simon signs” that remind her that Simon is still with them, just no longer in a tangible way.
Consider this incredible wisdom and beauty from Bishop Emeritus in residence at Crosier’s home parish, Most. Rev. Hermann:
These parents have received the light of wisdom to realize that they are experiencing the kingdom of heaven within them when they take care of this child. When we look at a special needs child, Jesus is asking us directly, ‘Do you see me?’ These children draw out in their parents strength and grace they didn’t even know they possessed. They are a gift from God – to families, communities, and the Body of Christ. Their ability to edify and inspire unconditional love can change our self-image from a culture of death to one that grants all God’s children the dignity they deserve. (p. 101)
As a disability advocate, I couldn’t have written or said this more superbly. Jesus asks us through people with disabilities, “Do you see me?” Disabilities aren’t flaws in a human person’s dignity. They are a reflection of the brokenness in Jesus, but it is a beautiful brokenness that is visible and forces us to confront our own weaknesses that we tend to hide. Through their visible differences, people with varying diagnoses shine more brightly with joy and love, so much so that we are often humbled to the painful core when we encounter them. Simon and our sweet Sarah are among those little souls who change lives simply by being who they are.
Crosier’s book is an incredible pro-life resource, but it is also a book I would pass on to parents who receive the serious prenatal diagnosis of Trisomy 18. Interestingly, I have met two women who shared with me that they received this diagnosis recently. I’m proud to hand them Crosier’s book, which I am certain will be a comfort and companion to them in their journey towards courageously choosing life.
Text (c) Jeannie Ewing, all rights reserved.