Down syndrome became part of my everyday vocabulary back in 2006 after my daughter, Jaycee, was born. It was a doctor in a NICU who first explained that Down syndrome would result in an Intellectual Disability, developmental delays, and certain physical characteristics for our daughter. The doctor painted a picture that was bleak and discouraging when he told my husband and me what her life would be like as a person with Down syndrome. In the shocked and vulnerable state I was in, I believed his words and accepted the idea that Down syndrome was not something to be joyful about.
For the last thirteen years, my daughter has taught us more about Down syndrome than any book or doctor.
Our journey with her has been unique and full of surprises that no one could have predicted. Jaycee is her own person who happens to have Down syndrome. Our lives have not been the doom and gloom version that the doctor warned us about, and joy abounds in our home.
When I reflect back on those early days after the diagnosis, I believe there’s a lesson for many people to understand. When families like mine receive a diagnosis, there are ideas, stigmas, and emotions to overcome. Down syndrome is often viewed by the world in a negative light. It is a diagnosis that many parents fear. It’s a diagnosis that is often met with tears and mourning of a life that could have been very different. Real support and comfort is difficult to find. Nervous people who aren’t sure what to say may tell families who are newly diagnosed, “I’m sorry.” There are many things in our culture that convey messages that a baby with Down syndrome is less than, undesirable, and frightening.
As many families recognize and celebrate World Down Syndrome Day on March 21st, the church should join in on the celebration.
There’s an opportunity for the church to come alongside of families that have just received a Down syndrome diagnosis and provide support that is often missing. The church should not be another place that Down syndrome is perceived as something negative, but parents need to be encouraged that their child is a gift from God. They need to be reminded that they can have hope despite some uncertainties. Hope comes through Jesus regardless of a child’s chromosome count. The church body can offer their congratulations regarding the child’s birth, provide a listening ear, and offer real assistance by asking what the family needs from them, especially if there are any health issues with the baby.
All life is precious. All life is God breathed. All life is valuable in God’s eyes. All life is a reason for joy. There is nothing to fear about Down syndrome because perfect love casts it out. I have found the love I have for my daughter and vice-versa is, in fact, perfect. I wasted so many days early on being fear-stricken by the many unknowns of her future and crying over situations that seemed important at the time because the culture of this world had slanted my point-of-view.
From the beginning of my daughter’s diagnosis, I was given information only from a worldly perspective. I was never informed about what love could do for me and my child. Love is a powerful force that the church needs to remind all families about who are facing uncertainties.
Love compels people to think beyond themselves and serve without wanting anything in return. Love sees the beauty in people and doesn’t focus on the shortcomings. Love gives us assurances that nothing else can. Love is a gift from God.
On World Down Syndrome Day, I encourage the church body to remind those families with a newly diagnosed baby of the power of love to carry them through many worries. The church can also embrace those families who have a loved one with Down syndrome showing that all members are important in the body.
Evana is a wife and mother of two children. Since becoming a parent, Evana has spent many hours driving to specialty appointments, praying beside a hospital bed, and learning about her children’s diagnoses. Evana is also a pediatric speech-language pathologist and serves children with autism, feeding disorders, and other developmental delays. You can connect with Evana on Twitter, Facebook, and her blog, A Special Purposed Life. You can also read more about her family’s story in her book, Badges of Motherhood: One Mother’s Story about Family, Down syndrome, Hospitals, and Faith.