Set your own expectations: Jerome Lejeune Medical Center pilot family on raising children with Trisomy 21

Earlier this month, we spoke with Sonia McGarrity, the mother of children involved in the pilot program at the new Jerome Lejeune medical center. We encourage you to read her story and learn more about what it’s like to raise four children with Trisomy 21.

Sonia, tell us a bit about your family.

After our first two sons, Thomas and Sean were born in 2003 and 2004, our third son, Jeffrey was born in 2006. Jeffrey’s prenatal ultrasounds looked just like our previous children’s, so about an hour after his birth, when our midwife told us she thought Jeffrey had Trisomy 21, we were surprised. That day, we began a journey that we could not have possibly anticipated.

Note: we use “Trisomy 21” to refer to the fact that our children have been born with a third copy of the 21^st chromosome because we’ve realized that “Down syndrome” brings with it certain spoken or tacit assumptions about what our children can and can’t do based on how they look.

In 2007, our fourth son was born. Following his birth, we had two miscarriages, so we decided to adopt Cecilia in 2010. However, to prove that God has a sense of humor and knows exactly what we need, I gave birth to our son Augustine in 2011, one year and four days after Cecilia’s birth! Since then, we have added two more little girls, RoseMarie and Charlotte to our family through adoption.

Thomas is now a freshman at Hillsdale college and Charlotte is in preschool, with everyone else in between.

What motivated you to adopt three children with Trisomy 21?

After our fourth son was born, we were open to the possibility of more children. After I had a miscarriage the following year, God put it on my heart to google “Down syndrome adoption.” That led me to the website of the National Down Syndrome Adoption Network and a conversation with Robin, the organization’s director, who has adopted several children with Trisomy 21, and now helps others throughout the country do so.

After talking to Robin, I thought, “Yes Lord, we could love a second sweet kiddo with Trisomy 21.” So, we did a home study and in 2010, we met and adopted Cecilia as a newborn. Since then, we adopted RoseMarie in 2015 and Charlotte in 2018, both of whom have Trisomy 21. We thought that since we had the experience of parenting a child with Trisomy 21, we could do it again. We have an amazing network of therapists and friends and our church community who have supported us through the years.

What has your experience been like as a pilot family at the new Jerome Lejeune medical center in Denver?

Having learned the story of Dr. Lejeune, who was a Catholic doctor and friend of Pope Saint John Paul II, and his love for people with Trisomy 21, we ask his intercession daily to guide us in the joys and sorrows of our family life raising eight children, four of whom have Trisomy 21. Hearing that a clinic in his name was being started here in Denver, meeting the individuals from the Jerome Lejeune Foundation, and learning about the Center in Paris that has carried on Dr. Lejeune’s legacy has given us a sense of the larger community of people who want to serve our children and others with Trisomy 21. The medical team at Bella, which has partnered with the Jerome Lejeune Foundation to run the Denver center, truly shares the spirit we have seen in documentaries about Dr. Lejeune in how they respect and value the dignity of those with Trisomy 21 and want them to reach their full potential. We are hopeful that the clinic will be a source of medical support and guidance for us and for our children in the years to come.

What do you wish everyone knew about people with Trisomy 21?

We recently had an epiphany regarding how our society views children with Trisomy 21. While great strides in integrating people with Trisomy 21 into society have been made in the past 60 years since Dr. Lejeune discovered its cause, we feel that there is still a bias in our culture, the medical community, and the educational system towards the parents, families and friends of people with Trisomy 21 regarding how the medical condition influences their capabilities.

If we’re honest, each one of us holds certain assumptions about what people with Trisomy 21 are and are not intellectually capable of. While the phrase “Trisomy 21” describes the medical condition of a third copy of the 21^st chromosome, the “Down syndrome” phrase describes certain physical characteristics, and has in large part come to convey assumptions about intellectual ability as well. In practical application, when someone sees a person who exhibits qualities that suggest Trisomy 21, they presume certain limitations regarding what that person can and cannot do.

Allow me to share an example of how these limiting assumptions work: In a recent meeting about our six-year old daughter RoseMarie’s cognitive abilities, a professional reported that based on her testing results, RoseMarie speaks an average of four words per sentence. However – here’s a sentence that this little Jane Austen rattled off last week:

“Daddy, I want you to put the music on low down so when it gets louder, it won’t wake mommy up.”

That’s 21 words!

When Rosemarie’s teachers hear that her “average sentence length” is 4 words (and even when we, her parents, hear that) it translates to an expectation that she can’t do certain things. Ridiculous! We can’t just assume that “four words” or whatever the “ceiling” the world has told us – is all that our children can reach. We need to make the sky the limit in OUR expectations and let THEM determine what they are capable of – whether playing a musical instrument, writing a book, excelling at a sport, or reaching certain educational levels.

In short, we’re realizing more every day that first and foremost, our children with Trisomy 21 are just that: children, and we need to treat them exactly like our other children. We also pray that all people of goodwill will come to see the beauty and dignity of children with Trisomy 21 even amidst the challenges that they (and any child) will experience in life, and bring an end to selective abortions based on a prenatal diagnosis of Trisomy 21.

If you’re interested in learning more about the McGarritys’ story, check out their iHeart Radio interview on the Dan Caplis show, which aired January 13, 2022.