Coming up Violet this October for Down Syndrome Awareness
There are 31 days in October. Last year, Down syndrome crossed my mind during none of them. That was me in 2019. Before Violet.
Recognizing October as Down Syndrome Awareness Month may be one of the least significant things my daughter has taught me in the five months since I held her for the first time in the maternity unit of Capital Health Hopewell in Pennington, N.J.
We knew before we arrived at the hospital on that Tuesday morning in May that our Violet had trisomy 21, an extra copy of the 21st chromosome. That additional piece of genetic material causes the characteristics associated with Down syndrome.
A prenatal screening had revealed the trisomy 21 way back in November. My wife Emily and I grappled with the news that Violet would likely be the one baby of 700 born in the United States with Down syndrome.
It was hard. As all would-be parents probably do when they learn they're expecting, Emily and I dreamed about what kind of life our child would have. We did the same thing before her older brother Luke was born in 2017. Receiving the diagnosis prompted a painful course correction.
The day we found out, we left work early. We did research, we prayed, we struggled. We built the ultimate "fake-it-until-you-make-it" narrative we'd employ when we told our families and friends the news: Don't say you're sorry. Don't feel bad for us. We're excited. Our baby is perfect. She is exactly what God intended and we're going to work hard to be parents who are worthy of her. Yes, she may have related health problems and cognitive delays but her possibilities are still limitless.
Some days we meant what we said 100%. Other days, we faked it.
Emily threw herself into the research. She found specialists, joined Facebook groups for support, bought books, watched videos, tracked down people she knew with children that have Down syndrome and set up Zoom calls with them. Emily also ran point on Violet's early intervention efforts.
No stone would be left unturned if there was a chance that beneath that stone was something that'd give our baby a better shot or help Emily be the mom her daughter needed.
We met our sweet Violet and fell head over heels for her. She was healthy. She also cleared a number of hurdles that'd worried us from the beginning. She has an atrial septal defect (a hole in the wall separating the two upper chambers of the heart) but it's small and the specialists say it needs only to be monitored at bi-annual checks. If it does get larger, Violet's a good candidate for a less-invasive surgery that can be done in a catheterization laboratory.
A friend told me "anytime the doctor sees it and says 'come back in six months' that's a win." I'm going with that.
As befitting her extra chromosome, Violet is extra everything — affectionate, happy and curious with a smile that can light up the darkest corners of our minds and hearts. She also exhibits a scrappy, stubborn side that comes out during her physical therapy sessions. But it's her sweetness we keep coming back to. It's as immeasurable as it is unconditional.
Violet is challenging us every day to follow her example by living joyfully, loving completely and trusting absolutely.
Even in our first five months as the parents of a child with special needs, we've been touched by so many people who've welcomed us into this community.
Specifically, we'll mention the fine work of everyone at Bucks County Early Intervention, Jack's Basket, a nonprofit that provides congratulatory gifts, support and resources to the families of children with Down syndrome, and Nothing Down, which works with the medical community to promote compassionate notification of Down syndrome diagnoses, plus up-to-date education and resources. And we highly recommend the Bucks County Down Syndrome Interest Group and the Down Syndrome Diagnosis Network for parents looking to get connected.
We'd also like to thank those in the Commonwealth for speaking out in support of Pennsylvanians with Down syndrome earlier this month.
They include Pennsylvania First Lady Frances Wolf, who spoke of the need to "honor the contributions of individuals living the Down syndrome to our communities..." and human services Secretary Teresa Miller, who encouraged Pennsylvanians to play an active role in celebrating and uplifting the stories and experiences of our family, friends and neighbors with Down Syndrome so they can live an everyday life with inclusion and opportunities that they are entitled to and deserve.”
Today, we celebrate Violet's story in the hopes that, by telling it, we can do something small to help secure an inclusive future world for Violet and all of her brothers and sisters with Down syndrome.
We can't wait to see what Violet does next, what she'll be like when she's older, how she'll stare down prejudices and push back on those who try to tell her what she can't do. It's going to be amazing.
John Anastasi is the editorial page coordinator for The Intelligencer and Bucks County Courier Times. He can be reached at janastasi@couriertimes.com.