Never in my wildest dreams…
Never in my wildest dreams would I have imagined that my husband and I would have three healthy and beautiful children; that our middle child would be born with Down syndrome; and that I would fall in love with and eventually work for a non-profit organization that celebrates babies with Down syndrome. That narrative would have scared me, but has turned out to be perfect. This reality of mine began in November 2018 when our prenatal testing results came back with a high-risk for Down syndrome.Our diagnosis experience was long, lonely, and biased. I was 10 weeks pregnant with Grace – when we did the non invasive prenatal screening (NIPS). We had no idea the ride on which we were about to embark.
A few days had passed since my blood draw for the test when I got a call from the number I knew was the hospital. My heart immediately sank – why was the genetic counselor calling me? It must be “bad” news. I picked up the phone call and the voice on the other end was somber, shaking and awkward – the most polite way to describe it.
The genetic counselor shared with me that my blood results came back and that she was very sorry. The screening showed that our baby had a 91% chance of being born with Down syndrome.
I momentarily blacked out.
I grabbed my unborn child through my belly, the room spun and time stopped. All I heard next was the following: abortion is an option…adoption is an option…1 in 2 babies born with Down syndrome have a heart defect…and if I wanted support, I could reach out to her.
I hung up the phone.
There I was on my bedroom floor, extremely confused, and alone, and scared, and ashamed. What did it even mean to have a baby with Down syndrome? No information was given to me…or us? My husband was across the country traveling for work, I had never felt so alone. I called my parents. I tracked down my husband, Joey and jumbled the news for him. He called his parents. Within thirty minutes our families were sitting on our couch, hugging me and validating this child’s worth, encouraging me and sharing every confidence that we will welcome this child with everything we have and more. I did not doubt our families’ words for a second.
Joey caught an early flight home first thing the next morning. When he got home we didn’t exchange words, we just hugged and cried – not because we didn’t want this child, but because our child was already de-valued through the diagnosis process before anyone even had a chance to know her. We were given no information or resources besides the biased view that a life with Down syndrome is less than any other.
Following the high risk results through a 6 week journey we completed:
- the CVS screen of chromosomes in the placenta and confirmed our baby would be born with Down syndrome
- two echocardiograms that confirmed she would be born with a flawless heart
On May 20, 2019 we welcomed our sweet baby girl Grace Francis Nevin. We received a Jack’s Basket upon her birth, it was a moment we felt special and valued. I hated our diagnosis story. You shouldn’t have to prove your child’s worth, and yet, after the way the news was delivered to me that November afternoon, I felt like I had to. We knew through this process we were called to do more. God was asking for more of us.
Grace has been met with tremendous love, support, and acceptance. Likewise, our journey has been rewarding and our determination and dedication to her, unwavering – entirely different from what the genetic counselor portrayed in that first phone call. We have been blessed with doctors, therapists, and teachers who love and care for Grace without reservation. Grace lights up every room and brings the most pure and beautiful joy to each thing we do. To see the world through her eyes is incredibly humbling.
So why am I telling this story? In the days and weeks following Grace’s diagnosis, despite the support from our family and friends, I still felt alone. With nowhere else to turn I resorted to the internet and social media and searched things like “family with down syndrome”, “newborn with down syndrome”. It was while navigating those searches that I found Carissa Carroll and Jack’s Basket.
I read the website, blog posts, and mission of Jack’s Basket… and from that moment, I knew I needed to be involved. Because of Jack’s Basket, I went from feeling ashamed of my child to inspired and empowered to change the narrative of Down syndrome – and in this organization, I saw an avenue to accomplish it. In Fall 2019, I followed a post from Jack’s Basket asking for volunteers. I met Carissa virtually, made their mission my own, and officially joined the ranks as a volunteer. I committed myself to work to ensure that no one would ever have the diagnosis story that we did. Every baby born with Down syndrome should be celebrated like any other.
Fast forward three years as a volunteer. Carissa and my paths officially crossed in-person at the DSDN conference in Fall 2022. We took a selfie together very close to where Joey was when I called him three years prior with our diagnosis news.
So, I suppose that my wildest dreams did come true.
My name is Lisa Nevin, I am the Director of Programs & Development at Jack’s Basket. My husband Joey and I have three children Maeve (5.5) Grace (3.5) and Declan (1.5), we live in the San Francisco Bay Area and we celebrate Grace’s life every day.
To Jack’s Basket – You Make Me Better.
And to my Grace – You (will forever) Make Me Better.