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.
Silence.
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.
2 Comments
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Crissy Straub
My diagnosis was much like yours. I was given the wrong prenatal screening results at first. It was until my specialist saw 2 soft markers that I questioned the results I was given. After that appointment I called my doctors office that had the test results to ask some questions. The lady says "I’m so sorry"once she opened my chart and says I can have the doctor call you." I said "no you are going to tell me." She says "I don’t want too tell you. But a doctor should have called you." I said I need you to tell me now, I’m not waiting on a doctor." She said I’m sorry to tell you that it is 98% high risk for Trisomy 21. I said "what is that?" (I had not heard it called that before) she went on to explain. It turns out that her son has trisomy 21. We talked for a little bit. She set me up and appointment for the very next Monday. I call the specialist back and he says" I wish I would have known this while you were still in my office." He proceeds to ask if I want to keep him. He also told me all the bad things that he could be born with and what he wouldn’t be able to do. My heart dropped. I then had to tell my husband. My husband does not grieve well and I knew it was going to be bad and tough. I felt so much love for my baby already. For me, I grieved the fact that he was going to be limited by those who were ignorant. He was going to be treated different than my other children, though his life is worth just as much. And I grieved the baby I thought I was going to have. My husband shrunk into himself, he didn’t want to talk or acknowledge it. I heard him crying behind closed doors. He didn’t talked to me about it until after the Max was born. It was so lonely. I grieved by myself and processed by myself because my husband couldn’t deal with it. After about a week, I decided that I was going to love him either way and that I needed to stop being sad for him. That I needed to do everything I could to take care of myself. My mother inlaw kept calling me crying. I was having to console her by this point. I tried explaining to my other children that their brother may be a little different. My best friend was a huge support. Even though I had her, I still felt like I was dealing with it on my own. I was going to appointment nonstop taking all this information I was given the good and the bad and bottling it up.
Looking back I wish I could have enjoyed my pregnancy. He has not had any heart issues. His eyes and ears are good. He is getting a sleep study scheduled for breathing issues while sleeping. For the most part he’s like my other babies. He’s sweet and easy. Everyone loves him, he’s the best baby. He’s smart, funny, and looks at me like I’m the only person in the whole world. My husband came around. A lot of his fears diminished once he had all of his specialist appointments, and everything checked out good. His siblings love him and won’t say out of his face. I related so much to your story. I am tired of the doctors telling me what he won’t be able to do. They don’t know what his potential will be as he grows. I agree that we need to change how professionals deliver the diagnosis and how they deliver information about this syndrome. Thankyou for sharing your story. There are so many with a similar story. Thankyou for making a difference.Crissy
Rose
What a beautiful powerful message coming from an amazing woman and mom. Never in a million years would I have considered the doctor’s suggestions. It’s incredible that “value” is placed on a unborn child. I love how you both handled this news. You and your families are filled with so much love and determination. Some may call it bravery. Loving a child with any so-called-differences is so much more than bravery. It is fueled by love, compassion and respect for human life. It is much more than a word. Children are NOT limited. Others have the inability to see beyond the challenge, and cannot imagine the possibilities. You are the wind beneath their wings, stretching them as far as possible to help these children blossom to their best potential. Our fears and limitations are not theirs to carry. Lisa and Joey, we admire you and feel so inspired. Much love to you and your family. ❤️❤️❤️❤️❤️ Hugs.