“The night before my life was forever changed, I attended a high school production of Hello Dolly. During one of the big company numbers, I noticed a girl with Down syndrome onstage. She was loving every second and I was so impressed with her personality, commitment and fiery smile. As I drove home with my friend after the show, I recall commenting on the young girl’s wonderful performance and took some time to praise the director for his inclusion. My parting thoughts as I exited her car were, ‘I can’t wait until my kids are grown up and I can get back onstage again.’ She chuckled because, at the time, I was only a few months pregnant with my second child.
The next day was like any other Friday. I was more than a little tired since the first trimester was zapping my energy but I woke up early and got ready for my weekly Bible study. It was my turn to lead worship, so I picked out a new, forest green top to wear with some loose fitting black pants and open-toed black shoes. My hair was wavy. I had rust-colored lipstick on and I wore contacts instead of glasses that day. I bundled up in a camel-colored coat and I used my grey handbag. Every single detail of that morning is permanently etched in my brain.
I cried almost the whole time I was there because, after I sang, a woman had approached me and offered to help take care of my older son. Having no family in the area, she wondered if I could use an extra hand, on occasion. This was two weeks before the whole world shut down due to COVID and I jumped at her offer. Tears flowed non-stop, from the moment she offered until the second I laid my head down to rest at home, a few hours later. I didn’t know why I was so emotional at the time but I figured it was due to pregnancy hormones. In hindsight I know that I had an odd sort of premonition of what was to come.
For some reason, my husband Braden was working from home that day and my son was down for his usual nap when I came home. It was quiet and peaceful and I told Braden I was going to take a nap. I walked upstairs, slipped under the cozy covers and turned the ringer off on my phone. My eyes were closed for…a minute? Five minutes? I can’t remember. But, in a flash, I shot up and looked at my phone just in time to see that someone was calling me. I answered immediately.
Caller: ‘Hi, Is this Misty?’
Me: ‘Yes, it is!’
Caller: ‘Hi, this is your OB calling. I have the results of your genetic testing.’
Me: ‘Oh yay!’ (I had been waiting weeks to find out the gender, the only reason I had opted for genetic testing).
Caller: ‘The results of X and Y test came back normal but you came up as high risk for… (awkwardly long pause)…
………….Trisomy 21…………………for Down syndrome.’
Me: ‘Oh my gosh! What do you mean? How high risk???’
Caller: ‘There is a 9/10 chance that the fetus has Down syndrome.’
Me: ‘Oh my gosh!’
Caller: ‘Yes…I’m sorry.’
(She continued to list off numbers to call and steps to take for this and that).
Me: ‘Wait, before you go! What is the baby? A boy or girl.’
Caller: ‘The fetus is a boy.’
I vaguely remember opening the door to leave my bedroom. I walked down the stairs with legs that felt like mush and collapsed at the bottom, dropping my phone as I fell. My husband, Braden, came rushing to me as I buried my face in the carpeted stairs.
Braden: ‘What is it? What happened?!’
Me (wailing): ‘They…think…they SAID….our baby BOY probably has Down syndrome! I can’t! I’m scared! WHYYYYY? I can’t do this, Braden! I can’t!’
He held me in silence as I cried.
Me: ‘I can’t DO THIS!’
Braden: ‘We will do this. This is our baby and we will love him no matter what.’
As soon as he said it, I knew he was right. I couldn’t think straight on my own because my head was pounding and parts of my body felt numb. Not my heart, though. My heart just ached. It was the deepest, most raw and terrified ache I had ever felt. HOW COULD THIS POSSIBLY BE?! Sure, I was higher risk due to my older age but this just doesn’t happen to people I knew…how could it happen to me?! What about my career as a performer? What about my two-year-old son? How would this impact him? What about my passions and aspirations…what about…my life?
I spent the weekend in bed, crying endlessly. I called and texted some family and friends and begged for prayer. I didn’t really know WHAT I was asking for prayer for but I knew I needed it. A few women showed up at my door…to hug me…to watch my son so my husband and I could go out to eat…to remind me to take care of myself. SO many hands lifted me through that weekend. On Sunday evening, I prayed the most desperate prayer of my life and asked God to be with us as we visited the genetic counselor the next morning. I KNEW I did not have the strength on my own to hear what she might or might NOT say.
My husband and I pulled up the next morning to the hospital and, as we exited the car, I saw parents holding the hands of their little girl. She turned around and smiled at us and I saw that SHE had Down syndrome. Tears flooded my eyes as I realized that God had already shown up to this upcoming meeting. My husband and I would not have to face this alone.
We sat with the genetic counselor for about 30 to 40 minutes and I was TERRIFIED the whole time of what she would say. Much to my surprise, I left that meeting with the first feeling of relief I’d had since receiving the news. She shared resources like the DSDN (Down Syndrome Diagnosis Network). She told us that siblings of people with Down syndrome often report being much better people because of how they grew up. She smiled. She listened. She HUMANIZED the whole experience. At one point, I looked up in the corner of the room and felt a presence…the presence of God. Once again, He showed up right when I needed him.
From that meeting onward, I was off to the races. I cried a lot…still. I mourned many things…still. I wrote on social media and in my blog about the pain I was processing through. I wrote about my own character flaws and defects that were put on display through this experience. My pregnancy continued to be very stressful with dozens upon dozens of appointments in the midst of a pandemic. I had to go to all of it alone…scared…dousing sanitizer all over myself. But, after that meeting with the genetic counselor, I had a course of action and a direction in which to head. It was now my full time job to educate myself, find community, learn the lingo and immerse myself in my new reality. We chose not to confirm the 9/10 chance with an amino but I knew, deep down, that our baby boy had Down syndrome.
What helped me the most was to name him. I sat one evening on my bed, reading the Bible. I came across 2 Samuel 12:24-25 which talks about David’s son and how God renamed him JEDIDIAH which means, ‘Beloved of God.’ That was it. Our son would be Jedidiah and he would, indeed, be loved by God. He already was.
On August 1, 2020, Jedidiah Coy Snyder was born at just 5 pounds, 2 ounces. He had not grown for the entire last month of my pregnancy and I was losing amniotic fluid. After a c-section, a hurricane, a week long stay in the NICU and many, many tears of heartache (over having to leave our precious boy at the hospital) and JOY (over this miracle we’d been given), we finally brought Jed home to meet his big brother, Clay. It was love at first sight for them. For all of us, really.
The first night of Jed’s life, I looked down at his eyes which were WIDE open for the first time. He gazed straight into my soul. I felt an instant connection, a spark. This boy was everything and MORE I could have ever wanted. His life had value and worth and beauty beyond what I could ever attempt to describe then…or NOW. And I knew, from that moment on, I would spend the rest of my life shouting his worth.
A few months after he was born, I came up with the idea of a video for families given a prenatal diagnosis for Down syndrome. I am a musical theatre actor and have always loved the song ‘Happiness’ from You’re A Good Man Charlie Brown. I wrote down my vision, rallied some moms, fundraised and made a video displaying the pure JOY and HAPPINESS our babies bring to us. This video, inspired an Instagram platform, Facebook page, and a blog called @happinessisdownsyndrome. Everyday I share a story of hope in our community. Everyday I pray that even ONE mom or dad who feels as desperate as I did sees my page and discovers she is NOT alone. There is a beautiful and rich community to be found.
Down syndrome is not the enemy. Isolation is the enemy. Preconceived and outdated notions are the enemy. Prejudice and bias are the enemy. Down syndrome has no limitations. There are people in the Down syndrome community stretched across the globe breaking down barriers and doing amazing things everyday. But, more importantly, people with Down syndrome have inherent worth and value. Just like you. Just like me. There is nothing to be afraid of and nothing to fear.”
This story was submitted to Love What Matters by Misty Coy Snyder from Madison, NJ. Follow her journey on Instagram (personal), Facebook, and her blog. Check out her YouTube video here. Submit your own story here, and subscribe to our best stories in our free newsletter here.
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