“The day Estelle was born is the day I learned she has Down syndrome. I had spent the morning wondering if this could be the day. I was supposed to have 2 more weeks, and I needed those 2 weeks to finish planning and preparing for our sweet new baby. I guess I was in denial, maybe subconsciously trying to will her to stay put so I could finish my to-do list. I needed to stock up on groceries, finish the laundry, and we were still trying to settle into our new house, which came with a lot of renovation projects! I definitely did not have time to be in labor that morning, but our girl was not getting the memo.
All at once, I knew she was coming and thankfully, my husband had the divine discernment to stay home from work. When it was time, it was time! We rushed off to the hospital and she was born within an hour of our arrival. But that beautiful bliss which followed her delivery was quickly interrupted by the reality that something wasn’t right.
‘She just needs a little time.’
‘Her cord was just a little tight around her neck.’
‘She’s fine. She’s fine.’
But she wasn’t crying, and then the NICU team came rushing in. The serious tone of the room was getting thicker as lights began switching on and more and more people came flooding in. In between the reassurances everything was fine, the doctors and nurses started asking all these seemingly random questions. ‘How old are you? You had prenatal care, right? Were all your labs normal?’ My doctor hadn’t made it in time for Estelle’s quick birth, so while the questions seemed out of place at this moment, I convinced myself they were normal.
Deep down, I knew something was off. I had been through this twice before, and this was all so very, very different. I kept looking to Devon, trying to read his face but, outwardly at least, he joined the consensus of the room, ‘She’s fine. She’s okay!’ The questions and assurances continued as the NICU team worked diligently on my tiny girl laying up on the isolette table. I could see their whispers. I could feel their suspicions and concern. And then they decided to take her away.
For a brief moment, they paused to lay her on my chest before returning her to the isolette and wheeling her out of the room, taking along the doctors and nurses, and my husband. The chaos of the room seemed to switch off with the lights and I found myself alone in a dark delivery room. The silence was deafening as I struggled with my battling thoughts for the longest hour of my life. Finally, I heard Devon’s voice call out from the door, ‘Jill?’ There was something in his tone that instantly told me to brace myself. I held my breath as he walked over to me and said the words that would forever change our world, ‘They think our baby has Down syndrome.’ That was it. That moment. From that sentence on, our lives would never be the same.
The 2 weeks she spent in the NICU was the gnarliest emotional rollercoaster I’ve ever been on. I’d spend the days at the hospital, immersed in her magical presence, and my evenings comforting my two kids at home as they tried to process this unexpected situation. At night, after everyone fell asleep, I’d cycle through all my fears and anxieties. The attacks were heavy. I had every negative thought you could think of. Was she going to be okay? Was our whole life going to revolve around hospital visits now? I was grieving all the dreams I had built up over the last 9 months. I didn’t understand why everything was unfolding this way. The little girl I had envisioned in my mind was fading away, but what I didn’t realize at the time was the actual little girl I had just given birth to was so much more than I ever imagined.
Bringing her home was just the beginning of our new chapter. We spent the most amazing week at home, just our little family. We were all so smitten with our Estelle, and watching my kids swoon over their new baby sister was everything I had been longing for. She was absolutely perfect. I was amazed at how quickly all of the fears I had been stockpiling, while she was in the hospital, seemed to fade away. As we settled into our new normal, I started to glimpse just how blessed we truly were. We dove headfirst into the Down syndrome community. We wanted to know everything there was to know and meet everyone we could possibly meet. We were blown away by this new population of people we were suddenly connected to. It was like this magnificent club we never even knew existed, and how lucky were we to be part of it! And yet we quickly discovered the very best tour guide through this unexpected path was our very own little Estelle.
Every day with Estelle brought us all the typical wonder and awe you’d experience with any new baby, but we also experienced so much extra. With the extra appointments and therapies, we were given extra people in our corner to help us and cheer Estelle on. With the extra work our girl put in came extra celebration as she achieved each new milestone. Extra events and conferences added extra friendships and fun adventures for all of us. With each new experience, we began to discover the magic of that extra twenty-first chromosome. Estelle was teaching us to slow down, to press into the beauty of every moment. We were learning to communicate differently as we met more individuals with Down syndrome. We listened differently. We started to see people in a new light. Learning to understand people of different abilities brought us new insights into understanding our own selves. Embracing the differences in others gave way to personal freedom to embrace our own unique differences. This unexpected diagnosis was shining a light on society’s undeniable and problematic obsession with ‘perfection.’
The beautiful reality of Down syndrome we were discovering started to seem like a rose-colored fantasy when we looked to the current perception most people still hold. Even people close to us were stuck in these outdated ideas of everything a person with Down syndrome could not be. Well-meaning loved ones expressed condolences, and unnecessary assurances we could try for another ‘real baby.’ We heard all the silly stereotypes. We had heartbreaking conversations with close friends who laughed at our goals for inclusion, arguing it’s unfair to the ‘normal kids.’
So, while we have come to understand what Down syndrome really is, it is clear the world still has a lot to learn. Yet instead of getting disheartened, we have decided to become the best advocates we can be for our girl. Along the way, we’ve discovered an army of advocates working to shift the narrative in the most inspiring ways. Estelle is showing us who she is. Day by day, she is becoming everything she was created to be. Her personality is so uniquely her, with her own talents, interests, likes, dislikes, and fantastic little quirks. We feel so honored to have these front row seats to this blossoming little wonder. As she carves out her own inspiring path, we will be there to cheer her on. We will be standing proudly beside her, advocating for her right to assume her equal place in this world.
There is magic in her extra chromosome. It’s a magic that has transformed our world into the most vibrant and colorful version of life we could have ever dreamed up. That supernatural gift found me in a dark and silent delivery room and rocked me to my core. It turned my fears into abundant optimisms. And now I won’t ever stop fighting for my girl until the whole world can see and experience that magic for themselves.”
This story was submitted to Love What Matters by Jill Collinge from Ventura, CA. You can follow their journey on Instagram. Do you have a similar experience? We’d like to hear your important journey. Submit your own story here. Be sure to subscribe to our free email newsletter for our best stories, and YouTube for our best videos.
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