On June 9th, 2017 we welcomed our first child - a beautiful daughter, Raegan Hope. She came into the world on her own time - very quickly and 2.5 weeks early. Before her arrival, I often dreamed of who she would look like - and what that moment of seeing her for the first time would feel like. I imagined how much joy would fill the room. When she was born, we were in fact overcome with joy - it is an indescribable feeling seeing your baby for the first time - but our joy was quickly replaced by trauma after a birth diagnosis.

As I held her, I couldn't shake a feeling that something more was going on. I asked my husband Tyler if he thought everything was fine and he said yes - but in our hearts we knew it wasn’t. You could call it mother’s intuition, but when I looked at her, I just knew. She was perfect, tiny and so sweet - and she had Down syndrome. I (sadly) had not had anyone with Down syndrome in my life before, and in those moments, I knew she would be diagnosed with it. A short time later, our doctor reentered the room and sat at my bedside. He placed his hand on mine and with a somber tone said that they suspected our baby had Down Syndrome. I nodded my head in acknowledgment, and my stomach sank hearing those words spoken.

I was completely numb and in denial of what was happening. I coped by completely avoiding all discussion relating to Down Syndrome. All I knew was that a diagnosis was not what we had planned for our daughter, and we felt overcome with grief when we should be overcome with joy. We had medical staff coming in and out, giving us handouts of information relating to a Down Syndrome diagnosis, and doing lab work and assessments on our daughter. Our hearts ached to watch our baby girl get poked and prodded for all the tests (though we are so grateful that she was so healthy and was able to stay with us the whole time).

As visitors came and went from that tiny hospital room, my heart swelled with anxiety, fearful that the pediatrician or a nurse would walk in while family members were there and say something about Raegan’s diagnosis. I was not ready to accept it, let alone share it with others. Neither of us of us were, really. Tyler was willing to tell his parents, but I didn't want to tell anyone. Ultimately, we wanted them to see her as our beautiful new daughter, not a diagnosis. I wanted to retain as much “normalcy” as possible amidst the constant reminders of our unique journey throughout our three day hospital stay.

In the days and weeks following her birth, we learned that Raegan was having a hard time gaining weight, resulting in around the clock feedings and a severe lack of sleep. I struggled to balance the heavy emotions we awaited the genetics tests results, all while caring for my little one who required so much extra effort to feed. Enough is a word that I did (and still occasionally do) struggle with on this journey. After a few weeks of anxiously awaiting the results of Raegan’s genetics test, we met with our pediatrician who confirmed the positive result of Down Syndrome - specifically Trisomy 21. Medically, Raegan's diagnosis would be considered a random occurrence, but we were confident that God had written this in our story. Despite this confidence, we wrestled with our new reality.

Soon after Raegan turned one month old, we had another pivotal appointment - a baseline heart screen at a major children’s hospital nearby. They performed a non-invasive ultrasound to look at her heart in full, as the cardiovascular system is a major risk area that can accompany a Down Syndrome diagnosis. Up to that point, she had been totally healthy and required no NICU stay. We were terrified that she could have an underlying heart condition - but praise God, she has a healthy heart and now requires no follow up with a cardiologist.

Before Raegan was born, I prayed fervently that she would be healthy - I had gone through a miscarriage prior to her pregnancy, and experienced a scare early in my pregnancy with her. When we made it to our 20 week anatomy scan and they told us she was a girl, we saw her profile on the screen and knew the perfect name for her was Raegan Hope. Raegan means "spiritual strength", which was so fitting because of the way God had strengthened us (and continues to) through our journey with her, and Hope because she was our "rainbow baby" - our hope after the storm. At the time that we chose her name, we were unaware of Raegan's Down Syndrome diagnosis and its potential health implications; but here she was, born healthy and an answer to prayer in more ways than we could fathom.

A few days following her heart screening, my husband posted a carefully written blog sharing her diagnosis of Down Syndrome with friends and family. We both knew it was time, but it was the hardest thing I had ever done, releasing this information about my most precious gift. The inability to control others’ response and facing my own acceptance that she had Down Syndrome was almost more than I could handle; But, there is so much freedom that comes from stepping fully into what God has planned for us. This truth is something God began to teach me then, and continues to teach me today in my motherhood journey. The amount of love and adoration we have for Raegan far outweighs the doubts and fear her diagnosis can bring - and it always has.

Like any other parents, we still have unknowns ahead of us; but where there used to be so much fear, God has given us confidence and compassion. My goal as Raegan's mother is to show the world that my daughter, who has Down Syndrome, is able to accomplish whatever she sets her mind to. Yes, Raegan works hard to do things other two year olds do naturally, but she still gets there. She is very focused and takes in all her surroundings. She is a very quick learner and has a tender and giggly nature - she even signs “thank you” now when you give her kisses. Raegan is not unlike any other toddler in that she wants to play, eat snacks all day and has frequent meltdowns - she feels all the emotions! Raegan is truly more alike than she is different, and has taught me that I was so wrong about Down Syndrome. She has taught me to celebrate even the “little” things as big things and to be patient knowing that all things will happen in God's timing, when she is ready. My hope is that the world will see Raegan as a worthy, beautiful, and treasured part of society, with no limitations set out for her. I hope that others will look at her and see an adorable little girl with a bright future before they see a diagnosis.

When Raegan was first born, we heard the phrase "you hit the jackpot” when you have a child with Down Syndrome, and now I can say for myself that is definitely true. Yes, we have hard days, but we wouldn't change a thing about our story. God has brought us more love and compassion on this journey than we could have imagined, and we truly consider ourselves a part of

“the lucky few.”

To learn more about Raegan and follow the Scott family’s journey, follow @laurenhscott1 on Instagram!

“the lucky few.”

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