Noelle, You Make Me Better

I vividly remember the day I found out our daughter would likely be born with Down syndrome. My husband and I were in California for my sister-in-law’s wedding, and I remember getting the email that our NIPT test results were in. I was anxious to learn the gender of our first baby.

When I opened the results, the only thing I saw was that our baby had a 93% chance of having Down syndrome. I couldn’t believe what I was seeing, and I thought there was no way this was real. My excitement immediately turned into fear. We read the results before a doctor called us, right before we boarded a flight back home to Colorado. The genetic counselor called us at the airport and said, “I’m so sorry, it looks like you’ve already seen the results. Let’s make an appointment so you can come in to talk about your options.”

We met with him the next day, and I don’t remember much of the conversation, as I still felt so numb. I remember him saying sorry several times and handing me a pamphlet on Down syndrome. He talked a lot about the health implications of individuals with Down syndrome and the difficulties associated with the diagnosis rather than what these individuals are capable of achieving. I remember blocking him out because, in my head, I thought, there is still a 7% chance she doesn’t have Down syndrome.

I made the mistake of googling Down syndrome and sending myself into a spiral. My husband and I decided to get an amniocentesis to confirm a diagnosis to better prepare ourselves. It was agonizing to wait for the diagnosis, as they couldn’t perform the amniocentesis until the membranes fused, which wasn’t until about 19 weeks.

Once we had an official diagnosis, I definitely grieved again. This time, however, instead of researching Down syndrome on the internet, I decided to seek out real stories on social media or through organizations such as Jack’s Basket. I finally started to feel encouraged. I saw babies and kids with Down syndrome who were thriving. I felt like I wasn’t alone, and for the first time, I felt like it was going to be okay. She was going to be okay.

I reached out to Jack’s Basket and received our basket and felt so hopeful. It was the first time I felt like our baby was celebrated. From that point on, I felt an overall shift in my perspective. I started messaging mamas on Instagram and connecting with our local Down Syndrome Association. Everyone was so welcoming and loving and told me that their child has been the biggest blessing in their lives. They reassured some of my fears and let me know they were here for me every step of the way. I felt a level of peace that I hadn’t felt.

Fast forward to April 4, 2025, when we welcomed baby Noelle into the world. I looked at her and thought that she was absolutely perfect and didn’t know why I was so scared. I am so proud of all of the progress she has made in the last year. She works so hard during her therapies, and even if she gets frustrated at times, she doesn’t give up. She is very socially motivated and such a smart girl. It’s fun to watch her learn and grow, and each milestone has been so exciting. Even though she may take a little longer than her peers to achieve her milestones, I know she will get there in her own time, and it has taken the pressure and stress off not having those expectations.

I want to encourage any parents out there who just received a diagnosis- whether it’s a prenatal or birth diagnosis. I know that it’s scary at first, and it’s okay to grieve the child you thought you would have. But I promise you that it’s going to be okay! Your child is going to be amazing, and they will teach you so much about empathy, patience, joy, love, and so much more. Noelle brightens my day every single day.

I’d also encourage you to find organizations like Jack’s Basket to celebrate your beautiful child. Receiving my basket truly made me feel like I was not alone in this journey. There are also so many amazing local communities where you can connect with other moms/parents who understand what it’s like to raise a child with Down syndrome. You don’t have to do this alone!

It is an amazingly beautiful life. Noelle has made me better already, and I will forever celebrate her sweet life!

-Megan, Noelle’s Mom (Colorado)

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