threadTALK Blog Series 14: Thoughts of a Mother with a Son that is diagnosed with Down Syndrome

When a little something extra makes life that much more wonderful. This month, we had the pleasure to interview Abby Nagel, a mother of two miracles, a beautiful daughter who came along all on her own after several failed fertility treatments and a son who is diagnosed with Down syndrome. Abby shares how she found the strength and joy that she thought was unimaginable through her children. What started as a rush of fear turned into an immense amount of LOVE that Abby wishes to share and inspire others through her platform. Read more to find out how Abby’s life has changed after having her son Rowen, and what “Love Doesn’t Count Chromosomes” means to her.

Q Tell us a little bit about yourself and your Instagram page/blog. How and when did you get your start as a content creator?

A I began my career as a 1st-grade teacher in 2004. I taught for eight years and then transitioned to administration in 2012. At that time, my husband and I were struggling with infertility. We had undergone IUI and IVF several times, all were unsuccessful. We decided to head down the adoption path, and midway through the process, we were surprised with a positive pregnancy test. In 2013 our daughter Isla was born--our amazing little miracle. Two years later we had another wonderful, even bigger miracle when Rowen was born with a little something extra. The months that followed his diagnosis were tough and forced me to do some soul searching. I had always had a passion for fashion and I knew I wanted to create a platform to advocate for individuals with Down Syndrome. I combined the two and The Extra Details was born in January of 2017 with a goal to spread EXTRA Style, Happiness and Love to whoever might stop by. I still work full time as a Title I Director and have grown my platform slowly. I've made amazing connections and continue to learn more and more about the blogging/content creator world each day. I have big goals for 2020. I want to extend my reach to better advocate and inspire others about the joy of Down syndrome.

Abby Nagel with Son that is diagnosed with down syndrome 

Q We absolutely love that you share your family life on your page. What was it like to find out that your son was diagnosed with Down syndrome and how has your life changed since then?

A Thank you! My family is my main source of inspiration. I love including them on my page! I most often share style and accessories, but they give me the strength and bravery to put myself out there. Rowen was unofficially diagnosed 24 hours after his birth. (His official diagnosis came when he was 1 month old.) On October 3, 2015, I experienced an all-natural water birth with our amazing midwife and we had a great first night with Rowen in our room. The next day, our midwife and a pediatrician visited and asked to talk with us about Rowen. They informed us that he had soft markers for Down syndrome and recommended we schedule a genetic test. A rush of fear came over me and I remember only holding it together until they left the room. Once they left, I sobbed. I was in shock. I was barely putting one foot in front of the other. I spent the rest of my hospital stay with swollen eyes and with feelings of loss. I've often felt guilt for my initial reaction, but I have learned to give myself GRACE. I want to tell other mothers that there is nothing to fear. There is so much LOVE and hope coming your way--more than you can ever imagine. Fast forward 4 years and I now look at that day as THE defining moment in my life. The moment that allowed me to realize my true strength. The moment that taught me to be brave and bold. The moment that has impacted all others that have followed. Without that moment, there wouldn't be The Extra Details. I would still live safe and take very few risks. I would not believe in my abilities and my voice like I do. Without that moment I wouldn't have my Rowen James. It was life-changing in the best way possible. In a way, I can never fully explain.

Q What was it like telling your daughter about her little brother's genetic condition and how has this shaped their relationship?

A It was actually a pretty simple and straightforward conversation. We explained that everyone was created a little differently. Rowen has an extra chromosome that may cause him to grow slower and take a little longer to learn things. She looked up and ask, "How was I created differently?". We shared that she was born with an extra special heart that has more love and compassion than most. She was thrilled and holds that as a badge of honor. She doesn't see an extra chromosome or Down syndrome when she looks at Rowen. She sees her little brother and enjoys all that he is. His silly. His spunk. His tenderness. His love. We don't treat him any differently and that translates into how Isla interacts with him. They fight, push, shove, tattle, tackle, hug, cuddle, play, share, defend, and LOVE. It's a very beautiful relationship to witness, one in which love doesn't count chromosomes.

Abby Nagel's Daughter and Son Hugging

Q What's a typical day in your life? How has your daily routine changed from having Isla to having Rowen?

A Our typical day begins with our little early risers around 6:00 AM. We have a few hours in the morning before school begins to eat breakfast, read, play, and get ready. I leave before everyone else to get to work by 8:00 AM. My husband takes the kids to school. Isla is in K and Rowen is in Pre-K. Isla gets off the bus after school and I pick Rowen up on my way home. After work/school we're typically on the go with dance, drama club, speech and feeding therapy, tennis, and meetings. Every night is booked. We're generally all home and ready for dinner by 6:00 PM. We have a few hours to unwind, and off to bath and bed, we go. Our weeks are a whirlwind, but we just make it work. The weekends are much more low key. We spend time exploring our city, finding new restaurants, relaxing at the lake, and hanging with family & friends. When Rowen came along, he turned our busy into busier. We noticed an increase in doctor appointments and therapies. Upon arrival, we were sent all over to get everything checked...his heart, his eyes, his ears, his thyroid, you name it. We were blessed to have a very healthy and strong boy. At around 2-3 months we started adding therapies with First Steps. Rowen had an hour-long Speech, Occupational, and Physical therapy each week. We also added Music and Feeding therapy when he was around 2 years old. We are continually searching for programs and therapies to help Rowen learn and grow to his fullest potential. We are challenged to find a balance between too many and not enough.

Q What advice would you give to expecting and new mothers whose child has been diagnosed with Down syndrome?

A Get ready for so much LOVE! Know that you CAN and WILL do this. Push fear aside and choose faith each day when you wake up. Stop worrying, but rather wonder about all the amazing gifts and talents your new little one possesses. Take it slow. Understand that you won't know everything and that's OK. Know that the challenges and struggles won't hold a candle to all the fun, joy, and happiness you will experience. You are one lucky mama and you get to experience life with a child who has a little something extra. Most importantly--NEVER compare! It's not only the thief of joy, but it will drive you crazy and it's just not fair. Each and every child is wonderfully made, perfectly imperfect, and so magically unique. Cherish every moment and know that YOU ARE ENOUGH.

Q Lastly, we love that you were able to relate your story with our designs. If you were to give a title to your life story, what would it be and why?

A Love Doesn't Count Chromosomes - This statement sums up all I want the world to know. Rowen's extra chromosome does not define all that he is. It is only a small part of his story. He is a brother, son, friend. He has blond hair and blue eyes. He is happy and thriving. He is a change agent and is doing BIG things. He deserves acceptance and opportunities. He is far more alike than different. HE IS AMAZING!

Abby Nagel's Family Portriat

Follow Abby's journey on her Instagram

8 comments

  • Posted on by Rhiannon
    Abby, you amaze me more and more with every day that passes! Your family is so lucky to have you, and I feel so lucky to have you in my life as well. Keep spreading your message of love!
  • Posted on by Courtney

    Thank you so much for sharing your story so beautifully, Abby! Such a wonderful lesson on love and hope. ❤️

  • Posted on by Aaron M.
    I literally cried reading this…Thank you so much for sharing!
  • Posted on by Terese

    Abby you are the sweetest and amazing person to know. Thank you for being so brave and sharing your life and all about Rowan. Sharing your journey as a family is helping other families that have children that are a extra special too!

  • Posted on by Jen

    Such a beautiful & inspiring family! Thank you for sharing!

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