Norah's Hope 321

Welcome to Norah’s Hope 321! I’m Rebecca, Norah’s mom. Since you’ve landed here, you likely: 1) know our family, 2) are part of the Down syndrome community, or 3) seek information about what it’s like to have a child with Down syndrome. No matter the reason, we are delighted you are here.

Norah

Our daughter, Norah Elizabeth Hope, was born in November, 2018 with a diagnosis of Down syndrome. We found out early in my pregnancy that there was a high probability this would be the case. To say this news rocked our world would be an understatement. My husband and I were shocked, scared, and completely unsure of what to expect. So we researched Down syndrome day and night for weeks on end throughout my pregnancy. We read every research paper, blog, and book we could find. With research came knowledge, and with knowledge came so much hope for the life that our baby would have. By the time Norah was born, we could not have been more grateful and excited to welcome her into the world.

The First Inkling

The first inkling that your child may have Down syndrome can be shocking, scary, and even sad. Whether the news comes while mom is pregnant or after baby is born, it takes some time to process and accept. But here’s the thing: a baby with Down syndrome is still a baby first. When she was an infant, Norah needed milk, sleep, diaper changes, and love just like all other babies. As Norah grows, we see how she is so much more like her peers than she is different. She laughs, plays, cries, and has all the same needs as her 3 year old peers. Norah is a little girl first; a little girl who simply happens to have Down syndrome.

newborn baby girl with Down syndrome — 5-day-old Norah.

The Journey

The first three years of our Down syndrome journey have been full of appointments, specialists, therapy, and more love than we possibly could have imagined. Our initial fear and uncertainty about having a child with Down syndrome disappeared. Instead, we’re now consumed with a fierce, unconditional love and an infinite hope for our daughter’s miraculous life. This blog is dedicated to documenting our journey with Down syndrome and highlighting resources and tools that are helping us along the way. The ups of our journey far outweigh the downs.

We welcome questions and constructive, positive comments. We are grateful you are here.

Every year March 21 is World Down Syndrome Day (WDSD), celebrated by people all over the world. The date (3/21) honors the three copies of the 21st chromosome that all people with Down syndrome (Ds) carry. WDSD exists to raise awareness of Ds and celebrate people the world over who are blessed with that extra chromosome. Our family loves a good party, and if the reason is to celebrate our girl, then all the better!

Yellow and Blue on World Down Syndrome Day

This year World Down Syndrome Day fell on a Monday. Therefore, we spent the day before WDSD at the NC Zoo with friends from the NC Down Syndrome Alliance at their “Paint the Zoo Yellow and Blue” event. Yellow and blue are the signature colors for Ds awareness. That sprinkling of yellow and blue made it easy to acknowledge others from the Ds community. So when a Ds mom or dad sees another Ds mom or dad they don’t need to say a word. The nod of the head and the smile of understanding say, “I see you. I know. We are in this together. YOU ARE NOT ALONE.”

The zoo was great fun (check out their website here: https://www.nczoo.org/). The weather that day was pretty perfect. As a result, we spent hours visiting the animals, playing on the playgrounds, and generally just enjoying the gorgeous day with our Ds community.

“Paint the Zoo Yellow and Blue” at the NC Zoo, sponsored by
NC Down Syndrome Alliance on 03/19/22.

There were far more people at the zoo this year than there were last year! It was clear that pandemic restrictions are lifting and more people are getting out and back to their ways pre-pandemic. So many little ones were out enjoying the animals, which was heartwarming. It was also VERY CROWDED at some exhibits, so we took time to explore some of the less beaten and less crowded paths as well.

After lunch, families of loved ones with Down syndrome met at the butterfly exhibit to pose for a group picture. There were more of us there that day than this picture shows, but it gives a good idea of the showing we made in celebration of WDSD.

3…21…Go!

When I dropped Norah off at school the morning of 3/21 I was surprised and very touched to see that her classmates were wearing yellow and blue (courtesy of her teachers rallying the class/parents ahead of time), and her teachers were wearing t-shirts they had purchased in honor of WDSD. Fellow parents at Norah’s school reached out to my husband and me that day just to say how happy they are to know our daughter and grateful that their child gets to be Norah’s friend. It was a beautiful day and inspiring celebration of inclusion and acceptance of our daughter and of all people with Down syndrome.

Norah’s supportive and amazing preschool teachers.

We can’t wait to see all the ways people around us will celebrate diversity throughout the next year. To learn more about why celebrating differences is so important to us, go here: https://norahshope321.com/.