5 Things I Want You to Know About My Child With Down Syndrome

Since I was a little girl, I always dreamed of being a mama. I always knew it would change me in ways I could never imagine, but you can never explain it or even dream one can feel what you are feeling once it happens. Each kiddo brings something new and incredible to the table. Something so raw and different and suddenly the world is seen through a different lens.

My world was absolutely changed for the better the day I became a mama for the first time — and with emotions I didn’t even know existed. Even though it took me 26 hours of
labor to get her into the world, this beautiful, bright-eyed lil’ lady, who we had been waiting on for 42 weeks, had me wrapped around her little finger. Her every move was engraved into my heart. I knew almost immediately I wanted to have a sister or brother for her.

Two years later it happened. We had another absolutely beautiful baby girl. A sister for Ella Mae. What we didn’t know until her birth was that she was rockin’ an extra chromosome. She has Down syndrome, and tomorrow is her 5th birthday. If I could shout it from the rooftops the top five things I want the world to know about my exceptionally awesome daughter on her 5th birthday? Well, give me a bullhorn, and let’s get to it.

1. I have extremely high expectations for this lil’ lady, and she exceeds them constantly. She works so hard to achieve things that may come easy for someone else, and it blows me away every day. Ruby is just like any other kiddo, though, and I believe that high expectations are half the battle. In the words of my handsome hubby, “If you expect a child to succeed, you increase that probability tenfold.” I believe that with all my heart, too.

2. She is in a general education pre-K classroom and, not to brag (OK, I’m going to brag), she knows her ABCs, letter sounds, lots of sight words and has even been teaching sign language to her peers at school. All the things her friends are learning and working on, she is, too. We are already working toward her kindergarten curriculum to get her prepared for next year. It is hard work, but she is always up for the challenge, as are we! We are constantly thinking of ways to incorporate and reinforce things she is learning and working on. She has a determination that drives her to keep working on something until she gets it, and I know it will take her far in life.

3. She has friends — tons of them. Everybody loves Ruby Doobs. She is like a celebrity everywhere she goes, and I believe know exactly why. She lives in the moment and is right there with whomever she is spending time with. She makes you feel loved and special, and it is contagious and infectious.

4. I believe she inspires everyone. She works so incredibly hard to achieve things, and when she does, she has a pride in her eyes that is undeniable. It makes her mama’s heart melt. Those victories, no matter how big or small, mean so much to our family. They push us harder to be the best versions of ourselves possible, as she does every single day.

5. Remember that inspiring part? She actually inspired us to start an entire organization in her honor. Yep. Those high expectations? We want her to have all the same opportunities as our older daughter, and that includes a higher education. Shortly after her birth, we started Ruby’s Rainbow, a nonprofit with a mission of granting scholarships to adults with Down syndrome for post-secondary education, vocational or enrichment classes while spreading the word on just how capable they are. I wasn’t even sure we would get any applicants, but every day I looked at my daughter, and I knew someday, with her strong spirit and determination, she would chase her passions and dreams and head off to college.

I have been so inspired over these last four years since starting Ruby’s Rainbow. We have been honored to be able to grant an incredible $185,000 in scholarships to 74 people with Down syndrome. To see the lil’ lady who has inspired an entire organization, and the amazing people they are helping, please take a minute to watch this video.

The Mighty is asking the following: What’s one thing people might not know about your experience with disability, disease or mental illness, and what would you say to teach them? If you’d like to participate, please send a blog post to community@themighty.com. Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Submit a Story page for more about our submission guidelines.