I have had many jobs in my lifetime, from driving a train to working in a bingo hall, but I always knew my most important, rewarding and meaningful job would start the day I became a mama. Deep down in my heart I always knew I would somehow, someday become a mama. It’s so hard to describe the feelings you have for your child until they are actually here, on this earth, in your arms. Being their protector and lifeline, my heart was fuller than ever before, but also ached in a way I had never imagined. There is a reason why “love you so much it hurts” is a term used. You want so desperately for the world to be kind to them, to love and nurture them as you do. So when our second daughter Ruby was born unexpectedly with Down syndrome in 2010, my fears for her future were amplified a little more then with her big sis Ella Mae. I always say that Ruby came “early, tiny and rockin’ and extra chromosome” and there were so many other scary things surrounding her birth that there was really no time to think about Down syndrome. We were in survival mode and just wanted to be able to take our baby girl home.
Fortunately, after only three weeks in the NICU, we got to bring her home right before Christmas. If I am being honest, I didn’t know much about Down syndrome or really even know anyone with Down syndrome growing up. It makes me sad to think of that now knowing how much Ruby has enriched our life and the lives of people all around her. So the only thing I really “knew” about Down syndrome was what she showed me: She was strong. She was capable. She was determined. She was smart. And she was adorable. But of course as a new mama on this unexpected journey, I wanted to know EVERYTHING there was to know about Down syndrome…so when I got home I went out to the library and literally checked out every book I could find. But you know what? None of the books depicted this perfect little human that I watched grow every day. This perfect little human who worked so incredibly hard every single day to be the best lil’ version of herself she could be. . None of them talked about all the amazing things she was going to do with her life, the possibilities or even the opportunities that may be available.
She wasn’t even a few months old, but she had already taught me so much about resilience, acceptance and patience. I knew there was more. I knew she was more, was better, and was capable of amazing things…things that books and society wasn’t telling me about. So it was at that moment I shut the books and decided to let her guide me and show me the way. Her future was not going to be determined by some outdated book. I was going to do my best to give her all the right support to help her grow and thrive…but only she would determine how high she would fly.
The moment I held Ruby for the first time, I literally knew I had to do something to show the world what I saw in my daughter. It was almost like a lightning bolt shot out from her heart to mine, and I had this insane bright light and energy waiting to burst out of my soul. After getting her home and settled, I really started wondering about the possibilities for her future. I figured I could control the “now” by being sure she got the therapies she needed, working with her, including her in every aspect of our life…but what about the future? I knew I wanted her to have all the same opportunities her big sister may have someday…including college. I remember so clearly coming to my husband when Ruby was about 6 months old and saying, “I think I want to help someone with Down syndrome go to college.” We didn’t even know if people with Down syndrome were going to college, but I knew in my heart Ruby was capable of amazing things and I wanted to help someone rockin’ it-just like her- go and do amazing things. This is when Ruby’s Rainbow (www.rubysrainbow.org) was born. Well, actually Ruby’s Rainbow was likely born the first time I held her…I just didn’t know it then. Her spirit and determination has inspired us to start a non-profit and stand up and shout as loud as we can that people with Down syndrome are CAPABLE. It is amazing to think in the 7 short years since her birth we have granted $430,000 in scholarship funds to over 150 people with Down syndrome across the nation who are going for their dreams of higher education and independence…all because of my little lightning bolt. I used to say that I was going to show the world how cool and capable she was…but I really don’t have to. She’s got that one covered.
MORE ABOUT RUBY’S RAINBOW:
Ruby’s Rainbow is a 501(c)(3) non-profit organization and was inspired by our own lil’ lady, Ruby. At her birth, we discovered she had an extra special chromosome. Our expectations for her did not change, and we vowed as a family to give her all the opportunities we could to learn, grow, flourish and become an important contributor to society and to the community.
Our mission at Ruby’s Rainbow is to grant scholarships to adults with Down syndrome who are seeking post-secondary education, enrichment or vocational classes. It is our goal to create awareness of the capabilities of these amazing individuals and help them achieve their dreams of higher education.
We not only grant scholarships; we also love keeping track of Ruby’s Rockin’ Recipients throughout their educational programs and beyond. We hope reading about them will inspire others to go for their dreams! We believe that life and learning don’t stop after high school, and it shouldn’t for people with Down syndrome either! At Ruby’s Rainbow, we want to help these amazing individuals reach their highest potential.
To find out more about Ruby’s Rainbow, be inspired by our Rockin’ Recipients, or donate you can visit www.rubysrainbow.org. You can also follow @rubysrainbow on Instagram or Facebook!
COLLEGE OPTIONS FOR PEOPLE WITH DOWN SYNDROME:
After Ruby’s birth, it was very eye opening and inspiring for me to learn that people with Down syndrome were going to college. I believe that having this expectation from a very early age, whether they decide they want to go or not, can change the path of that individual. Just seeing a different, brighter and more independent future…and raising the expectation is such a HUGE key to helping them be the best they can be and reach their full potential. There are over 260 programs on college campuses across the nation for people with intellectual disabilities…and they are growing every year. They range from residential and non-residential programs on four year campuses to community college courses. Some are living on campus, fully immersed in college life, getting the supports they need to grow their independence, while some are commuting but still a major part of campus life. As with any individual, not all programs may be a great fit. Think College (wwwthinkcollege.net) is an amazing resource that will tell you the programs in your area and all across the nation so you can find one that may best fit your loved one!
It is amazing to watch our Rockin’ Recipients grow through their college experience. They are taking classes to nurture their interests, growing socially and emotionally, and gaining job and life skills just like any college student does!! Most of them find employment once they graduate and some even live independently. These are dreams that parents of children with Down syndrome might have felt like they had to tuck away…but our Rockin’ Recipients are living proof to keep those dreams alive!!!
And as always, please feel free to follow along on our journey as we share Ruby’s accomplishments and those of our Rockin’ Recipients as we continue to show the world just how cool and capable peeps rockin’ that extra chromosome are!!
Liz resides in Austin, Texas with her handsome hubby, Tim, Ruby and her oldest daughter, Ella Mae. Her love for her family is what inspired her to start Ruby’s Rainbow and they have been helping people with Down syndrome go for their college dreams since 2012! They enjoy spending time as a family and look forward to continuing their mission and passion of showing the world just what people who are rockin’ that extra chromosome are made of!!