The beginning of our future with down syndrome
We didn’t know Ruby had Down syndrome until her birth. I always joke that she came early, tiny and rockin’ an extra chromosome. I had my first daughter, Ella Mae, all natural at a birthing center with Mid-wives, just how I wanted it to be (minus the super long and painful labor…ha!) And just assumed that was how this next one was going to go. Although this pregnancy did feel a little different, the thought of having a child with special needs never crossed my mind, or that it would happen to me. I went in to see my mid-wife at 36 weeks and measured small so she sent me to the neo-natal doc immediately, who then sent me straight to the hospital. It literally felt like a dream, like an out of body experience. How could this be happening? After an emergency C-section and weighing in a little over 3 lbs., they whisked her away after me getting just a tiny glimpse and one sweet kiss from my lil’ lady. I lay there in the cold room just thinking..."What the heck is taking so long?? Just stuff everything back in and sew me up so I can get to my baby!!" It seemed like an eternity, but finally they wheeled me into a recovery room where my body was shaking and teeth were chattering so loud I could barely concentrate on what my hubby was saying. "She's doing good…She squeezed my finger...breathing on her own.” And then the moment that rocked our world...
In one’s lifetime I think every experience brings you to where you are today, but certain ones define who you are as a human being. For me, I think all my life-learning experiences were preparing me for this one moment...luckily I have had lots of them, so I think I was ready...
Ruby's Doctor, one we had not met yet, comes into the recovery room and is telling us the details of her medical needs...she will more than likely be in the NICU for a few weeks...she is on oxygen to help her, although her lungs are good…yada yada yada. At this point I am physically holding my jaw closed to stop the chattering so I can try and hear what he is saying. And then he says without warning, "She has several soft signs of Down syndrome" and proceeds to go over them...large gap between big toe, space between thumb and index finger, low muscle tone, ears slightly low. He goes on to say they are pretty sure but are going to send off the chromosome testing and we will know in about a week. "OK" he says… and just walks off. WOW!! My hubby looks down at me and says "did that conversation just happen?" I wonder now through this experience if doctors become numb to the fact that they are "rocking your world"...but I guess there may not be a "right way" as everyone is different and what might be the "right way" for one is not for the next guy.
I am lucky in the fact that my hubby and I are one in the same, for the most part, when it comes to dealing with life situations. To us, there is only one way to go...forward. We both process for a few minutes...and then all I can think about is holding my sweet baby girl and kissing those tiny cheeks again! As soon as I can feel my legs move I insist that the nurse put me in a wheel chair and roll me down to the NICU. On my way there I have a looming fear...am I going to be able to give her everything she needs to grow and be all she can be? Can I rise to the challenge of loving her in the way she deserves? I had been around only a few children with disabilities before, so I was unsure of the road ahead and what it meant to have a child with special needs. When I got to the NICU and saw my new beauty...she had an oxygen mask on, tubes everywhere, so it was quite the ordeal to get her in my arms…I knew.
I knew she was strong. I knew she would teach me and guide us, give us the strength we needed to be the parents she needed. I knew that extra chromosome was no mistake…she was perfect in every way. She was special, not because she had Down syndrome, but because she was our wonderful lil' lady that possessed the best parts of both me and my hubby in that extra chromosome. I knew then our journey ahead might be different then we had planned, but life is beautiful…and at the end of the day I got to kiss those sweet, perfect little cheeks and call her mine.
The moment I held her for the first time I knew something inside of me was different. I think it is that way with any child, I certainly felt that way when I held Ella Mae for the first time, but with Ruby I felt this huge desire for the world to see what I saw in her. I didn’t know anything about Down syndrome until she was born, and I didn’t really have anyone in my life growing up that had Down syndrome. Looking back on that now it makes me sad…all those years of not having all these awesome and amazing individuals in my life!! She was in the NICU for almost 3 weeks after her birth, and once I got her home I started researching and a lot of the books and information I found was outdated and didn’t depict this perfect lil’ human that my hubby and I had created. This determined, smart, capable person that I had the honor to witness bring her “best” every single day. I knew I wanted to help this community of people in some way…and I knew I wanted Ruby to have all the same opportunities as her big sister. I wanted her to be able to follow her passion and dreams, find a fulfilling job, have amazing life experiences, and go to college if she wanted to.
As I researched I found that there is so much for the little guys, but once they graduate high school the opportunities and funding drop dramatically. Historically people with Down syndrome were left waiving from their front porches as their friends and peers head off toward a life of independence and chasing dreams. The reality is they want the same things in life that we all do…and why shouldn’t they have these opportunities and experiences? The more and more I thought about it I wanted to help people “rockin’ it” just like my Ruby Doobs go for their dreams of independence and help them be the best versions of themselves they could be. My heart kept drawing me to the future and what that may look like for my daughter. Soooo……one day when Ruby was about 6 months old I turned to my hubby and said, “I think I want to help someone with Down syndrome go to college.” He was like, “Do people with Down syndrome go to college?” I said that I wasn’t sure but “why not?” and I was determined to find someone that was and help them go for their dreams. I knew that my daughter was capable of so much more than the world gave her credit for, and I wanted to show them just what peeps with Down syndrome were made of! Let me be real for a minute here though. I knew NOTHING about non-profits, or starting a non-profit and certainly not how to run one. But one thing that I did have was this little lady pushing me and inspiring me every day. Showing me that she was worthy. Showing me she was capable. Pushing me to try harder, do better…to DO GOOD.
My first goal was just one $2,000 scholarship. But that first year, guess what? We were able to grant ELEVEN scholarships!!! It was then that I knew we were on to something. People were not only believing in people like my Ruby, but investing in their futures!! As a mama, that means more to me than anyone will ever know!!
To date we have granted $430,000 in scholarships to over 150 peeps rockin’ that extra chromosome!! What started off as an idea and a dream when my daughter was about six months old has exploded into movement and a different future and perspective for people with Down syndrome. There are over 260 programs on college campuses nationwide for people that have intellectual disabilities and that number is growing every year because there is such value in them, not just for the person in the program, but for the community as a whole!
I could have never imagined all those years ago that this is where my life’s work and my heart would lead me. I feel honored every day to be able to help in some way and it means so much to me to be able to show the world just how cool and capable people with Down syndrome are!! Down syndrome has rocked our world in such an amazing way and we are so grateful!!
Awareness and Inclusion for people with Down syndrome
Another huge part of what we do hear at Ruby’s Rainbow is the awareness piece. It is my hope and dream to show as many people as possible all over the world just how cool, capable and worthy people with Down syndrome are. I believe raising the expectation is the first step, so we love sharing stories of past and present recipients, stories of their college adventures and accomplishments. We also love sharing stories of our very own Ruby, helping families and others see that she is just like any other kiddo. Some of my favorite emails are from new moms who have just gotten a diagnosis of Down syndrome for their child and they said they were crying tears of heartache and fear, and then they found Ruby’s Rainbow and saw all these faces...all the bright, capable and amazing faces of our recipients (and Ruby!)…and suddenly they were crying tears of joy and hope for the future. Now they have a different expectation and hope for their child and they see a different future, a bright future full of opportunity and possibility….and I truly believe that changes the future and path for that child.
We believe inclusion is so important, not only for the people being included, but for the entire community. We are lucky that Ruby is in a school that believes in inclusion with their whole hearts, so we wanted to share what a "day in the life" of her in kindergarten looks like as an example for parents and educators. We hope to open conversations, show the benefits and just what it can do for the individual and the community!
Click the link below to watch Ruby's Story of Inclusion: