When I was pregnant with Hazel, before we knew it was Hazel, all we knew was that our baby was showing some significant markers for Down syndrome. We were devastated. No matter how hard we tried to convince ourselves that this baby coming was not going to have Down syndrome – deep down inside I think we knew. For the next little while we lived in a very sad, desperate, grieving, angry, confused place. We got in our beds – we turned the lights out, we didn’t eat, we didn’t speak, we didn’t shower – for what felt like an eternity. I know it was days, perhaps even a week. We slowly emerged. Then Matt said something that changed the course. He said, “if someone walked up to you tomorrow and handed you a baby that was sick, had Down syndrome, needed a little extra attention and didn’t have a mommy to love it and take care of it, you would wrap that baby up in your arms and do everything in your power to make sure that child was loved and cared for the best way you know how” I cried. 
I cried because I felt so terribly sad that a mother wouldn’t want her baby because they weren’t ‘perfect’. At that moment I decided that it was my mission to give this child everything they needed in life to survive. So we didn’t do anymore testing. I spent the next few weeks trying to keep this little love inside my belly for as long as my body would have it. I had moments I was still in denial. Moments of extreme sadness and many moments filled with fear. We survived by taking it one day at a time.

When that defining moment came, when the nurse placed a 5lbs baby girl in my arms. We knew. Sweet little Hazel had come to us with a little something extra. As she stared into my eyes with those little almond eyes of hers, I fell so deeply and madly in love with her. It rocked my world in a way I can’t explain. We stopped and silently took her in. We exchanged glances and little smiles. The kind with straight pursed lips and slight nods. Everything and everyone else in the room faded away. The first words I heard after Hazel was born were from her daddy, “she’s perfect.”

 

 

Here we are, 5 years later. We literally could not be happier, more proud, hold more love in our hearts for ALL people that are a little different. I try not to beat myself up too much about the way I reacted when I heard Down syndrome was a possibility for us. I don’t let myself feel guilty for the way I reacted because we all need to go through our own process. We are all entitled to our grief and to carry that grief however we choose. I mean, the final stage of grief is acceptance. I would do it the same a million times over if, in the end, it brought me to the place I am now. We have been blessed beyond measure to have had such an incredible daughter choose us. And maybe we didn’t choose her, but if I was given the chance I’d choose her a million times over. She’s opened a little faucet in our hearts and souls that gushes with unconditional LOVE, insurmountable PRIDE, and humbling GRATITUDE.

 

 

I think if I could go back and talk to myself (or any new family) back in those really fearful days I might say something like this…

“This seems bad. I know. Like really scary-crawl-in-bed-and-ugly-cry-for-days bad. I get it. Feel it. Panic. It’s OK!

Hazel with new baby sister Nola

 

Now listen…
Trust me when I tell you that this is going to be OK. You just don’t know anything about these very intimidating words, Down syndrome. Look into your child’s eyes, and trust that something grand is about to begin. You will see down syndrome and you will not be scared, you will be proud. You will see an exotic type a beauty that you could only dream of being a part of. Those eyes are something you made. They are calling you, waking you and sparking something in you that you never knew was there. You will want to share this with the world and brag about your gorgeous, perfect child just like you thought you would. These eyes will look at you, take you in and love you. Down syndrome will become something that only exists behind those eyes. Everything else about your baby will come first. You will feel peace, I promise. You will feel love, I guarantee. You will question the future, I understand. You will be beside yourself at the beauty that is Down syndrome, I can’t wait!
Oh gosh!!! Ruby’s Rainbow. What can I say about Ruby’s Rainbow? The first time I heard about it, I thought to myself, “Of course, people with Down syndrome go to college” (like a light bulb went on in my head) and “What an amazing idea to offer them scholarships” and finally, “I need to read more about this organization.”
I found Liz. And Ruby. And her family. The more I learned, the more I read, the more I became inspired. Inspired by Liz and her ginormous heart, her mission, her positivity. Then further inspired by every single one of her recipients. The determination, the skills, the abilities, the support of their families – Everyone presuming competence. It left a mark on my heart. A little RR branding scar if you will. It has been such a source of hope every single day for me to see the message of worthiness, capability, success, and achievement for individuals with Down syndrome.
The thought that only 50 short years ago people with Down syndrome were institutionalized does not elude me. THAT is what makes Ruby’s Rainbow so important. THAT is what makes Liz’s and the Ruby’s Rainbow message so incredibly powerful. 
I adore Ruby’s Rainbow because Liz helps the world see, hear, watch and STAND beside a group of people who achieve. A group who at one time, were told they WERE NOT CAPABLE. To all those out there who are afraid for their children’s future? Who want to believe that ANYTHING is possible with that tiny extra chromosome? Who worry that your children will not lead a life full of achievements? Follow along with Ruby’s mission. You get to watch and help Ruby’s Rainbow show the rest of the world JUST how far people with Down syndrome have come. How our friends rocking that extra chromosome are CAPABLE, WORTHY and DETERMINED. How the future is a bright freaking shining star, that all our children’s finger tips are only inches away from grabbing. Just think how much easier it would be for them to grab if we gave them a little boost. To me, Ruby’s Rainbow is that boost for many individuals with Down syndrome.
Sharing the message that higher education, independence, driving, marriage, success and happiness are not only attainable but likely. I could watch the acceptance videos a thousand times and feel so proud EVERY. SINGLE. TIME. I could watch the videos of Nella and Ruby taking the world by storm and cry tears of hope EVERY. SINGLE. TIME. That’s what RR means to me! Empowering people with Down syndrome EVERY. SINGLE. DAY.