Special Needs Spotlight || Ruby

Miggy: Hi Liz and welcome! I’m so excited to have you here today talking about your amazing Ruby girl and sharing your Down syndrome adventures with us. First take me back to the day you found out Ruby had Down syndrome? Do you remember how you first felt? Can you compare those first thoughts and feelings with how you feel now?

Liz: We did not know that Ruby had Down syndrome until her birth. I always joke that she came early, tiny and rockin’ an extra chromosome. I was hoping for a natural birth with our midwife like her older sister, Ella Mae, but she had her own agenda. They ended up taking her via emergency c-section at 36 weeks because she stopped growing at 32 weeks in my belly. She weighed 3 lbs, 12 oz at birth and I remember them whisking her away after only one little kiss on her cheek and all I could think about was them “stuffing everything back in, zipping me back up and getting me to my baby!” It seemed like an eternity, but finally they put me in the recovery room. Tim had already seen her a few times and kept coming in telling me how she was doing, but when the doctor came in to tell us that she had several soft signs for Down syndrome at that point I really didn’t care, I just wanted to meet my baby. My main concern was “is she going to live?” And I just wanted to hold her and kiss her and love on her and let her know that her mommy was going to be there…always. It’s funny because now, being the sassy 7 year old that she is, will sometimes say to me “leave me alone, mommy.” And I’m always like “girlfriend, I will never leave you alone” to which she now rolls her eyes…ha!

I think for us the diagnosis did not seem like such a big deal at the time with all the other things going on and we didn’t have time to think about the diagnosis. I didn’t know ANYTHING about Down syndrome, but my hubby was a Special Ed teacher at the time and really was like “We’ve got this” so I just took his lead. And there was really only one way for us to move…and that was forward. My whole world changed in an instant but the minute I held her none of that mattered. She was this perfect little human that we had created together, no matter how many chromosomes she had. It took about a week to get the test results back to confirm she had Down syndrome and I remember as we were walking into the NICU to hear the results (she was in the NICU for about 3 weeks) my hubby and I talking about how we would be disappointed to find out she didn’t have Down syndrome because at that point it was already a tiny little part of who she was. Of course she did and the rest is history, but If I had to compare my thoughts then to now I would say the main thing that has changed is my fears. My fears for the future, fears for her health, fears for her friendships, fears for the way others may accept and love her. Most of those fears have melted away into a beautiful mixture of hope and excitement. She shows me everyday that she is making her own way, creating her own path and I cannot wait to see where it leads!

Miggy: Of course like most conditions Down syndrome exists on a spectrum. Could you explain how your Ruby’s needs affect her and your day-to-day life?

Liz: Ruby has speech and occupational therapy several times a week, so we have dedicated lots of time to really helping her in these areas in our home life as much as possible. As far as day to day life I would have to say we have really try just treat her just like her older sister, and have the same expectations for friends, family, teachers to do the same. I mean, I think parenting is so freaking hard in general, so I wouldn’t say certain things are harder because of Down syndrome, I would just say that might look a little different, but again…just being a parent is hard at times with any kid! I think the things she struggles with that we work harder with her on make those accomplishments all the more sweeter so it kind of balances life out a little and has given us such an amazing gift of perspective.

Miggy: What are the biggest worries you face for Ruby? What are your hopes and dreams for her?

Liz: One of Ruby’s biggest delays was speech, which communication has always been one of my biggest fears for her. Friends have always been like family to me, and I wanted so desperately for her to be loved and have true, equal friendships. I never wanted her to just be the “cute kid with Down syndrome” in class (although she is, in fact adorable) but to be able to truly connect and have lasting friendships. Of course I want her to be able to read, write, learn math and all that jazz, but being able to connect with others and communicate her feelings was probably the most important thing to us. We decided very early on as a family that we were going to focus on that and do our best to give her all the right opportunities to develop the social and emotional skills to develop these bonds and friendships. We “threw her into the mix” of life, so to speak, and we still just try to give her lots of experiences where she can blossom and grow her little personality and show us what she wants out of life. She has already squashed most of this fear just simply by being, well…Ruby. She is funny, compassionate, kind and so smart and has many true friendships!! She is so loved by so many because of all these amazing qualities, not because she has Down syndrome.
My hopes and dreams for her? It’s the same as Ella Mae, really. I want her to be able to go out and chase her dreams. Find her passion in life and feel like she is making an important contribution to society, whatever that may mean for her. And as much as it will hurt when this day comes for either of my girls…I want her to live an independent life. She is already such an independent, sassy little girl…I want her to feel that confidence and pride knowing she can do whatever she puts her mind to. I want her to find the love of her life and live happily ever after….sounds so simple, right? I know there will be lots of road blocks and things to overcome along this journey, but we are dedicated to giving her the tools, support and love to help her achieve her dreams in life, whatever that will be for her!! She is a lady that knows what she wants, that’s for sure, so I know she will find her own direction and path with time, and I am excited and honored to be a part of it all!

Miggy: Speaking of hopes and dreams, you started an amazing foundation called Ruby’s Rainbow that grants college scholarships to adults with Down syndrome! How did this get started? What has been the reaction and the results of Ruby’s Rainbow so far?

Liz: The second I held Ruby for that very first time I knew I wanted to the world to see what I saw in my daughter. After we got home from the NICU I went and checked out every book I could find in the library I could find about Down syndrome, but none of these books depicted this perfect, tiny little determined human that I was watching grow beside me. It was at that point that I really just decided to let her show me the way. When she was about six months old I turned to my hubby and said “I think I want to help someone with Down syndrome go to college” and that was that. We didn’t even really know if people with Down syndrome were going to college, but I believed in my heart that my own daughter was capable and wanted to help someone like her go for their dreams. My goal that first year was simply ONE $2k scholarship, and we were able to give out ELEVEN that year! In the past seven years since Ruby’s birth we have been able grant $640,000 to over 200 people rockin’ that extra chromosome going for their dreams of higher education and independence! It’s more than I could have ever dreamed and it has exceeded my every expectation, but that is no surprise since Ruby has done the same since the day she was born! Another huge part of what we do is the awareness piece. Through sharing the stories of our recipients and Ruby’s progress and hilariousness we are trying to show the world just how amazing and capable people with Down syndrome are to help raise the expectations and make the world a more inclusive place for everyone!

Miggy: Now for a lighter question, I’m a big believer in seeing the humor in life and learning to laugh, so have you ever had any funny conversations/moments you never imagined due to your special needs situations?

Liz: Oh my goodness our house is always filled with laughter! Whether it’s hearing our farting toilet paper roll from across the house or Ruby calling me and her daddy “Babe”…it’s never a dull moment. This isn’t particularly funny, but I do love how both my girls take so much pride in Ruby’s Rainbow and what we are doing. They huddle around my computer during application season and are so invested in each and every person. Ruby will proudly say “My Recipient” when we are awarding a scholarship or she sees me post something and it could not make my heart any happier!

Miggy: If you could say something to the mom who just starting on this journey of Down syndrome, what would you say? What would you say to yourself if you could go back in time? To take this a little further, what would you want doctors to say when telling their patients that their child has Down syndrome?

Liz: One of my favorite emails or messages are from new moms who may have been crying tears of fear and sorrow…and then they find Ruby’s Rainbow and see all these amazing faces of people with Down syndrome out there living their dreams and doing amazing things…and suddenly those fears turn into excitement and joy for the future! I truly believe that casting that vision (whatever it may be) and dreaming big right along side them and just expecting that they WILL DO all these things can completely change the path of that child. I would say to a new mom: You do not have to sweep those dreams you had for your child before the diagnosis under the rug. They will surprise and amaze you at every turn…so keep loving and dreaming and giving them all the opportunities you can to help them be the best lil’ version of themselves they can be. If I could go back to that day in the hospital I would really just tell myself to stop worrying. Stop worrying if people are going to love her and treat her with respect, stop worrying if she will ever tell you what is going on in that lil’ head of hers (spoiler alert…some days I actually have to tell her to zip it–haha!), stop worrying about the future and just focus on the now. Right here and right now you have this perfect li’ lady who loves you with a love so authentic, and she will do her best. And she will get there…in her own time.

What would I want doctors to say? CONGRATS!!! You have this perfect little baby, who also has a tiny little extra chromosome. I know it may seems scary at first, but your child will do amazing things!! There are so many more opportunities (hello college!) and resources available then ever before (doctor hands over positive resources). The end.

Miggy: Lastly, what is the biggest lesson you’ve learned since becoming Ruby’s mom?

Liz: Ruby works so incredibly hard everyday to be the best lil’ version of herself she can be. We work really hard along side her to give her the right encouragement, support and opportunity to shine, but she is on her own timeline…and that’s ok! She has taught me that successes and beauty look different for everyone, and to celebrate even the tiniest of accomplishments. She has also taught me to slow down and really live more in the moment. I have learned to relax a little bit more in my own skin, because I see how confident and authentic she is every single day. She will always say “I love mommy, I love Daddy, I love Ella….and I love ME too.”

And don’t worry Ruby Doobs…YOU ARE LOVED TOO. By so, so many.