Wednesday, July 30, 2014

My Daughter With Down Syndrome Has Changed Me

When Ellie was born I knew my life was forever changed. I felt it, not in my heart but in the pit of my stomach. It was a fear that I would not be the same person from that day forward. A fear that my life would be filled with doctor's appointments, therapies, and research. That my duties as mother to my two older boys would be sacrificed. I worried for how my marriage would suffer because of this new journey I was about to take. I loved this tiny being with my whole soul but I worried that fighting for her would take away a part of who I was.

Those feelings in the pit of my stomach have since faded. The fear has grown into hope, and now I feel it in my heart. I now have a full, grateful, bursting with joy heart and it's hard for me to even put into words. I would like to try and share with you how Ellie has changed me. She has changed me in ways I never could have imagined.

1. Stopping to Smell the Roses. I remember wishing away the days with my oldest son Will, pushing him to get to that next milestone and stressing that he wasn't getting there fast enough. With Luke it got a little better, as my second baby I found that life was flying by faster than I expected. I wanted to soak in every phase with Luke. Ellie has helped me back up the truck, slow down, and enjoy every minute. She takes longer to accomplish her milestones and being the third child I can't tell you how much I'm enjoying this time with her. I remember feeling offended when someone said "you are lucky because you will have a baby longer", but I get that now. And to be honest at 18 months she's already moving into toddler-hood and has the sassy attitude to go with it!

2. Human Rights. I have never in my life felt so passionate before for all people; race, religion, sexual orientation or being differently abled, I will fight for the equality that every person on this earth deserves. I lived in a naive bubble before Ellie, I cared about human rights but never at this level.  I am now aware. How lucky am I to have a daughter who at 18 months old has already taught me this important life lesson.

3. Nutrition. As silly as this one sounds, I have to bring it up. I have learned so much about nutrition because of Ellie. I have learned that some children with Down syndrome do better when they are dairy free, or gluten free. These are ways of eating that I never would have explored if it weren't for her. I know more about supplementation as well and am even taking some of the vitamins myself. I am excited to learn more about healthy eating as Ellie grows up, and the rest of our family will benefit from it as well. 

4. Understanding Work/Life Balance. I am a career mom, and with being a career mom comes a lot of working mom's guilt. Once Ellie arrived and rounded out our family of five, I was able to take a step back and look at what is important. "Things" are not as important to me now. I am not feeling the constant push to rise to the top of the corporate ladder. It is an amazing feeling to get my priorities in order! If Ellie wasn't here I don't know if that would have happened. She took me down a notch and brought me back to reality. I am lucky to have an amazing boss who gets it, to work for a company that is flexible and understanding, and to have the security in knowing I'm building toward a future for my family.

5. The Importance of Connections and Support. Where would I be if it weren't for the internet? I have mentioned this before, but the connection I feel to other families who have children with Down syndrome is magical. There is no better way to put it. Having the support of other moms gives me such reassurance for Ellie's future. I have these women to lean on for the rest of my life. We will have each other's backs through it all, the hard times, the joyful times, the scream at the sky and cry times. I make new connections constantly and when you are on the journey of raising a child with Down syndrome, to know you are never alone is so comforting.
*If you are pregnant with a child with Down syndrome or have a child with Down syndrome birth to age three and you are not in a Rockin' Mom's (or Dad's) group, please go to our DSDN link and click"connect". You won't regret it, I promise!

6. Being Different Is Awesome. This to me is the most important lesson Ellie has taught me. As soon as Ellie was born we talked to the boys about Down syndrome and what it meant. Even before she was in our lives we always reiterated that "if everyone in the world was the same, what a boring place that would be!"  Because kids ask questions and they notice people who aren't like them, and even say awkward things out loud sometimes. I'll never forget the day Will asked me "mommy what is wrong with Uncle Danny?" I took a deep breath and started to try to explain his story and why he has an intellectual disability. I barely got out a "Well honey.." when Will said "He's just so shaky!" He wasn't even asking about his disability. He didn't see it at all as a matter of fact, he was noticing how my brother shakes. It brought a huge smile to my face and I was able to explain that he is shaky because of the medicine he is on. 

I hear my boys educating their friends about Down syndrome. I hear them being more accepting and loving because of their sister. Now if we are out and about and they see someone who is differently abled, they will wave and say hello. This to me is the biggest part of how Ellie has changed not only me but all of us. Our hearts are bigger because of her. I also see her changing the hearts of our friends and family.

Yes Ellie, you have sure changed your mama. And I am so glad you have. You are the little gift my soul needed. Thank you for opening my eyes to some of the biggest lessons I will ever learn in this lifetime. I am eternally grateful that you are mine. I can't wait to see what else you can teach me.


  1. I feel the same way about Liam! All those scary thoughts in the hospital disappeared quickly. He really enriched our lives!

  2. Beautiful post! Personal, insightful, inspirational, and most of all, authentic and true.

    1. Thank you Ryan, I appreciate your kind words more than you know :)