Ellie

This beautiful girl is two year-old Eloise, or Ellie. Today here mom, Catherine, shares her heart about these last two years with her sweet girl. You can find Catherine and Ellie on Instagram at  @myaandellie and on their family blog at adventuresofmyaandellie.wordpress.com.

When did you find out Ellie had Down syndrome?

We had our first ultrasound with Ellie when I was 12 weeks pregnant. At that ultrasound we were told that Ellie had a thick nuchal fold, a marker for Down Syndrome. We had opted out of prenatal testing. The afternoon of our ultrasound my family doctor called me into her office and told me what they had found. She discussed further testing with me. I had never thought about having a child with special needs, but I knew at that time I would never abort this baby, no matter what any test told me. I told this to my doctor and said, “well maybe a test would be nice so I can know for sure.” She looked at me, she is a close family friend, and asked why. Why would it be nice to know? I decided not to get testing and went home to talk with my family about the possibility of a child with special needs. My husband agreed, we would never abort. At the 20 week ultrasound no markers for Down Syndrome were found. Although Ellie was born with a heart defect it was not detected in any ultrasound. We admittedly were a bit relieved and continued the pregnancy thinking we were having a typical child, although there was something in the back of my head that told me this was not the case. When Ellie was born I remember two things from those first few moments, the fact that she didn’t cry when she was born and how loose she felt in my arms. Within minutes our midwife told us she had Down Syndrome and later that day we were told of her heart defect. I am so thankful that we didn’t know for sure during her pregnancy that she had Down Syndrome. I am an anxious person and my nerves would have taken over my need to have a happy pregnancy. Once she was born, and I held her in my arms, there was no doubt I loved her with every breath in my body. Her diagnosis felt insignificant when compared to this love. Seeing Down Syndrome and feeling it was more important to me than the visions of an anxious pregnant mother.

If you could go back to the days and weeks after first hearing her diagnosis, what would you tell yourself?

I wish I could give myself a hug and tell myself that everything is going to be okay. I wish I could say, “Its okay to cry because difference is hard, difference is not what you expected, but difference is not an end to anything.” I wish I could say that Ellie will bring joy you can’t even imagine. That she will teach you the power of a smile. That she will show you how to fight and how to live one day at a time. Difference seemed so hard, and I’m realizing that there is no set blueprint for a life, no set course, no perfect model of what your life is going to be. If I hadn’t been so focused on how I had envisioned my life to be, I think maybe that first day wouldn’t have been so hard, because now, two years later, my life is exactly how I want it to be.

What is one of Ellie’s favorite things to do?

Ellie loves to watch me run after her. She is a very sneaky baby and when she knows she is doing something mischievous, she thinks its the funniest thing in the world. Ellie is not quite ready to climb stairs without my supervision, but she will sneak to the stairs, stand on that first stair and laugh hysterically when she realizes I’m chasing after her.

What is the most wonderful part about knowing Ellie?

She is joy. Don’t get me wrong, Ellie is not always happy, but her happiness is so pure, so perfect, it glows from within her. Everyone who meets her falls in love. People at grocery stores can’t stop smiling at her, she causes strangers from across a room to come talk to us. The other day at physical therapy class, as we were leaving, Ellie approached a stranger and gave her a hug. She loves hugs but I’ve never seen her approach a stranger like that. The woman looked at me, with tears in her eyes, and told me that just made her day. This little girl is joy, in so many ways.

What is something you want everyone to know about Ellie?

Ellie is so much more than words on a hospital chart. She is so much more than a diagnosis. I remember when we first found out she had Down Syndrome things seemed so different. The life I had envisioned for my family and my children screamed different. But the thing I have realized is that difference is not a hindrance in our life. Ellie truly is more alike than different. She is a typical kid in so many ways. She is kind, loving, sneaky, she gets frustrated, she gets angry, and she laughs. Her laugh is the most amazing sound. She is doing everything I expected my child to do. Her relationship with her sister is exactly what I envisioned before I knew she had Down Syndrome, when I was dreaming of my kids before having them. Ellie is also the light of our home. When someone is sad, she has empathy well beyond her years and knows when someone needs love. When my husband comes home from work Ellie runs screaming to the door to give him a hug. In the morning, when Ellie wakes up, she starts laughing. I have never heard her cry when she wakes in the morning. She starts every day laughing.

 Click below to read all the stories from Down Syndrome Awareness Month!

This month, I’m participating in the Write 31 Days challenge with Crystal Stine. DaySpring.com is celebrating all of the amazing Write 31 Days readers who are supporting nearly 2,000 writers this October! To enter to win a $500 DaySpring shopping spree, just click on this link & follow the giveaway widget instructions. Good luck! And thank you for reading along during Down Syndrome Awareness Month!