Our Down Syndrome Journey: It’s Only The Beginning

It’s not easy being a special needs parent, but I wouldn’t change it for the world. Down Syndrome is a wonderful, happy, and sometimes scary journey. Most other parents just don’t really understand what it’s like to be a special needs parent and that’s ok! So, I am going to share with you some of our ups, downs and in-betweens.

My sweet girl, Eleanor, is 3 and happens to have Down Syndrome. She isn’t a “Down Syndrome kid” or a “downs girl.” She is a person. She has feelings and personality. We want people to see her for the sweet and sassy girl she is, not just a diagnosis. She is sweet, goofy, loving, outgoing, funny and also gets upset when something doesn’t go her way, just like any other 3-year-old. We want people to know that she is more alike them than different. We love every bit of her and wouldn’t trade her for anyone else.

We did not know when Eleanor was born, that she has Down Syndrome. To be honest, it was a pretty big shock and I was not prepared. My husband, on the other hand, was amazing! Who knows what would have happened if he didn’t do and act the way he did because I was a WRECK! She is my third child, so I thought I was prepared for the postpartum emotional rollercoaster that was to come. NOPE, not this time! I cried A LOT for months after she was born. Not because she had Down Syndrome, but because I was pretty clueless about it all and that scared me. I constantly worried about her health and her future. What was she going to be able to do? Be able to drive? Live on her own? Get married? Have kids of her own? I was afraid that she wouldn’t make friends or get picked on by other kids. I was afraid that people would stare at her or make hateful comments. I just did not know what to expect and it was terrifying!

Her first two years were filled with doctor appointments (she had 5 doctors), surgery, and therapy sessions. She had a cardiac catheterization when she was just 4 months old, which was scary and completely nerve-wracking, but made it through like a champ. Needless to say, her first two years were pretty chaotic. Over that time, I was starting to learn more about Down Syndrome and what she was capable of doing. It is still sometimes hard to see other children her age (or younger) doing things that she is not yet able to do. It was heartbreaking to see my niece, who is 9 months younger, walk and talk before Eleanor could. I know that she WILL hit her milestones and do it at her own pace, but some days are just harder than others for me. But, when she does hit those milestones, it’s AMAZING! I can’t tell you how exciting it was to see her roll over, sit up on her own or crawl for the first time. When she started walking, I thought I was going to cry tears of joy because of my excitement and happiness for her achievement! It is such a big deal when she achieves a new task because she has to work so much harder to accomplish it than typical kids do. Physical and Occupational therapies were such a blessing!

As she gets older, it’s sometimes hard to tell what she can and cannot understand because she does not fully communicate. For example, at a recent Parents As Teachers session, the lady had six different color circles in front of Eleanor. Then, she asked Eleanor to pick up the pink circle and she did it. Okay, was that a fluke? Nope, she picked up all six colors when she was asked to do so. I felt awful because I had no idea that she knew any of her colors. Also, as she gets older, we get to see more and more of her personality. She loves everyone. She doesn’t care if they are a boy or girl, black or white, young or old, she loves all of them! She will play with anyone. She loves babies (real ones and dolls), dancing, giving hugs and kisses and just running around with other kids, especially her brothers. At this point, we still don’t know what she will be capable of in the future, but I can’t wait to see what she will accomplish.

I have learned that people are going to stare or ask questions, especially kids, its human nature! I welcome your questions! Ask away! All I ask is that you treat her like a person, like you would treat any other child. Down Syndrome does not define who she is. She is more alike than different.

  1. Having known your other two, I can’t imagine you would have any child that wasn’t awesome, goofy and a joy to be around! You’re awesome yourself and realize what things are most important.

    I work with kids with Autism. I cringe each time I hear “Autistic kids” in the media, etc. It’s part of who they are- not the only thing.

    Well done, Anna!

    1. Thank you, Janet!

  2. Your ability to adapt, embrace, and enjoy are evidence of the awesome Momma that you are.

    1. Thank you so much Taybia!

  3. I also love this blog. It is opening my eyes to what you, Anna, have gone through to help Eleanor become the beautiful, smart, fun-loving girl she is today. I love family gatherings when I am able to see her – she is pure sunshine and happiness.

    1. Thank you, Rosie!

  4. I love your blog Anna and it was written so well. When I first layer eyes on your Baby Girl, I Loved, her. She is Beautiful, smart and a Precious Little Angel and this family is Blessed to have her. I mean this from the bottom of my Heart !! 💖

    1. Thank you, Pam!

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