Down syndrome awareness month: A tribute to my Rockin’ babe

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October is Down syndrome awareness month.

How each of us chooses to bring awareness to something is probably different for each individual. That’s what makes a month dedicated to Down syndrome so exciting. I get to see the mommas in our community doing ALL the things. For me though, awareness means showing the world that my child is worthy of all the things that any other child is worthy of. It means being an advocate for her. It means celebrating her sassy personality. It means taking a few extra minutes to wonder how I got so lucky.

When I was younger and I envisioned myself as a mother I always thought I would be your average, run of the mill mom. I would make it through the baby stage, tackle the teenage years, and then kick them to the curb when they were adults to face the world head-on. Then I would sit and marvel at how I raised wonderful children and enjoy the empty nest years. You know, the American dream. We define success with objects and money not by treating other humans with compassion and kindness.

Funny how life rarely turns out how we envisioned. After Amelia was born, I had to rewire my brain on what her life would look like (mine too!). When we are faced with diagnoses for our children, we often hear ‘you have to grieve the loss of the child that you thought you were going to have to begin to understand the child that you do have’. It’s 100 percent true and once you get to acceptance that means your life is going to start getting good.

One thing that I have learned about being a special needs mom is that you, as the parent, have the choice to celebrate the child or drown in your own negative thoughts about where your child should be.

That choice is not always easy. We all know about comparison and how it will suck the life out of anyone quicky. Placing values on milestones is not the way to live. I say that with the idea that in our house we will strive to make Amelia the best that she can be. Compassion, kindness, and hard work are values that should be at the top of the list for Amelia. I want to do that with all of my children.

Amelia has taught me so much in her short 4 years of life. She makes me want to be a better person. She demands that I be patient. Her nature is to see the good in people. She gives the best hugs and kisses. She is so loving. She is quick to run to someone if they are hurt or crying. I think we all could learn a few things from that sweet babe.

There is a well-known poem that talks about being a special needs mom is kind of like planning a trip to Italy. Sounds amazing and beautiful, right? You do all the prep work for this trip. Save money, pack, plan details, get flights. Then the trip happens and somehow when the plane lands you end up in Holland. You’re stuck in Holland with no way to get out. Slowly you learn that Holland is not bad. Yes, it’s different. Yes, it’s not what you expected. But, it becomes beautiful and wonderful. You then realize that Holland is just where you need to be.

Being Amelia’s mom is more joy than sadness. More reward than disappointment. More laughing than crying. More ups than downs! There is something so gratifying watching Amelia do stuff that she has worked so hard at. So, Happy Down syndrome awareness month everyone. I hope everyone gets the privilege of meeting and knowing someone with Down syndrome. They truly make your life better.

For more Down syndrome fun follow me on IG @lovinonamelia

 

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