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    Hi, I’m Krista.

    Strategic communicator and storyteller.

    I am the wife of a very talented musician who takes me around the world in pursuit of excellence. Mama to Jakob, Audrey and Ella, who just happens to have Down Syndrome.
    And an aspiring disciple of Jesus, defender of the oppressed, writer, graphic designer and photographer.

    I write and speak on navigating through the fog of life…you know, when things don’t go exactly as planned and am fuelled by a passion to amplify the voices of those on the margins…
    oh, and coffee…lots of coffee.

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World Down Syndrome Day

March 22, 2016

Yesterday was World Down Syndrome Day. I wanted to write a post but time escaped me. And my thoughts escaped me. I wanted to do it justice. I wanted my words to somehow transform people’s minds into knowing what I know. What do I know?

A couple of weeks ago, my husband’s mom went into hospital for a routine surgery to remove part of her bowel. She had diverticulitis and the pain had tormented her for months previous. Of course, for those months, they didn’t know what it was. Anyway, after she had the operation, she got an infection, as is often the case with this type of surgery. Three weeks later, her body is still riddled with infection, she is intubated and barely responding. I keep thinking, I wonder if they had any idea, if they ever thought that three weeks later, she would still be in ICU precariously hanging onto life. Of course not.

 But life rarely goes as planned.

Moments after Ella was born, I looked into her big black eyes and I knew. And a thick black cloud settled over my head and I could never look at her with the purity that comes right after birth ever again. I look back at pictures of her and of me in the days that followed her birth. My eyes are red and puffy and there is fear.

Because the unknown is so incredibly scary.

Then I took a baby step because, honestly, I couldn’t go back and she needed me to move forward. I recall, just now, how Ben and I would say that to each other. One step at a time. One day at a time. I am sure that is how Ben’s dad feels because what more can you do? We don’t have crystal balls that show us what our future holds. We can’t know where the rough patches will hold us back, or the joy that will propel us forward. Ben’s mom and dad are still at the beginning of this chapter in their journey and it is hard to know how to move forward. And I am not saying that the two situations are any more similar than that they share a common fear that is born when things don’t go as planned.

When Ella was born, people would come up to me in the post office and start weeping. “I’m sorry,” they would say. Their fear would cause us to second guess our celebration and I guess I just tell you that because, in a way, that is how I feel. How can I write about celebrating World Down Syndrome Day, how can I write about anything, when this black cloud lingers?

Well, I can move forward with hope, which is exactly what we had to do with Ella and while there are times when the same fear, (fear of the unknown), still creeps up, I can confidently say that I no longer fear Down Syndrome and the fear only comes from not knowing the future, but then again, how can we know anyone’s future – Ella’s, Jakob’s, Audrey’s or even my own?

Down Syndrome is what makes Ella who she is – a beautiful, vivacious and charismatic little girl. She does not let society’s expectations of her keep her from being who she is. Today, I watched as she helped her friend put on her snow pants and zip then up. Thankfully, her friend is patient enough to allow Ella to do this. But this is who Ella is. When I asked Jakob about things that Ella was good at, he said, “making friends”. She is empathetic and kind. She makes sure to say hello to all her friends when she goes into school and watches carefully as they all prepare to leave. She is a good big sister and is a big goof. She loves to make people laugh.

Now you tell me, what is so scary about that?

Friends, Down Syndrome was not in Ben and my plans, but it was just as God intended. That is why we celebrate World Down Syndrome Day on the 21st day of the 3rd month of the year.

I hope that through Ella, you might see Down Syndrome a little differently and if you do, please tell me. I love it when I hear that Ella has inspired someone and so does she.

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Krista Ewert

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Four Reasons You Don’t See Pictures of Older Kids With Down Syndrome
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5 Comments


aneta
March 22, 2016 at 9:54 pm
Reply

I hope this doesn’t make me sound like a monster but I am going g to be honest. I never thought I could handle a child with downs syndrome because of the cloud that hands over, the stigma. I always worried and in the past few months I am seeing so many CAPABLE loving people with downs that all of my old fears and thought have vanished. Ella is beautiful and you are blessed to have her in your life.



    Krista Ewert
    March 22, 2016 at 10:06 pm
    Reply

    Thank you for your honesty Aneta. Before Ella I would have probably felt the same. I wish you could meet her – she seriously dispels all fears.

Sally Felkai
March 22, 2016 at 10:20 pm
Reply

Ella is such a gorgeous girl from a gorgeous (inside and out) family. Beautiful post Krista. I also love to read about her personality and notice that she is indeed her own person and more like her family than like other kids with an extra chromosome.



Erin
March 22, 2016 at 11:03 pm
Reply

I love that Emma seems to bring so much joy to so many people! Her smile is contagious. It makes me incredibly sad that people use to appologize to you, when from my point of view you just have a different gift. I’ve worked with many kids and young adults with Down syndrome and the experiences I’ve had make me smile, not cry! So thank you for sharing and showing people how awesome and capable your daughter is! ?



Kmarie
March 23, 2016 at 11:25 am
Reply

Love Ella. Love that you celebrate her. Love that you celebrate beauty.

I don’t know if you got my post on how to help families in ICU? But you are welcome to pass it on. I also made some edits. We have not seen mom since Sunday so depending on what happens today we will go up either tomorrow or hopefully friday. One day at a time is a great general philosophy for life in general but especially in these moments:) xo



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  • About Me

    Hi, I’m Krista.

    Strategic communicator and storyteller.

    I am the wife of a very talented musician who takes me around the world in pursuit of excellence. Mama to Jakob, Audrey and Ella, who just happens to have Down Syndrome.
    And an aspiring disciple of Jesus, defender of the oppressed, writer, graphic designer and photographer.

    I write and speak on navigating through the fog of life…you know, when things don’t go exactly as planned and am fuelled by a passion to amplify the voices of those on the margins…
    oh, and coffee…lots of coffee.

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