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Why I Let My Daughter With Down Syndrome 'Struggle'

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My daughter, Willow, was born to change the world.

Little girl with Down syndrome smiling at camera holding red lollipop

Sadly, I often get in the way. I see her struggle, get left behind or worse, made fun of, and I rush to save her.

Willow has Down syndrome, and sometimes I forget she doesn’t need saving. She needs support. My support.

As a mother, I want to protect my babies. I want to shelter them from harm. I want to steer them away from struggle. These feelings have been with me since the minute I gave birth to my first child. They grew stronger when I gave birth to my last child, Willow. I guess you could say her extra chromosome made me extra protective.

Three siblings in the woods playing

Willow has gone through so much. Heart surgery, hernia surgery, a cancer scare and a bout of neutropenia. She also works so hard to do what others do so easily, like walk or talk. She’s a trooper. She’s a fighter. She’s worthy of respect.

Little girl with Down syndrome marveling at a bubble maker

Only, I know not everybody sees it that way. I see it. I hear it. I feel it.

Thankfully, Willow doesn’t. Yet. Almost 5 years old, her focus is on fun, not the faces around her. While my eyes are always looking out for Willow, hers are looking for adventure. As it should be.

She is a lover of life. I’m the fun police. Except, I don’t always recognize it. I consider myself protective, when really I’m overprotective.

Willow had always wanted to attend Vacation Bible School (VBS) like her older brother and sister. This year she was finally old enough. Still, I worried she wasn’t ready. I actually regretted turning in her registration form.

Willow had the time of her life.

VBS was a dream come true for my little girl. She loved everything about it, but mostly she loved being around others her age. She called everyone “friend.”

For me, the experience was quite different. Each night, I watched Willow’s heart fill with love, while mine silently broke. As her helper for the week, I watched her struggle to keep up during gym time, many times sitting on the sideline. I also heard several kids comment on Willow’s differences. One girl, pointing out Willow’s capped teeth, called her “weird.” Another child, noting Willow’s small size and lack of words, said he thought she was a baby and questioned why they were in the same class.

I know those children meant no harm, but every part of me wanted to whisk Willow away and hide her from any hurt.

Yet, I didn’t. I couldn’t. Willow was so happy!

She wasn’t hurting. I was.

Willow didn’t hear any of the comments I heard. Her smile was too loud! And gym time didn’t frustrate her like it did me. She was just happy to be in the game! She delighted in the excitement going on around her.

So, I tried to, too.

It was hard. I wanted Willow to participate, not just watch. I wanted her to connect with her peers. I wanted things to be different. And, I really wanted to leave.

But, who would that help?

That week at bible school, I fought my urge to protect, swallowed my sadness and borrowed some of my daughter’s joy. After all, she had a lot of it.

Willow can’t change the world if I shelter her from it. And, people will never get to know my daughter if they don’t spend time with her. So instead of sweeping her away from the sidelines, I joined her there. And, I kept pushing her to find her place in the game, while praying others would see she had something to contribute.

Little girl with own syndrome playing mini golf

As a mom, my urge is to protect, but sometimes I overprotect. Removing Willow from difficult situations only makes things more difficult. Everyone loses. Willow learns it’s OK to quit when things get hard and her peers learn that VBS isn’t for everyone. I can’t fight for inclusion if I’m the one excluding!

I need to share Willow with the world, not shelter her from it. That’s the only way to change people’s perceptions of Down syndrome. It’s also the only way Willow will learn how to navigate this world and eventually change it!

I also need to teach Willow how to respond in love, especially when it hurts. That’s the only way to calm the comments, fight the fears and hit back at the hate.

It’s hard raising a child with Down syndrome in a one-size-fits-all world. But, I can’t forget this child I’m raising has the ability to change things! She can take us from one-size-fits-all to fits all! She can and she will… with my support.

Willow isn’t afraid of this world, so I can’t be either. I can’t keep getting in the way! I need to fade, so Willow can shine and light the path for others to join her.

Little girl with Down syndrme wearing a graduation cap and a santa skirt while clapping her hands and smiling

Back of little girl with Down syndrome walking down a dirt road

A version of this story originally appeared on The Mighty Willow.

Originally published: September 25, 2018
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