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My Daughter With Down Syndrome Is an 'Eloper'

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When I hear the word “elopement,” I like to think of my parents. They ran off and got married on leap year day of 1968. That kind of elopement sounds fun and exciting. Unfortunately, the kind I’m dealing with these days is the exact opposite. In fact, it’s the stuff of nightmares, reoccurring ones.

My youngest daughter, Willow, is an eloper. Sometimes it starts as a game, other times she just gets distracted and wanders. At 4 1/2 years old, I understand curiosity and playfulness have a lot to do with it, but Willow’s wandering is different than that of  a typical toddler because of her extra chromosome. She has Down syndrome. Willow doesn’t seem to yet understand the difference between what is safe, what is dangerous and what could be deadly.

Elopement is a scary reality for many parents and caregivers of individuals with Down syndrome, (but not every child with Down syndrome elopes). From what I’ve read and heard, this issue will likely get better with time, but it will take a lot of work, patience and vigilance. In the meantime, I’ve been told I should invest in some good locks as well as alarms for all the windows and doors.

Last summer, being new to the area, we thought it would be fun to host a party out of our garage as a way of introducing ourselves and meeting our neighbors. We served root beer floats and put buckets of sidewalk chalk out for the kids.

Things were going great until my husband took his eyes off Willow for approximately 10 seconds. Seriously, that’s all it took.

It was dusk. We live a block away from a river. Our back yard is a small forest of trees. A black bear had been roaming our neighborhood at night all summer long. To say I freaked out when my husband told me he lost track of Willow is an understatement.

The good news is, Willow was safe. A neighbor found her trying to get in the door of the guest house above our garage. She had climbed two flights of stairs to get there. The bad news is, my neighbors now saw me under stress. Whatever. At least the root beer floats were yummy.

In order to protect Willow, I feel I have become isolated. I can’t leave the house without her trying to leave my side, so it’s usually inevitable that someone cracks a joke or offers advice on how to “solve my problem.”

Please know, I’ve tried different solutions. If there was something more I could do to keep my child safe, I would do it.

I am doing it.

I realize, as much as this elopement stuff sucks, I cannot let the exhaustion, embarrassment, ignorant comments or unwanted advice chase me into isolation. It’ll only make the problem worse.

If I don’t understand Willow’s wandering, how I can I expect others to?

This is the part of Down syndrome that scares me. It’s like my daughter thinks she’s invincible. Granted, she survived heart surgery, hernia surgery, a cancer scare and a bout of neutropenia. But still, the girl has got to understand we live in Minnesota. It’s also winter. Every attempt to get out the door is usually made without a jacket.

My daughter needs me to fight for her. She also needs me to keep walking out that door, with her, so the world can get to know her. Because, while things aren’t always easy, they are definitely worth it. She’s worth it.

So I’ll keep running after her.

Follow this journey at The Mighty Willow.

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Originally published: March 9, 2018
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