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, loves to run away. 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. Because of that, Willow often doesn’t understand the difference between what is safe, what is dangerous and what is deadly.
Elopement, as crazy as it sounds, is a scary reality for many parents and caregivers of individuals with Down syndrome, but not everyone struggles with it. 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.
Sounds like prison.
I guess this is the point where I should be thankful we don’t invite people over much. Well, I guess there was that one time we invited the entire neighborhood over to our house….
It was 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 decided to take 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 2 flights of stairs to get there. The bad news is, my neighbors now know what a freak I can be under stress. Whatever. At least the root beer floats were yummy.
I feel like this whole elopement thing is leading me into isolation. It’s like the locks and alarms on our doors aren’t just for Willow. They’re keeping her in while making me want to shut out the world.
If I’m not dying of embarrassment, like the night of the neighborhood party, then I’m holding my anger or tongue or tears because of something someone said about Willow’s quick little legs. 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. If there was something I could do to keep my child safe I would do it.
I am doing it.
I actually got mad at my husband the other week for telling his co-workers about the measures we’ve taken to keep Willow safe at night, to prevent her from wandering out of her bedroom. I told him I was afraid someone was going to misunderstand and question our love for our daughter.
How could anybody….
Willow is what keeps me awake at night. She is the reason I scream like a crazy person in front of a neighborhood of people. She is the reason I choose to live in a house, turned prison. She’s what keeps me running, no matter how much I feel like giving up some days.
And she’s the reason I’ll keep going out that door… even though those locks make it so easy to stay inside.
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.
What is she thinking?
What am I thinking?
I cannot let perceived judgement stop me from going out that door. I can’t let it stop me from talking to people. I can’t stop my husband from sharing our struggles with his co-workers.
I can’t run away and chase my daughter at the same time.
She needs me to fight for her. She needs me to show people the hard parts of this journey so they don’t go on thinking it’s all rainbows and unicorns and smiles 24/7. 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…