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Why I’m Not Afraid of the Chaos of Life With Down Syndrome

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I confess I’m somewhat over stories about when a diagnosis of Down syndrome is revealed. I get it, it’s the moment when some of us are thrust into a whole new world of special needs parenting, but regardless of whether the needs of the child are special or typical, as parents, we signed up for a lifetime. For that reason, I’m going to try and tell a story that’s about more than a just a moment in time.

The diagnosis of Down syndrome became official three days after our second son was born. He had quite a bit of blonde hair for a newborn, and it always seemed to stand on end. I joked that he must be charged with static electricity or something, and we nicknamed him “The Lightning Kid.” “Lightning” became my internal shorthand for any and all things that were magical or special about him, and I confess that includes Down syndrome — even though I argue against the stereotype of people with Down syndrome as magical, angelic or perpetually happy.

young boy in bathroom with blonde hair
Axel’s son, “The Lightning Kid”

The difference was merely a love of superheroes and magic, so if a nickname (or code name) could give us the courage and ability to handle the adversity of a special needs life, we were going to use it.

The “Lightning Kid” nickname stuck, and at sometime in the first two years of his life, we heard the song “Lightning Bolt” by Jake Bugg. I immediately dubbed it my son’s theme song without much thought beyond the fact that it had “lightning” in the title, and it was a boppy little tune we liked to play loud and dance to. It stayed in our music collection, but it was nearly three years later when I really paid attention to the lyrics.

Sirens of an ambulance comes howling

Right through the center of town and

No one blinks an eye

And I look up to the sky in the path of a lightning bolt

Met her as the angels parted for her

But she only brought me torture

But that’s what happens

When it’s you who’s standing in the path of a lightning bolt

The singer describes the random happenstances of life as being in the path of lightning bolt. You could be in an accident, you could fall in love. One of the ways to get right with yourself after receiving a special needs diagnosis is to realize what hasn’t been promised to you. You can look back on the whole process of starting a family and realize how much is beyond your control: When will you get pregnant? Will it be a boy or a girl? When will the baby arrive? And, once it does, whether your child has special needs or not, the path of their life and their character and personality are subject to a lot of chance, too.

Fortune, people talking all about fortune

Do you make it or does it just call you

In the blinking of an eye

Just another passerby in the path of a lightning bolt

Sounds scary, doesn’t it? It’s hard to confront the idea of so much chaos and randomness infecting our lives. For some, the idea of a grand, divine master plan that is beyond human fathoming is the way to get comfortable with it. Whether you believe in such a higher power or not, we need to acknowledge that random chance brings joy, too. You don’t know how your kids are going to turn out, and you don’t know which of their characteristics you’re going to fall in love with most — a giggle, a cackle, a smile, a song. If you think about the biggest laughs you’ve had in your life, they probably were triggered by something random and unexpected, and some of these become the inside jokes of families or circles of friends for ages. The path your child will take (if you’re lucky enough to have any children when you want them) is not promised to you, nor will it ever be for anyone.

Everyone I see just wants to walk with gritted teeth

But I just stand by and I wait my time

They say you gotta toe the line, they want the water not the wine

But when I see the signs I jump on that lightning bolt

People think they want the water, not the wine. Water sustains, we need it to survive, and we need it every day. It is also tasteless. The water represents the security and predictability that we need to know that our lives will continue. Wine is an acquired taste, it isn’t appropriate at every occasion, it can turn to sour vinegar, and too much of it is bad for us. In this case, it also symbolizes why we get up in the morning, and all things that make life worth living – for many, wine is used to celebrate.

Our family life is chaotic at times, but we did want adventure. I’ve heard it said that life isn’t about weathering storms, but learning to dance in the rain — and I think becoming a special needs family has begun to teach us that, in fact, we don’t just learn to dance in the rain, but also ride the lightning.

Follow this journey on The Lightning Kid.

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Originally published: February 21, 2016
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