7: Living Free-style

Living free-style

When special needs hit a family, there is a ripple effect, felt far and wide.  At first glance it is HARD to find positives in the whole thing. (If you live it, you know – the negatives hit HEAVY and fast on siblings, relatives, friends, friendships etc.)  But look hard enough, and you’ll find it – the rearranged beauty.


“Necessities” have fallen away in the wake of it all.  I pretty sure they didn’t pick their own clothes as infants, but it seems like it’s always been this way.  They choose their own eclectic ensembles 99.99% of the time.  (This was something born of necessity in days with hands tied with their brother’s needs.)

our family

Some days they aren’t allowed to take markers to their faces and make their own tattoos, and other days they are.  Some days they match perfectly, and other days…well…they look a mess.

There have been stares, but there have also been plenty of smiles and laughter.


I’m never quite sure what to call it.  Friends suggest “boho chic,” “imaginitive,” “original,” “self-assured,” “eclectic,” “collected (randomly),” “creative,” “hobonista,” “organized chaos” and their might be some other names out there that they are scared to say out loud. 🙂

I’ve sometimes called it #katestyle on social media (my 3-year-old is the most inventive at the moment).  Funny thing is, I just realized that when you search instagram, my girl – sporting rainbow pants, pj’s, and leopard skirt is right there next to Kate Middleton’s gorgeous photos.

2 very different Kate Styles. 🙂  

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At first there was a hump.  It took some time for my pride to adjust.

One day that the preschool director told me that,

“Kate could be mistaken for a hobo.”

Don’t get me wrong, I thought it was hilarious, but I do realize that it’s not always a plus to have your child look like there isn’t much TLC at home.  I do have a growing heart for the homeless, and I also realize that…

no one intentionally sends their child out into the world trying to make them look like they have no home.

…Not to mention the pressure out there – pressure to present your children, yourself, your vehicle in a way consistent with your income or that of your peers.

It’s an unseen riptide that no one sets out to create and few can escape.

It’s only now, 8 years later that I can look back and see that this thing, this disability that cut so deep, somehow managed to free me in this one little way.  I’m free to enjoy this wild style of theirs – to be uninhibited by the “public,” if only just a bit.

Only time will tell whether the girls will be a fashionistas or a fashion emergencies.  For now, I’m content that the “special” in our lives, that has tied my hands, has bred this free-style in my girls.  

I have wondered which way things would have gone without the “special.”  I’ve got my free-spirited side, but I don’t shy away from teaching my kids that structure and good habits are a part of life.  And ALSO, there is something fun in putting them in cute little outfits and bows…so I suppose that might have happened more.  Regardless of how it would have been – this is how it is.  As long as my girls pick out clothes within the bounds of modesty, they are free to choose.

Sometimes this means 3 shirts, shorts, jeans, a skirt and a dress, all on one kiddo, at the same time.

There is a beauty in this.  My girls are free to explore.   They’ll learn on their own, not through my nagging, that 5 layers aren’t really needed for summer, and that tank-tops don’t work for winter.  Does it really matter if they wear a head band backwards?

Backwards brings more smiles in some circles.

This came from the chaos: adult diapers, muscles that don’t cooperate, nose bleeds, meds and feeding tubes for my 8-year-old – all things that in and of themselves are not beautiful,


perhaps the chaos can create little bits of rough-hewn beauty in all of us.


I know I’m not alone here. There are millions of other kids out there sporting their own style.  I’m also not saying that this is the one right way.  It’s just what we happen to do and what works for our family…for now.

31 days rearranged beauty

3 thoughts on “7: Living Free-style

  1. Awesome….none else freaking gets it! You took with the punches and the high fives! Story of my life! Thanks for sharing your beautifully “rearranged” life putting light in a dark room for many special needs families!

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