Enjoying the Small Things

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Leaves from Home

October 28, 2016 By Kelle

In the open woods behind our house, nestled between palmettos and tall slash pines, is a pile of leaves in a kaleidoscope of fall colors that stands out against the green scene we’re used to in October.

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The pile is mostly flattened now, leaves tangled in dried needles, but the colors are still there, even two days after we scattered them. They’re foreign to Florida’s landscape, but they’re home to me. And every October since Lainey was a baby, we wait for them to arrive–delivered to our doorstep from the UPS man. I check the return address, see my cousin’s name and the promise of what’s inside with two little letters: MI. Michigan made it to my babies once again in a box that holds tradition and memories and family, and things I want them to know–the smell of a northern fall, the way one small Maple leaf can hold sixteen different colors, the happiness that comes from getting rained on by freckled yellow leaves that flutter to the ground in slow motion.

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My kids are all old enough to have enough of these October memories stashed that they know the drill. They run to find “fall clothes” and meet me outside. We walk together to the woods and huddle around the box while I carefully open it. I pull the tape off the sealed bag, give it a shake and watch it expand with leaves awakening from their postal journey.

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“Oh my goodness,” I say. “I think this is the best box yet. Look at all those colors.”

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And then the moment they’ve been waiting for–I tip the bag upside down and release hundreds of vivid presents onto the ground.

“Ahhhh–smell that? That’s heaven.”

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“Have at it! Jump in! Throw them! Make it rain!”

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And I watch, in pure contentment, as my kids experience a sliver of happiness from my childhood home.

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It’s officially fall.

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We have a big Halloween party tonight and a sleepover that will, no doubt, keep us up late. So another cup of coffee is in order, and I may just take it to the woods for one more inhale of that heavenly pile of home. They’ll be fading fast.

Happy Friday. Happy Fall.

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Filed Under: Uncategorized 14 Comments

If You Could Take Her Down Syndrome Away, Would You?

October 26, 2016 By Kelle

I took the kids downtown this past weekend, an impromptu decision brought on by taking the dogs out early Sunday morning to be met by what us Florida folk call “a chill”–a drop in temps I’ll liberally define as “comparable to a northern fall.” Regardless, it was the kind of weather that begged us to be outside, so I dress the kids in long sleeves, throw Dash’s trike in the trunk, text Heidi with an invite to meet us and head south toward the fancy part of town we go to window shop and play at the good park.

“I’m doing this every weekend,” I always tell myself at the sight of so many people out and about, enjoying Fifth Avenue–mostly spry well-dressed rich people walking their dogs, but there are a few regular folk who help us blend in–that is, if you don’t count Dash ramming his tricycle into the front window displays of stores we have no business walking into. Or Nella, investigating the nether regions of street statues to see if their privates are showing.

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But the dogs–so many dogs, and my kids want to stop and make friends with every one of them.

What’s his name?
Is he nice?
Can we pet him?

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We pet Boomer and Kiki and Reba while their owners wait patiently and smile at my kids.

Heidi talks to a woman who’s sitting in the sunshine, enjoying a coffee. I’m distracted, making sure Dash is gentle with the dog he’s petting, but look up when Heidi calls me. “Kelle!” She smiles. “She has a son with Down syndrome,” she says, pointing to the older woman who’s intently watching Nella play.

“You do?” I say, “How old is he?”

There’s a pause that prepares me for what I know follows. “He passed away,” she answers. “Thirty-two years ago.”

“I’m sorry,” I say. “I bet you miss him every day.”

We talk a little bit about how things have changed for people with Down syndrome these past several years before I gather the kids to keep walking, and then Heidi grabs my arm.

“I’m sorry, Kell. Is that hard to hear?” she asks.

“I’m used to it,” I smile. “I guess I’m just thankful that so much has changed.”

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For one, how did word travel thirty-two years ago? How could a mother tell the world the secret story she discovered when she took that baby home? That the joy and love her child radiated and his will to learn and contribute was far more powerful than the narrative she had been told to believe about him. How could she spread word of the powers of human connection she was discovering–the way she saw things differently, the way all her investments in a life of comfort and convenience had crumbled only to give way to something new she didn’t realize existed–an understanding that allowed her to love better, fight harder, and appreciate people for every ounce of spirit that beams from their very existence.

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Do you know what the life expectancy was for a person with Down syndrome in 1983? 25.
And today? 60, with many people with Down syndrome living into their 70s. And while much of this is due to the end of inhumanely institutionalizing individuals, I believe so many of the actions that have changed the outlooks for our children’s future are due to the power of story–moms and dads and grandmas and grandpas, brothers and sisters and friends shouting to the world, “She is worthy, she is smart, she is beautiful, she is happy, she is funny, she is capable, and you know what? She’s a lot like your kid.” Now that we have more tools to be heard, seen and to tell our stories, the world is expanding.

This month, for Down Syndrome Awareness month, I’ve read countless stories from families of a child with Down syndrome–how much these kids are loved, how much their families can’t imagine life without them, how they believe in them, advocate for them and continue to discover–alongside their children–what life is truly about. Based on the algorithms of who I follow on Instagram, my entire Explore page is full of babies of Down syndrome, so I frequently pop in to see these new families beginning. Behind the rawness of the uncertainty of those first few months, the love is palpable, and that’s the most powerful foundation a story can have.

Last month I spoke at the annual conference for the Utah Down Syndrome Foundation, the theme of which celebrated the power of storytelling in advocacy. Yes, things have changed and yes, raising a child with Down syndrome in 2016 is so much easier than it was in 1983, but there’s still an outdated narrative that our stories need to flood out–that this isn’t some sad thing that happened to us that burdens our everyday life. Someone in the crowd raised her hand and asked a question I hadn’t been asked in a long time–“If you could take her Down syndrome away, would you?”

It’s a hard question to answer. We try and separate Down syndrome from who Nella is and often compare her challenges to that of asthma or allergies in that it’s just something she has, not something she is. And yet if you asked any mama if they would take away asthma from their child, I’m sure they’d jump at the chance. No one likes to see their child go through physical struggles, especially ones that affect the opportunities they’re presented with.

But I can’t imagine Nella without Down syndrome, and in a way it is part of who she is. There’s a love, a vibrancy, a compassion, an awareness of people’s need to be seen, and a determination to take in the world that is just…well, Nella, and I don’t know how much of it may be wrapped up in the mystery of that extra chromosome.

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Would I change her? Not her spirit, not her face, not her will, not her heart. Not the way she’s taught me to slow down and stop expecting life to roll out exactly how I planned. Not her crescent moon eyes that squint into tiny slits every time she smiles or the way, when her hand is in mine, I don’t worry so much about tomorrow because this moment right now demands all the emotion I can muster…and that’s happiness. She exudes it. So I will attempt to change what I can–the world around her. To value her, offer opportunities, expand its definition of beauty and success, and to celebrate the many things that make us different.

As for quality of life, I’ve got six years on this now. Our cuddly baby with the big blue eyes and milky skin grew into a girl, and we entered realms I used to worry about–public education, IEP meetings, bigger social settings and opportunities where her challenges are more prevalent and less cushioned by the bliss that is babyhood. But you know what? Life continues to get more beautiful, stretching my perspective, demanding growth and yet, without fail, offering more–more beauty, more love.

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I am so grateful to be living this story as her mom in an age where I can watch, listen and learn from the many others who share it with us.

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If you haven’t seen these, three online mama friends shared their stories in beautiful ways this month, and they made some incredible impact in the media: Amanda Booth and her little Micah, Oakley Peterson’s video of Welles’ story and little Sofia, self advocating like a boss. Your voice, your stories…the world needs them. It’s the most powerful advocacy tool we possess.

Happy Down Syndrome Awareness Month.

Filed Under: Down Syndrome, Uncategorized 21 Comments

Enjoying: Just a Little Attention

October 20, 2016 By Kelle

This post is sponsored by Born Shoes as part an ongoing partnership to highlight their fall collection and wave my fall freak flag.

I started a new skincare regimen recently, and I’m all in, convinced a new wholehearted approach to healthy skin will somehow up my “Life is Grand” meter but also subconsciously aware that life doesn’t suddenly get better with a great shampoo/self-help book/new diet/cute sweater/good haircut/D.I.Y. project (or does it? ;o). So I fall into a healthy medium while I smear the green night cream onto my last night, hopeful with the “dewy/younger-looking” promise the bottle gives yet aware of what’s really happening here. Five days in, and I wonder–is it really making my skin get better like I imagine, or is part of the placebo effect? A shift in my brain after creating time for myself at the end of the day that includes this lovely ritual of opening the little bottles lined up on my bathroom counter, washing away the grime of a long day and giving my skin some much-needed attention with creams and cotton balls and a pretty stack of washcloths I arranged for this new routine. Sure, hyaluronic acid and sea kelp might actually have some beneficial effects for my skin, but it’s more about the space I made for the routine that makes me feel like my skin is better.

Sometimes, it’s simply a little attention neglected areas of our lives need to make them better–not a complete overhaul, not a new face, not an expensive program that promises to fix all your problems.

It’s why 1 run can make you feel like your jeans fit better.
Or 1 tough conversation with your spouse can make you feel like your marriage is improved.
Why 1 trip to the ice cream store with your kid who needed some love can switch “I’m failing” to “I’m winning.”
Or 1 coffee date with a friend can suddenly open your world from “I’m going to die in this minivan, driving kids to various outings” to “The world is so full of people who make my life rich!”

How do you do it all? I don’t. I just listen for areas of my life that feel a little dried out and give them some attention, one at a time. Sometimes that’s as simple as a new sweater that makes me happy, a book that inspires me, or an evening ritual in my bathroom that gives love to thirsty skin. And sometimes it’s something richer–a moment on the couch with three little bodies tangled around me, reading Skippyjon Jones for the fifth time, fully aware of my “Life is Grand” meter creeping up, up, up. 

Enjoying…

Listening to the whispers of “I need a little attention” this week.

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Giving Dash a proper paper airplane lesson in my Born Panarea boots that whisper “Tis the season to frolic in the falling leaves even if there aren’t any.”

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Running outside once the lightning has passed to splash in puddles…

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A room that’s staying clean thanks to a new laundry basket…

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Sunday snuggles…

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Watching her self-love…

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Bubble Baths. Always a savior, despite the hilarious ridicule Jessi Klein makes of women who love baths (“So Cathy Cartoonish”, “Yay, I’m submerged in a watery trough!”).

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Seasonal traditions that involve getting messy…

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Slivers of light…

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Slow and beautiful metamorphosis…

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Filed Under: Uncategorized 7 Comments

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