What I Learned From My Son's 'Ninja Ballet'

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My 11-year-old son Carter’s favorite thing to do is something he calls “swinging stuff” and that my husband, Brian, and I refer to as “ninja ballet.” It involves a plastic sword, light saber or stick, and lots of jumping, spinning and twirling (of both the stick and the boy himself).

Carter April 30 2014 (1) Carter, who suffered a prenatal brain injury and has mental illness and other disabilities as a result, is devout in his practice of this art. For at least four years, he’s spent many hours every week, sometimes several hours in a single day, working with his stick in the yard. He spins. He whirls. He shouts.

The whole thing is surprisingly graceful and fun to watch. In his imagination, he’s fighting battles like the ones in the movies and TV shows he likes (“Star Wars,” “Lord of the Rings,” “Ninjago”), but from my place in the dining room where I watch him through the sliders, it looks more like dancing than dueling.

I see him out there, toiling happily, working and puffing and struggling to master a new move he’s invented, and he is an artist of his own training and invention. “I can’t wait to go home and swing my stick,” he says sometimes after a day at school, and I imagine young Mozart saying after a day with math and history, “I can’t wait to go home and get to my piano.” He’s like Emily Dickinson, devoted to his art not for fame or admiration but because the art is its own reward.

Does that seem like too much? Maybe. Comparing a little boy playing in the yard with a broomstick to some of the greatest artists in history is a stretch, but Carter’s devotion is unassailable. Unless something changes in our culture, there aren’t going to be any TV shows that showcase his skills. He’s not going to get rich or famous because of it.

But… is his life not immeasurably better because he has art? Because he seeks to meet a challenge he has created for himself and is diligent in improving his form? Because he loses himself in something he loves without concern that the thing he loves is nothing most people would recognize?

He does this with almost no audience. Sometimes, he shows my husband or me or one of his grandparents what he can do. He took his stick to our church retreat and enjoyed showing a few people his moves. He doesn’t mind being watched, but he doesn’t do it for the purpose of performance or for any other purpose beyond the joy of the thing itself.

Whether we are stick swingers, word slingers, food composers, paint smearers, garden tenders, quilt builders or music makers, may we all find some of Carter’s perseverance and dedication in ourselves. Our lives, too, will be immeasurably better.

This post originally appeared on No Points for Style.

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Contestant With Special Needs Is ‘a Smashing Success’ on ‘Wheel of Fortune’

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On Wednesday night’s episode of “Wheel of Fortune,” everyone was on #TeamTrent.

That’s because Trenton “Trent” Girone, from Peoria, Ariz., completely stole the show. Girone is a 21-year-old man with Asperger’s and Tourette syndrome. He’s undergone nine brain surgeries and an open heart surgery, according to ABC. Since he was 2 years old, he’s been a “Wheel of Fortune” mega-fan.

Watch below as Girone appropriately solves the “A Smashing Success” puzzle and then shows off his “Wheel of Fortune” trivia knowledge. It’s no wonder he was trending on Twitter long  all night long.


In the end, Girone didn’t walk away with the big prize. But hey, winning isn’t everything.

“I want to thank all of the contestant staff for taking the time to help me, and would like to thank Pat Sajak for his assistance, as well,” Girone later wrote on the “Wheel of Fortune” website. “I have some physical challenges that they were aware of and they made sure I was safe and comfortable.”

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The Unusual Thank You Letter I Had to Write After My Daughter's Surgery

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It happens every time. Days of running on adrenaline, fear and worry… Too many Snickers than any one human should stuff down their hatch in 24 hours… The way my body physically aches while waiting to desperately hold her in my arms…

You would think by now, Pip’s fourth surgery, I would be better prepared to handle the stress and worry, know what to expect and — excuse my language — get my shite (since living in Ireland this is exclusively how I say this word now. Deal with it.) together.

But this time it was almost harder than the last simply because Pip is such a little person now. She could tell something was going on, wouldn’t let me put her down for a second without raising her arms up for me to hold her and kept nuzzling her neck deeply into mind.

mom kissing crying baby

 

This time I went just as crazy. Actually, if I’m being honest, maybe even a bit more so. Therefore I thought it would probably be a good idea to write a wee thank you letter to all those affected.

Dear World,

Thank you to my husband who knows me so well. He knows I’m totally opposite of those “I’m-too-stressed/sad/worried/etc.-to-eat-anything” gals. He knew bringing home a burrito the size of my upper arm the night before Pip’s surgery would be spot on –bad call, however, on the chipotle-burn-my-lips-off sauce. Please note that for her next surgery there, Chief.

Thank you to the Target lady who remained calm and kind even though I could tell you thought I was loco. Coming in 10 minutes before closing, panicking and then demanding to know why there was no warm onesies pajamas with feet anywhere in the store might have been a bit much — especially considering the entire store was stocked for summer. You didn’t know that all of a sudden I desperately felt like I needed to get Pip new pajamas for the hospital or that I cried all the way there and cried all the way back.

Thank you to the McDonald’s drive-thru dude who didn’t laugh when I had to make sure there was extra extra Big Mac sauce on the cheeseburger I absolutely needed after my cry and failed PJ mission at Target. Side note: Yes, I am a total binge-eater when stressed. I dare you to judge me.

Thank you to my carBig Girl, for once again letting me cry on your steering wheel, letting me howl like I needed to, knowing no one could hear me except you… I hope. And if that’s not the case, thank you to whomever heard me and chose to ignore me. Good call!

Thank you to the hundreds — sheesh, thousands — of people who took time to send me a message, comment or share a picture of Pip or send one up above to whomever you believe. Reading and seeing them before I went to “bed” (lie pointlessly while stalking/watching Pip sleep and begging God to keep her safe) really lifted me up and brought much needed strength.

Thank you to two strangers who have fallen in love with Pip and did something to show me how very sweet and kind the world can be, who took the time to make Pip a stunning cape and an adorable blanket for the hospital. It was above-and-beyond awesome.

baby with down syndrome crawling

 

Thank you to my wonderful, amazing boobs. Yep that’s right, I’m going there. Thank you for nursing Pip way back when, for getting her through heart failure and feeding tubes and for having that moment, the “last feed” at 3:30 am when it was just me and her.

Thank you to the lady at reception in the hospital at six-bloody-thirty in the morning for being cheerful and commenting on how cute Pip was. You even went as far as asking if you could give her a present and then gave her an adorable little bear. You don’t realize how that helped start a dreadful day, so thank you.

Thank you to the old man who pointed out that Pip only had one moccasin on in the waiting room and didn’t laugh out loud at the reason why. Getting her ready at 5 am in my mix of exhaustion and craziness, I needed her to wear a “lucky” outfit. So that of course meant two of my favorite shirts with the quotes, “Though she be but little she is fierce,” and, “All you need is Love.” Obviously, right? But then she also needed lucky star leggings and my absolute favorite moccasins but I could only find one. So with one we came.

baby with down syndrome sitting on the floor

 

Thank you to all the nurses who were extremely kind and fell in love with Pip like everyone does. Thank you for treating her gently and trusting my judgement in allowing me to put the drops in her eyes because her and I are use to me doing it. Thank you for caring and treating us like a momma and her babe and not just patients.

Thank you to the operating team who didn’t laugh when the anesthesiologist told me to talk or sing to Pip while they put her to sleep and all I could think to sing was bloody “Row Row Row Your Boat.” All I kept thinking was, “My God, you idiot, you couldn’t think of anything else, you gotta commit to this, the doc keeps telling you to keep singing so go for it, row that damn boat”.

Thank you to the nurse who held me while I had to catch my breath — kind of sob — after Pip was put out and I was led out of the operating room. And thank you to the stranger who caught me crying in a hallway and stopped to ask if I was OK.

mom holding baby in hospital

 

Thank you to the waiting room people. This time I wasn’t nearly as annoyed with everyone near me. This time I actually found comfort in other mommas’ scared smiles and small chit chat.

Thank you to whomever makes my favorite stress reliever, Snickers. The fact that before 8 am I was eating one, two, three — okay the number doesn’t matter but you get the point — you help me.

mom eating a snickers

 

Thank you over and over and over again to Pip’s eye doctor. She’s shown such professionalism, care and kindness Pip’s entire little life. I can’t imagine doing all that we have with Pip’s eyes without this woman.

Thank you to whomever designed the hospital so that the recovery room is a quick trot away. This being Pip’s 3rd surgery there, when they told me I could go see her I bolted and made myself at home. Having her back in my arms is a feeling like nothing else and one I truly can’t find words to describe. Or maybe it’s one I actually don’t want to try to describe. It’s such a sacred moment of sorts and the thoughts and gratefulness going through my head are kinda better left in my heart instead of in words.

mom holding baby before surgery

 

Thank you to God/Fate/Whomever for keeping my darling girl safe. One thing I’ve learned in all of this is learning to let go and let be. I have absolutely no control over things on surgery day and believing in something greater than me, the doctors or the procedure has helped. Believing that Pip is here for a reason and her time on earth is planned out as it should be kinda helps.

baby sleeping after surgery

 

And thank you of course to Pip for being the fighter you are, for showing me daily what strength means, what hope feels like and what it means to live life with such a purpose. With each surgery I am in awe of you and the people you are inspiring.

 

So another one under our belt and until the next one, big thanks, World, for all you did to keep me together.

smiling baby in crib

Love, T

P.S.  Just a few hours later, Pip was her funny little self again:


This post originally appeared on the Happy Soul Project.

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Shaq's Ignorant Instagram Blunder Ended With Positivity and a Reminder Never to Judge Disability

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“I’m more positive probably than I could ever be,” Jahmel Binion says in the FOX 2 video below, just days after basketball legend Shaquille O’Neal publicly mocked him on Instagram.

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Binion, a 23-year-old from Madison Heights, Mich., has ectodermal dysplasia, a rare genetic condition with symptoms like “reduced ability to sweat, missing teeth and fine sparse hair.”

Instead of lashing out against O’Neal, he responded with an anti-bullying Facebook page, “HUG DON’T JUDGE,” which gained more than 18,000 followers in less than a week.

“Please be respectful, be positive and share this with the world,” he writes on the page. “Time to make a difference.”

O’Neal deleted the photograph from Instagram and apologized for his ignorance on Twitter with a hashtag that stood out to us at The Mighty.


Hopefully, O’Neal’s ignorance and #AlwaysLearning apology will be a reminder to others to educate themselves before making a snap judgment about someone’s appearance. The National Foundation for Ectodermal Dysplasia has invited O’Neal to this year’s NFED National Family Conference in hopes of doing just that.

In the mean time, Binion is fighting hate with kindness. You can join his HUGS DON’T JUDGE Facebook group here.

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Hip-Hop Star Faces Cystic Fibrosis Head On

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When I ask Ryan Morrissette if it depresses him to have cystic fibrosis (CF), a genetic disease with an average life expectancy of about 40 years, the 19-year-old professional hip-hop dancer answers me matter-of-factly.

“No, not really,” he says. “I’ve always thought there’s no point in being sad about things you can’t change.”

Morrissette, from Maple Ridge, British Columbia, has been dancing since he was 2 years old. When he was 7, he began studying strictly hip hop. When he was 17, he and his hip hop crew, Freshhappeared on Canada’s Got Talent. At 19, he teachers, performs and has added music and rapping to his repertoire.

“I wasn’t supposed to live past 8,” Morrissette says. He’s managed his CF with medication, hour-long physiotherapy sessions, support from his family and friends and a dedication to health and fitness.

“My whole goal in life is to show people that they can go farther than what their disease — or whatever they have — says they can,” he told The Mighty.

Now, Morrissette is the focus of a documentary from 22-year-old filmmaker and photographer Danie Easton. “Dancing With Cystic Fibrosis” (trailer below), shows the 19-year-old and his family in an honest, behind-the-scenes look at life with the disease.

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“I want people to see what Ryan goes through every day just to stay alive and to see how he faces everything with a smile,” Easton told The Mighty. “I also want people to want to help him and people with CF.”

As she promotes her project, Easton is fundraising so Morrissette can afford an Airway Clearance Vest, a product that would loosen the mucus that builds in his lungs every day.

The vest could save Morrissette time each morning and night and more effectively keep his lungs clear, making it easier for him to dance, work out and breath in general. But when he talks about his CF, he doesn’t mention the help he needs. Instead, he talks about how he can help others. This is why he tells his story.

“People get told there’s something wrong with them, and they think it’s the end of the world. They think they have to stay in their room until they die,” Morrissette said. “That’s just not the case. You can do things that make your life as good as you want it to be.”

If you’d like to help Morrissette purchase an Airway Clearance Vest, head here.

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Brother's Act of Love Helps Sister With Lupus Finish Marathon's Last 12 Miles

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With 12 miles to go, Jessie Russell thought the sun would put an end to her Boston Marathon run.

Russell, 26, lives with lupus, a chronic autoimmune disease — and sunlight can aggravate its symptoms. But just as Russell was ready to call it a day, her older brother, Jeffrey, who’d been following along to take pictures, stepped in.

“Let me just get an umbrella,” he told her, according to The Boston Globe. He went to a nearby toy store, bought a blue umbrella with cartoon sharks on it and ran the last 12 miles with his sister, all the while protecting her from the sun.

Watch the CBS Boston video below to catch a glimpse of the two running with that shark umbrella and to hear Jessie explain what it all meant to her.


h/t Reddit Uplifting News

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