The drive gave me time to think, to question if this was a good idea.

I was nervous. Six women meeting up. And the only thing we had in common was the brain injury our children experienced at birth.

My husband joked that I was walking into a murder movie plot. That didn’t scare me. My emotions did.

What if we didn’t get along? What if we had nothing in common besides hypoxic-ischemicenc ephalopathy (HIE)? How would I feel about another mom whose kid was doing more than mine developmentally?

The real question: Was the commonality of HIE enough to make a real connection with virtual strangers?

The answer: a resounding yes.

That weekend was filled with the best mix of laughter and tears. We shared stories and fears. We laughed constantly. We didn’t sleep much because we packed that weekend full. We immediately bonded in a way I never imagined.

More than a year and a half later, the women I met at that cozy Michigan chalet are my lifeline.

They’re the people I turn to when I feel overwhelmed with therapies and diagnoses and the never ending what ifs. They get my life. Best of all, they get me.

Our lives are not the same. We have different backgrounds. Different family structures. Different ideologies.

And our kids are different. Some can walk. Some can’t. Some can eat. Some can’t.

But when it comes down to it. It doesn’t matter.

We’re the support each of us was looking for when we entered this crazy world of HIE and special needs parenting.

amy

I love my friends I had before HIE. They’ve supported me and been there for me.

But there are times I feel like an outsider.

When they talk about milestones and typical parent problems — potty training, getting their kids to eat their veggies, having alone time — I don’t have a lot to say. They can’t understand HIE, and I don’t want them to.

That’s why I need my fellow HIE moms.

When one of our kids is getting ready for a medical procedure or their yearly IEP, these moms the ones who say: “You got this.”

When I’m feeling down about the “what if” and “why me,” they build me back up.

They know what it feels like to love your child with all your heart but wish that life could be different.

So when Drew sits for six seconds with minimal support, I cheer! Even though my daughter hasn’t yet.

Or when Max takes his first steps, my eyes well with tears, and I proudly watch that video five times in a row. Even though my daughter can’t.

When Kaden’s mom worries about his progress at school, I listen and encourage her. It doesn’t matter where Emma measures against his progress. I’m there for my friend because I care about her.

And when Alex has a hospital stay due to a bug my daughter can more easily fight off, I know his mother sees my “get well” wishes for what they really are — love and support. She doesn’t push them aside because I have a child who isn’t as medically fragile.

HIE affects every child differently. But we’re all in this together.

We crave support and understanding. The feeling I get when I see, talk to or text with these women is my comfort.

Since our first meeting, we’ve gotten together three more times — once with our kids, once with about 20 other awesome moms and once to celebrate a new baby soon to enter our families.

Each meetup is filled with laughter.

We talk. We get loud. We eat. We drink.

And I come away feeling refreshed and ready to take on whatever HIE throws my way because I know I’m never facing it alone.

They’re my normal.

And everyone should get to have that feeling.

For all of February, The Mighty is asking its readers the following: Describe the moment a stranger — or someone you don’t know very well — showed you or a loved one incredible love. No gesture is too small! If you’d like to participate, please send a blog post to [email protected] Please  include a photo for the piece, a photo of yourself and 1-2 sentence bio.

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Tragedy couldn’t stop this couple from getting married the way they always wanted.

Larry Ragsdale and Kelcie Yeoman have been best friends since grade school. They were high school sweethearts in Grants Pass, Oregon, where Ragsdale was a football and track star, featured on Sports Illustrated’s “Faces in the Crowd” list. Yeoman, who was the student body vice president, cheered him on every step of the way.

 

The two encountered their first tragedy in 2007 when Yeoman’s mother, Anita, was killed in a car accident.

“Larry was just kind of holding me and crying,” Yeoman told ABC News. “He told my mommy, he said, ‘I promised her that day that I would take care of you forever.’

In 2010, Ragsdale was ready to make good on that promise. He asked Yeoman’s father for permission to marry the love of his life. He planned to pop the question three days later, with her family there, on a trip to Disneyland.

But before the trip happened, he was in a head-on collision with an alleged drunk driver, according to The Corvallis Gazzette-Times. Yeoman, following behind in another car, was the first on the scene to find her boyfriend unresponsive. After being in a coma for months, he woke up with severe brain damage, unable to walk like normal, reports People Magazine.

Yeoman never lost hope in the idea of a full recovery. She even got a job working at the same hospital that Ragsdale was undergoing rehabilitation so she could always be by his side.

It took three difficult years, but in 2013 Ragsdale could finally to ask the question he’d been saving. Yoeman’s sister captured the heartwarming moment on a video (below). She posted it to the fundraising page she set up to raise money for a wedding in Disneyland.

“He didn’t get the chance to propose to her the way he had intended to, but we now have the chance to give this amazing couple the wedding and honeymoon of their dreams at their favorite place on earth,” McKenzie Yeoman wrote on the IndieGoGo page.

Not only did the page exceed its goal, but ABC News and Disney Fairy Tales Wedding and Honeymoons recently gave the couple a five-night honeymoon at the Disneyland resort in California. That moment was also captured on camera.

Photo: Facebook / Send Kelcie and Larry to Disneyland

The couple will use any excess money from their fundraising campaign to help pay for Ragsdale’s continued medical treatments.

Photos from the couple’s Facebook page

Find more stories of strength. Like us on Facebook.


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.


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.”


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.


“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.

Real People. Real Stories.

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