When I Became ‘MomGyver’ at the Airport for My Son With Special Needs

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One day in October 2010, in the Nashville Airport, I became MomGyver. Yes, I had a little help from Mr. Dyson, but he was merely a cog in my machine.

Near the end of a three-hour layover on our way to California, we decided we better take Max (who was 8 years old) to the bathroom. Max is globally delayed and has apraxia and sensory processing disorder. Also, at that time, he couldn’t tell us when he needed to go. We’d been putting it off because it was often a fight. (So, really, everything that ensued was our fault.) But I got him to stand up and quickly realized he was soaked. He never has potty accidents… he usually holds it like a champ. We were stunned, and we didn’t have any extra clothes with us.

I took him into the bathroom to get him cleaned up and plotted my next move. I washed him off and rinsed out his underwear with the hopes that I could find a pair of shorts or sweatpants in an airport shop in the next 15 minutes before we were supposed to board! Then I saw it. The Dyson hand dryer. If you’ve never used one of these, hunt one down. It’s an amazing piece of engineering. I’d used one before, so I knew the power and that it blows air from two sides. In a matter of five minutes, Max had dry underwear. I just stood there with Max, his shirt long enough to cover him up, and moved his little boxer briefs up and down in the dryer. I even got a couple of “so been there” looks from other women.

OK, he was covered but his sweatpants were still wet. And we needed to board in 10 minutes. I delivered him to my husband, Cris, and ran to all the nearby stores, but not one had bottoms of any kind. They all had T-shirts and sweatshirts. We can’t possibly be the first family to have this happen! There was a pricy kids’ clothing store, but she only had up to size four. So I got in line with my guys, feeling slightly defeated. Cris just carried Max (who was the size of a 6-year-old) on the plane. If anyone noticed the lack of pants, they didn’t even give us a sideways glance.

We get settled, and right after takeoff, Cris needed to use the restroom, I asked him to rinse the sweatpants so they wouldn’t smell. Then I realized that the middle seat in front of us was empty. Score! He returned with the wet pants, I hung them slightly over the seat and aimed all three of our air vents at them and flipped them half-way through the flight. We landed in San Diego three and a half hours later with dry pants.

And it’s a good thing, too, because while Max and I waited at the end of the tube for Cris (who was getting the gate-checked stroller), Max channelled the Mayor of San Diego. He said “hi” to literally every person who came off that plane. Even groups of three, he’d shout “Hi! Hi! Hi!” And they all said “hi” back. I wish I had video of it… it was ridiculously priceless. But I seriously doubt anyone would’ve thought it was so cute if he’s been standing there sans pants!

The Mighty is asking the following: Share a travel moment related to disability and/or disease that made you laugh, cry, roll your eyes or was otherwise unforgettable? 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. Check out our “Share Your Story” page for more about our submission guidelines.

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What Seemingly ‘Small’ Obstacles Can Feel Like When You’re in a Wheelchair

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If you don’t need assistance getting around, it might be difficult to fully understand the challenges people who use wheelchairs face every day. Seemingly simple things like potholes or a set of stairs can become daily obstacles.

Check out the BuzzFeed video below to gain a little perspective on what it’s like to use a wheelchair.

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My Best Friend and I Are Both Blind. This Is What I See in Her Eyes.

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My best friend, Caitlin‘s, eyes are among the precious few I’ve seen, although I haven’t seen them in any conventional way. I didn’t gaze into them during heart-to-hearts when we met in person back in 2009 after five years of long-distance friendship. Instead, the first time I saw them was nine years ago, in a picture of her snuggling her first guide dog, Lannie. I’d blown the image up on my ancient 19-inch Phillips monitor and pressed my nose to the screen as I strained to make out details through my right periphery.

Caitlin had a serious case of red eye in that photo. It almost looked kind of eerie. The camera flash, refracted through the vitreous humor in her eyes, bounced off of her weakened retinas and made her pupils and irises look almost like red marbles. I laughed. Somehow Caitlin managed to even make red eye look cool. My own cases of red eye always show up splotchy. Although I didn’t see the brown hue of Caitlin’s irises, I noticed the shape of her eyes. They were large, open, somewhat slanted and had a laughing look about them. How I understood that expression despite being visually impaired myself — how I was able to see that Caitlin’s smile met her eyes — I’ll never know.

The second time I saw Caitlin’s eyes was when she sent me an obligatory junior prom picture. She looked truly stunning, standing in front of a tree in her simple blue dress with that familiar, pearly smile stretched across her face. With my own cheek glued to the same monitor, I enlarged the photo to its full size and honed in on her eyes. No red eye this time — her friend’s mom had a fantastic camera — and I finally saw the wonderful, warm shade of brown.

I can’t tell you what it looks like when people have a twinkle in their eyes, or what it looks like when two people love each other deeply. But what I can tell you is, although it may have been a trick of the light, I saw warmth in the depths of her eyes — warmth and light — and that same, smiling shape about their edges. That image is still branded in my mind’s eye eight years later.

Mel and Caitlin hugging and smiling
Mel and Caitlin hugging and smiling.

Caitlin was born with only light perception, and she’s always seemed set in her identity as a blind person. If she’s ever lacking in confidence, it almost never shows.

For me, despite the fact that my degenerative eye condition is also congenital — and although I’ve been blessed with a built-in support network of family, about half of whom are blind — I haven’t always been secure in my identity as a person with a disability.

As Caitlin confides in me about problems with her eyes, I reflect on how far I’ve come thanks to the countless hours she’s spent reading letters about my various shocks of vision loss, how terrifying it felt when my vision would fluctuate from one day to another and how uncertain it was when I’d lose my vision completely. Years later, although I wouldn’t say being blind is a walk in the park, I’m far more secure about who I am, and I even consider my blindness to be a positive aspect of my identity. Now, even though I can’t really fix what’s causing Caitlin pain, I get to support her the way she supported me.

There’s scarring on Caitlin’s right eye now, left by a few nasty cases of keratoconus. People are always asking about it, she says. She worries it’s prominent — that it’s among the first things others notice about her appearance — and she despairs her inability to look in a mirror and ascertain how bad it is or isn’t.

I want to cup her cheek in my palm. I want to show her hand over hand the residual scars on my left leg from my near-fatal rail platform accident last summer. But we’re 1,700 miles apart, and I know it’s not the same. Our legs convey us forward, but our faces are in the foreground. I want to knock some sense into people for barging into Caitlin’s business, because even though they’re genuinely concerned, they ask questions before considering how they might make her feel. And perhaps most of all, I wish I could see her now so I can tell her it’s not so bad. I know it can’t be. It’s just different than what people are used to seeing when they look into her face which, mind you, is still most often smiling.

And her eyes still shine. Both of them. They shine with an outer beauty and the joy dancing behind them. No scar can blot out that light. And I may be seeing this with love, but that doesn’t make it any less true. My eyes, though feeble, have seen enough.

The Mighty is asking its readers the following: Describe a time you saw your disability, illness and/or disease through the eyes of someone else. 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. Check out our “Share Your Story” page for more about our submission guidelines.

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When I Learned My Son With Autism Is in the Bottom 1% of His Peers

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So much has changed in such a short time for my son, Timothy. I’m having a hard time catching my breath.

Last week was hard. I learned Timothy is being discharged from IBI (intensive behavioral intervention) therapy which has been his second home for almost 18 months. But that’s not the hard part.

The hard part was reading he was in the bottom one percent of 100 of his peers. Oh how that hurt my heart.

A general blanket of numbness came over me as it sunk in. Yes this is real. It’s not going away any time soon. And even as I felt it wash over me, I was calm. I knew these things already. I was not surprised.

These are some other things I know about my son.

1. I know my son and I know his struggles are real and not buzz words.

2. I know that when he tries to print his name, today he can’t, and that’s OK.

3. I know that when he tries to make it to the toilet, sometimes he can’t, and that’s OK.

4. I know that when he tries to fit in he won’t today, and that’s OK.

5. I know that when he tries to eat “other” foods, today he can’t, and that’s OK.

6. I know that when he tries to tie his shoes, today he can’t, and that’s OK.

7. I know that when he tries to do everyday kid things, today he can’t, and that’s OK.

8. I know that when he rides the bus (aye, it ’tis the short one, folks) he wears a harness to keep him safe, today, and that’s OK.

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9. I know that at 7 years old he wears diapers still, today, and that’s OK.

10. I know he feels happiness today and that’s OK.

11. I know he feels loved today and that’s OK.

12. I know he tries today and that’s OK.

Maybe tomorrow he can do something he can’t today. Maybe not. I am OK with that, either way. We live for today and what he can do. This is what Timothy’s autism looks like. How about yours?

A version of this post originally appeared on The Book of Timothy

The Mighty is asking the following: Share a travel moment related to disability and/or disease that made you laugh, cry, roll your eyes or was otherwise unforgettable? 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. Check out our “Share Your Story” page for more about our submission guidelines.

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The Word That Made My Son With Bipolar Disorder Suddenly Change the Channel

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When my son quickly changed the channel the other evening, my heart sank.

Our TV is tuned to the Disney channel all the time. I love how they keep with the times but still have wholesome programming. We were watching “Dog with a Blog” and the son in the show, Tyler, called someone “crazy.”

I know, people say that all the time, but here I am, with an autistic son, who also has bipolar disorder. He is currently in a severe depressive cycle and very sensitive. To hear this term used as a joke really bothered him. I used this to get him to open up to me.

“Why did you change it?” I asked. “Because Tyler said ‘crazy.’ I don’t like that, Momma. Do people think that I’m crazy?”

So now you see why it upset us. When I was growing up, kids called everything “gay.” If something was stupid or you didn’t like it, it was “gay.” As a teen, I saw no harm in this. The thought never crossed my mind that it could hurt someone. Until someone in my family, whom happens to be homosexual, expressed hurt in how I threw that term around. I never used it again.

I reach out and divulge details of our journey because we want to help change the world. We want parents and other children to know that they aren’t alone in their struggles. We also want to educate our youth that some words should not be used an adjective.

It may not hurt you to hear it, but I promise you it’s hurting someone else.

This goes beyond just “crazy” and “gay.” Words like “retarded,” “short bus,” “insane,” “cray cray,” these words hurt!

If you’re a tall, skinny person you wouldn’t want someone referring to you as “that tall, skinny kid.” You would want to be referred to by your name, or something positive about you. Same goes for someone with a mental illness. They don’t want to be called “crazy,” or “cray cray.” Nor do they want to hear you calling others that.

“Sticks and stones will break my bones, but words will never hurt me,” is Bull! Words hurt, sometimes more than a punch to the gut.

We are only as good as the examples we set for our children. So as a mother, I beg you to think about the words you are using as an adjective. You set the example for your children. If they hear you say them, chances are they are repeating them.

The Mighty is asking the following: What was the moment that made you realize it was time to face your mental illness? What was your next step? 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. Check out our “Share Your Story” page for more about our submission guidelines.

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15 People Who Have Had Cancer Share What Helped Them Most as Patients

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If you or a loved one has ever received a cancer diagnosis, you might understand how important supportive friends and family can be. Sometimes, it’s the smaller, day-to-day things that mean the most. Picking the kids up from school, offering a hand to squeeze on a treatment day or just being there to share a laugh can make such a difference for someone who is living with the disease.

Fuck Cancer, an organization that focuses on prevention, early detection and support for people affected by cancer, asked its readers who have lived or are currently living with cancer to share the best thing someone has done to help them. We wanted to share some of their responses.

Here’s what they had to say.

1. “My nurses were great listeners. They were compassionate, and I felt like they genuinely cared about me.” — Emily Smurthwaite Freund

2. “Without me asking or saying anything, my neighbor would stop and get my kids to walk to the bus stop. Pancreatic cancer and chemotherapy were hard enough. She made my day a little easier.” — Lisa Bitzel Clevenger 

3. People just being kind and friendly have made difficult times more bearable. A smile goes a long way. — Hetti Spagoh

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4. “The best nurse I had told me about how hard the fatigue was going to be… and she was spot on; it was brutal.” — Lucas Damm

5. “All my Facebook friends inspired me to fight and live strong. My parents wouldn’t let me give up. My doctors supported me.” — Jodi Lameo

6. “Expressions of sympathy have turned out to be more comforting to me than words of encouragement because sometimes you don’t know if you can believe the positive stuff. When someone expresses sympathy, they’re acknowledging how sh*tty it is, and that makes me feel like they’re really thinking of me and how I must feel.” — Rosaleen D’Angelo

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7. “When I was first in the hospital and had just been diagnosed, my nurse sat up with me one night when I was terrified. She held my hand, and we just talked. She nodded and listened and validated my fears, and gave me honest answers and strength with her calm, gentle words.” — Sara Thompson

8. “A doctor telling me I’m an inspiration.” — Troy Waters

9. “Being treated like a normal human being. We aren’t fragile or brittle. We just want people to treat us like everyone else.” — Stephanie Carine Muir

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 10. “When I had cancer, my kids were the most supportive. When I lost my hair, they colored on my head. When the hair started growing back they all put little barrettes in my hair. It made me laugh so hard.” — Sandra Lee Elliott

11. “My dad stayed two weeks in the hospital with me day-and-night so I wasn’t alone and scared, and he drives me to all my appointments. Breast cancer sucks, but when you have family and friends for support, it makes it bearable.” — Alisha Ann Pelt

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12. “My best friends brought me food and took me grocery shopping. Also, my friends treated me as a person and not a person with cancer.” — Krystyna Pentlicki-Maloney

13. “My daughters, who were only 15, 12 and 8 when this started, refused to leave me. Even though it was ugly and I didn’t want them to see it all, they refused to hear that Dad’s or Grandma’s house would be better. They said they would soak in every last minute until I was gone or until I got better. (I’m getting better).” — Jennifer Silver

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14. “Doctors coming to me before my surgery and explaining all the ins and outs of the operation to make sure I was fully informed.” — Sean Walsh

15. “After my second surgery, a friend used his hotel points so I could stay in a hotel to recuperate for a few days (since my daughter had just turned two and didn’t understand the concept of Mommy needing to recover). Another friend stocked the room with delicious food I could eat, gossip magazines and two beautiful scarves. She also went to the pharmacy to pick up my medicine. Other friends sent chocolate and a nightgown. Yet another sent a check with explicit orders to spend it on myself. I got a pedicure and a pretty dress and felt pretty for the first time in months. The list goes on and on! A gift from the heart does wonders.” — Vanessa Runnalls

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*Some responses have been shortened and edited.

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