When Others Use the Word ‘Defect’ to Describe My Son’s Diagnoses

442
442

“Defect.”

I hate that word more than any other in the dictionary. I hate it even more than the word “moist.” And that’s a lot of hate.

I’m never prepared to hear this word. After almost a year and a half, it always — no matter where I am or who I’m talking to — hits me like a ton of frickin’ bricks. I cringe inside while keeping an engaged, attentive facial expression when well-meaning friends or family members try to describe the conditions my son, Maxwell, was born with to outsiders or situational newcomers.

Christina Lewis’s son, Maxwell.
Christina’s son, Maxwell.

Google the word “defect,” and you’ll find it defined as “a shortcoming, imperfection, or lack.” Some other synonyms include, but are not limited to: fault, flaw, imperfection, deficiency, weakness, weak spot, inadequacy, shortcoming, limitation, failing.

I shudder. Not because I don’t like these words, but because none of them apply to him, and it’s scary to think that people generally associate “defect” with all of these other negative terms. None of it defines him. None. If you get down to it, no one is perfect, but generally, people don’t let those imperfections define them. My son’s “defects” don’t cause limitations or failings. If anything, he exceedingly surpasses all expectations given the circumstances.

My baby boy, my Maxwell, is the opposite of everything a “defect” is. Strength, in its personified form. Advantageous in nature. Perfection.

Maxwell is the epitome of determination. He was born with amniotic band syndrome (ABS) and an encephalocele, the latter of which was a lump of tissue and fluid attached to the lining of his brain, which protruded about three-fourths of an inch out of his skull.

ABS left him with six fused fingers and a thumb and a half. Only two of his fingers are considered “normal.” He underwent two major surgeries in his first year of life: brain surgery to remove the encephalocele and double hand surgery to separate his fingers.

He’s the strongest person I know. I adore him more than any words could describe. The odds of him being born with these two unrelated issues (so we’ve been told they’re unrelated) is one in 150,000,000. Yes, the number of zeroes is correct. One in 150 million. My kid isn’t one in a million. He’s one in 150 of those. He is extraordinary.

Maxwell is not “defective” — he’s different. Or as my good friend Google defines it in three separate definitions, “not the same as another or each other,” or “distinct; separate,” or my personal favorite, “novel and unusual.”

My son is novel. He’s not the same as you, and he’s not even the same as me, his mother. Isn’t that what most parents tell their children and try to instill in them all their lives?

“You are unique.”

“You are one of a kind. Separate yourself from the crowd.”

“It’s OK to be different.”

There is power in differences. Differences help us to persevere when things don’t go the way we want them to. Differences help us find solutions to various challenges. Differences can help us be better human beings. The word “defect” might imply “weakness,” and sometimes even shame because it’s assumed that perfection hasn’t been achieved.

But in my Maxwell — in my sweet, kind, adorable, rough-and-tumble, strong and persevering little boy — it has been achieved beyond measure. He is perfect. He is different. He is my son.

The Mighty is asking the following: What’s one thing people might not know about your experience with disability, disease or mental illness, and what would you say to teach them? 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 Submit a Story page for more about our submission guidelines.

442
442
JOIN THE CONVERSATION

RELATED VIDEOS

The Heartwarming Moment This Boy Missing Fingers Tried On His New 'Ironman' Hand

59
59

A 3-year-old boy, born without his fingers on his right hand, always knew he was a little different. One day he wished for what he called an “Ironman hand” to be like one of his favorite superheroes. Thanks to the kindness of strangers and some unique technology, his wish came true.

Rayden Waikiki, of Wailuku, Hawaii, was born with amniotic band syndrome(ABS). Because of his condition, the fingers on his right hand never developed. His family describes him as a happy and loving boy who thrived with his disability, according to the WPTV video below.

But when Rayden met his baby sister, he started to feel self-conscious for the first time about his differences. That’s when his family discovered an exciting solution.

His grandmother, Rulan Waikiki, found a nonprofit called E-Nable, which specializes in pairing affordable 3D-printed prosthetics with children who need them. Typically, similar prosthetics can cost as much as $40,000, according to KHON. Rayden’s Ironman-themed hand cost only $50 to build. It was given to the family for free thanks to help from donations, according to E-Nable.

Photo: WPTV/CNN Wire
Photo: WPTV/CNN Wire

 

A camera caught the heartwarming moment Rayden tried on his new hand (below). His grandmother says she hopes more people will consider a 3D-printed limb for their children with ABS.

“Some of them right now are being teased in school because they don’t have a hand or they’re different,” she says in the video. “But once they get this hand, their self-confidence is going to go through the roof.”

Watch the moment Rayden tries on his Ironman hand for the first time below.

Meet more Mighty kids. Like us on Facebook.

59
59
TOPICS
, ,
JOIN THE CONVERSATION

Autism From Our Dog's Point of View

207
207

Allow me to introduce myself. My name is Wolfie.

I am half Bichon and half Shih-Tzu, also known as a Teddy Bear Dog or a Zuchon. I am sixteen and a half pounds and I barely stand a foot off the floor, but do not let my size fool you. I may be small, but I am mighty.

I’ve been with my family for five months now. Everyone keeps saying the Easter Bunny brought me as a surprise.

But I remember the two biggest people in the family—the mom and the dad people—came to pick me up in a conference center off the highway in a small town called Portsmouth. We drove around for hours and then snuck home because they said the kids were finally asleep. I never did see a bunny.

For the first two weeks I was home, I tried this strategy:

Pee on couch. Look adorable.

Poop on rug. Appear irresistible.

Pee on floor. Tilt head to one side with cutest expression possible.

img_5247 (1)

This went on for a while until the dad guy said I was on something called “thin ice” and I’d better get house trained soon. He had just stepped in one of my puddles wearing only his socks.

He pretends he doesn’t like me, this dad. But I’m not fooled by him. When it’s late at night and all the small people have gone to bed and the mom is upstairs reading, he sits on the big red couch, and he calls to me in a quiet voice.

“Wolf, come on boy, come sit with me.”

I sit next to him and we watch shows that the mom doesn’t like — baseball and politics and something weird called “The First 48.” But I can tell by the absentminded way he rubs my foot that he’s only half-listening to the television. Instead he’s thinking about his patients and his children and tax returns and healthcare and insurance.

There are a lot of people in this house. Seven. Two big people and five kids. One time a man came and delivered some food in a brown paper bag that smelled delicious. When he stepped into the kitchen and saw all the kids at the counter, he asked if we were having a birthday party.

The round boy laughed and shouted, “Yes!  It my birthday! Let’s sing HAPPY BIRTHDAY TO ME! Happy birthday to me!” until the mom said, “Okay, Henry, we heard you. Eat your egg roll.”

This Henry boy is the smallest, but he isn’t too small. Life is very, very exciting for him, and he is very loud about it allHe fills up every room with his chatter and his laughter and his drawings, and he is squishy and delicious and curious and smart. He is so alive, you can almost see his heart beating through his favorite Batman shirt.

There are all these boys and only one little girl. When you look at her you just think about the color pink. She is sweetness and light and airy and calm, like the most delicate wafer cookie you hold on your tongue until it melts.

But she works very hard. She is the first one awake to take me out in the morning, even before I ask, and all day long she is trying to do things for other people — pack their snacks or sweep the floor or straighten the playroom.

Her mother worries, and the dad guy hopes if he tells her how beautiful and smart and sweet she is, she will believe it forever and never listen if someone accuses her of being fat or ugly or stupid or worthless.

I’m not worried, because this pink girl is so very strong.

There is a very big boy, a boy who stands taller than the mom’s shoulder. He wears glasses. They call him a “tween” sometimes, and I don’t know what that means but it seems to annoy him.

He and the mom can really get each other going laughing. They both like the same jokes. But there is a strain that I don’t think was there before. It feels new.

It feels like the beginning of something and the end of something all at the same time. He is starting to cleave from them, to long for video games and something called an “iPhone” and movies that are PG-13. The mom, she knows this, and her heart is aching to make the most of the time she has left, before this tween will pack up his glasses and his gym shorts and his Nook and drive down the driveway to a faraway place called “college.”

I may be very close to the floor, but I see it all.

There’s another big boy, just about as tall as the first boy. He also wears glasses. From behind they look like the same boy and sometimes people mix them up, but I never do.

From what I understand, I was supposed to help this boy. He has something called “autism” and he was very, very afraid of dogs, even little ones like me.

When the mom first brought me in from the garage where I was hiding and trying to stay very, very quiet, all of the kids squealed and laughed and clapped their hands. But he didn’t. His face was all twisted up and his voice was very loud and angry-sounding.

“I DO NOT like dogs. You have ruined my life. With this dog.”

I don’t know anything about autism or how to help people who have it. So I just did the only thing I knew how: I waited. I waited and waited and one afternoon when no one was watching he crept over to where I was lying on the couch. With one finger he stroked my paw.

“You are. Soft.”

This boy gets very, very mad. One day over the summer his temper rose until it felt like the sun was shining inside the house, the rays too hot to touch. He was screaming and hitting his head over and over again.

“No para! I will not have a PARA!”

I did not know what a para is, but the mom seemed to because she kept talking softly, telling him to take a deep breath and calm down; they would talk about it.

He came for her then. With his fists curled into the tightest balls he charged her wordlessly. She grabbed his wrists and held them with her long fingers and said, “Enough Jack,” so sharply her voice was like a knife cutting through the hot, still room.

He dropped his arms to his sides, and the only sound was his whimpering, “no para no para, no para.” I barked once, twice, my voice not as sharp as hers — more like an ice cube clattering into a smooth glass.

He fell to his knees next to me and buried his fingers into the fur around my neck, where it’s longest and deepest. Through his fingertips, I understood. I knew. Somehow, because of this strange thing called a para, the boy felt different. He felt worried and alone and disappointed.

He felt less.

There is another boy. He looks just like the dad, with dark hair and deep brown eyes that make you think of chocolate. He is all fun, this one.

But every once in a while a shadow crosses his face, and his eyes get cloudy, like the rain is coming. That’s when I know he needs a little extra cuddle, and I just turn on my back so he can rub my soft, white belly. He rubs it until the sun shines again.

“Come on, Wolfie, run outside with me!”

A couple of weeks ago, the big yellow bus started coming around again. We all walked down to the bus stop and everyone was so excited.  But when the kids got on and the bus pulled away, the mom put her head on the dad guy’s shoulder and said, “Oh, Joe.”

Slowly the three of us walked back up the driveway. They looked down and started talking to me in a funny voice with funny words. “You a wittle doggy, wight?  Just a wittle pup-pup.”  I felt confused.

Then I understood. Their babies were gone. Now I was the baby.

boy playing outside with a dog Last weekend we all went to a big field to play with a black and white ball. The mom and dad kicked it around with the kids, but the second boy said he only wanted to hold my leash and run with me.

So we did. We ran and ran through the fields together. And with each big step he took I could tell, for the moment, he was free. Free of the shame and rage and confusion and panic that follow him around all day like uninvited guests.

Running by my side  through the rich green grass, he wasn’t a child with autism or a fifth grader with a para or a brother who is not like the rest.

He was, quite simply, just a boy and his dog.

This post originally appeared on CarrieCariello.com.

Find more Mighty stories. Like us on Facebook.

207
207
TOPICS
,
JOIN THE CONVERSATION

I Couldn’t Change My Son’s Autism, but I Could Change One Thing

269
269

Like so many parents before me, one day I just realized it was autism. The realization burned through my core like a paper house on fire. I no longer had the power to squash out the facts that were screaming into my rigid silence. One day with shaking hands I ran to our computer. Our big Mac — the one where our legacy of pictures had been stored. I needed to find it and confront it immediately.

I wasn’t much of a camera girl during Grey’s first year. We took a few pictures in the hospital when he was born and just a few in the first six months.

photo2_zps8f9ddb6b

Those were etched in my brain and offered no clues. I needed more. The in-between. Everything leading up to this awful day where I transformed into fear and soot.

I sit and with icy intensity click through images, so afraid of what I might feel and find. Which day had it happened? I watch an old video. A profoundly ordinary moment where Greyson is pushing his favorite green truck all around the living room floor. Not just back and forth, fixated on the wheels. He is 13 months old.

IMG_2091

“Greyson, are you playing with your truck?” I asked, so clearly enamored with this little soul. As soon as his name sailed from my mouth his head turns fast enough to cause whiplash. Yes, that’s what I thought… that is my Greyson. The one I thought was still here. The one who now rarely turns to acknowledge his name. The one who no longer pushes his truck around; he is simply content spinning its wheels.

I scroll through the pictures with painful curiosity. My heart stops. It’s his second birthday. We bought him a package of Disney cars. He has lined them up and is examining them from the corner of his eye. I have no recollection of this specific moment and only believe it to be true because of the proof in the picture.

My stomach dropped out and my lungs burned shut. I felt like I saw the devil. Yes, it was in our house right at this moment in this picture. In him. So somewhere between 15 months and 24 months he went missing, and I didn’t even go looking for him. As his very own mother, his DNA. The person closest to him in the whole wide world. Why can’t I pinpoint the day?

I can’t watch those videos anymore. It aches in places I wish I didn’t have.

I think of these moments when I hear from a new mom or dad in my old shoes. Their greatest fear is my reality. They want anything but my outcome. They fear my life. Sometimes that scares me. Gosh, deep down I think we want people to admire us, maybe even envy our life. But people don’t and I understand. And I also now know the fear of it all is so much worse than the actuality of it. I think that holds true for everything scary.

And now… I’m being honest with every part of my mind — I fully believe this is exactly the life I am supposed to have. Not just the bits and pieces perfect parts. All of it. It’s a package deal and so much of it really was a custom choice by me. I picked this life. Of course I didn’t pick autism, but I picked pretty much everything else. Marriage has been really hard so we are working on it. That’s how I feel about life — we have the option to choose or change. So often we have a circumstance, an event, a fact — and in those first moments afterwards, WE GET TO DECIDE HOW WE FEEL ABOUT IT.

That is incredible. It’s like a flip of a coin but with less chance — more choice. We can easily pick “angry.” No one will really talk you out of angry. In fact, you’ll find more angry people. You will attract them. And because we all love being right, we find more evidence to support our anger. That’s called justification. We add in a good dose of entitlement. Like we deserve other things from life that better be pretty damn brilliant to offset this other pain. And we feel judgement at those who don’t carry the burdens we do. For those who take for granted the gifts they do have. Anger, justification, entitlement, judgement and the original life circumstance. That’s too heavy for any one person to bear.

But if we are really being kind to ourselves and really give ourselves time to hurt and mourn and breathe through it all and feel about it and think about it and talk to others — we can flip to the other side of the coin. The opposite of angry — acceptance. And when you free that angry space up there, that makes room for gratitude and a high gloss happy. A happy that you can easily wipe clean when you smudge it. It’s beautiful and light and freeing and gives you back the rest of your life.

And now that I am here I of course have hard minutes, moments and even days. But I can also say the good parts erase, justify and even make humble the bad. This is why I am here. They are why I am here. For me, motherhood taught me what life really means. It’s painful and raw and imperfect and mine. God, I’m so lucky.

If you don’t like where you are, flip a coin. Try again. Pick any color you want and start over again.

_MG_0270_zpsbb20d740

Much love,

Chrissy

P.S. If you are at the beginning of something hard, it’s impossible to see the light. I promise you, it is there. Little tiny lightbulbs will slowly light your way. It doesn’t feel like that. You swear it won’t be true for you. I promise, everything will look different soon.

This post originally appeared on Life With Greyson + Parker.

See the light at the end of the tunnel.
Like us on Facebook.

269
269
TOPICS
JOIN THE CONVERSATION

After a Devastating Diagnosis and a Suicide Attempt, This Dad Found a Reason to Live

77
77

Augie Nieto was lying in a hospital bed when his son told him he was no longer his hero. It was 2005. The then-47-year-old had just been diagnosed with amyotrophic lateral sclerosis (ALS or “Lou Gehrig’s disease”) and come to this conclusion: He’d rather end his life than become a burden to his family.

When he survived his suicide attempt, he made a decision in that hospital bed:

“I was going to be a hero in my son’s eyes again… I could die from ALS or live with ALS,” Nieto, now 56, told The Mighty in an email. “I chose to live with ALS and make the most of it.”

In the next three years, he lost leg and arm use. Today, he communicates with facial motions and a device he controls with his feet. But he’s outlived the disease’s 2-to-3-year life expectancy. After diagnosis, he assumed he would miss important family milestones — graduations, marriages, grandchildren. He’s gone on to watch all four of his kids get married and witness two grandchildren’s births. And in 2007, he and his wife, Lynne, cofounded Augie’s Quest, an organization that’s raised more than $40 million for ALS research and drug development.

“I’ve learned through my journey with ALS, that there are a lot of choices,” Nieto told The Mighty. “I can choose to celebrate what I do have or mourn the loss of something I can no longer do by myself.”

Still, when his youngest child, Lindsay, 25, was preparing for her wedding this past July, Nieto had to wonder: Would he spend the day celebrating her marriage or mourning that he could not walk her down the aisle?

He decided the latter wasn’t an option.

“Throughout my life, I’ve always set goals and done everything in my power to achieve them, whether it be in business or life,” he told The Mighty. “This is a goal that is so personal, so much more important than anything I’ve done – simply because it will make Lindsay happy. Seeing her happy is the best motivator.”

On his daughter’s wedding day in Rancho Palos Verdes, California, with a device helping him stand upright, Nieto walked her down the aisle. You can watch footage of the moment in the “Today” segment below.

Williams-Nieto_wedding_photos_by_Brian_Hawkins_12_140705-1503
Photo by Brian Hawkins
Williams-Nieto_wedding_photos_by_Brian_Hawkins_09_140705-0900
Photo by Brian Hawkins
Williams-Nieto_wedding_photos_by_Brian_Hawkins_29_140705-2848
Photo by Brian Hawkins
Williams-Nieto_wedding_photos_by_Brian_Hawkins_34_140705-2823
Photo by Brian Hawkins

“I kind of thought that I would’ve been looking at [my fiancé] when I was walking down the aisle… but I couldn’t look at anything but my dad,” Lindsay told Today.com. “I was just amazed he was able to get in his device and stand up. The sun was in his eyes, and I was just thinking that he’s done so much to be here and worked so hard that I just started bawling.”

This didn’t happen overnight.

Nieto exercises every day to gain strength and maintain the strength the disease has not yet taken from him. He completes intensive workouts with therapists at least three days a week, according to the Detroit Free Press.

He stays positive simply because “there is no other way,” he told The Mighty.

“Continue living and don’t give up. You’ll have days you don’t want to, and that’s OK,” he said. “On the other days, focus on what you can do and not what you cannot do.”

Visit NBCNews.com for breaking news, world news, and news about the economy

If you’d like to make a donation to Augie’s Quest, head here. For more information on the organization, head here.

Live Mighty. Like us on Facebook.

77
77
TOPICS
JOIN THE CONVERSATION

Why This Film's Entire Cast and Crew Pledged to Stop Saying the 'R' Word

2k
2k

A few months ago, we told you that the best part of an upcoming film called “Produce” is the story behind it. That still holds true.

two actors from the film 'Produce' Produce” follows a friendship between a former professional baseball player (played by Kristoffer Polaha) and a grocery store clerk (David DeSanctis). Behind the lens, DeSanctis, a 21-year-old first-time professional actor who has Down syndrome, affected everyone he met on set — including the film’s director, Chris Dowling and its producers.

Thus formed this pledge: no one — not cast, crew nor extras — would use the “R” word. On or off set. Because “mental retardation” — which used to be but no longer is a medical term — is so often used in a derogatory way, the “Produce” team joined the effort to “Spread the word to end the word.”

We’re on board, too.

You can like “Produce” on Facebook here.

Make Mighty choices. Like us on Facebook.

2k
2k
JOIN THE CONVERSATION

Real People. Real Stories.

7,000
CONTRIBUTORS
150 Million
READERS

We face disability, disease and mental illness together.