Parents, It’s OK to Admit This

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books Sometimes my kid annoys the hell out of me.

There, I said it.

I know as I write this, there will surely be mothers out there clutching their pearls in shocked outrage over my horrible faux pas. How can I say such a thing about my precious child, they’ll say. I never lose my patience with my child, will be the mantra of others. Positive reinforcement would solve all of your problems, the “helpful” mothers will offer. Regardless of the judgment and the advice, I stand by my initial statement. Kids can be annoying as hell, and it’s OK to admit that.

There seems to be some sort of unspoken rule in mommy-land. You’re never supposed to say a negative thing about your child. Bless your heart if you ever admit to being frustrated with them. Though I have a special needs child, I find this to be an across-the-board rule that encompasses all breeds of mom. Admitting that your child is sometimes obnoxious is unacceptable. Acknowledging that you get frustrated with said child is akin to saying you can’t handle being a parent. You must be doing something wrong.

Except that’s not true.

We’re all human beings. Human beings get annoyed sometimes. They get annoyed over big things, and they get annoyed over little things. Some of the things you get annoyed about might make you feel a little guilty. That’s OK. That just means you have a capacity for self-evaluation.

You also might feel justified in feeling the way you do. That’s also OK. Again, you’re a human being. It’s OK to have feelings. That doesn’t make you a bad parent. It simply makes you an honest one.

So, next time little Johnny is pulling the cat’s tail for the 200th time in 30 minutes, realize it’s OK to feel a moment of frustration.

Just take a deep breath, and hold on until bedtime.

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8 Ways Being a Sister to Special Boys Makes Her a Disney Princess

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Like a story from a fairy tale, my daughter was born at the stroke of midnight. But she didn’t wear glass slippers or sleep through the night like Aurora. She came with unmatched hunger and beauty. She was poised to be my heroine. A love for the ages. Then her two brothers came and that love, though no less, was shared.

Her brothers both have rare diseases. One has a central nervous system disorder called Pelizaeus-Merzbacher disease, while the other has fibrous dysplasia, a rare bone disease. Instinctively, our attention turned to doctors, research, prayers and arguments and counter-arguments about their care.

Two years have passed, and we’re still adjusting. In life, like a rugged mountain trek, we continue to encounter steep hills, rocks and tree roots. I believe God has been the trail guide who makes sure we don’t go off-course. And it’s on this terrain that my daughter have will no choice but to mature quickly and to endure.

My daughter is forced to concede the center of attention to her brothers. She tries to make sense of it all now, but in time she will be our guide. Though today I hold her hand, tomorrow she will hold all of our hands. This is my princess, the sister of two special boys.

1. She is Alice in Wonderland. One day she woke up and fell in this hole. Everything is upside down. Cats disappear, rabbits have clocks and there is more than one Mad Hatter wearing a white coat.

2. She is Cinderella. At least she feels like it sometimes. “Clean your room! Help your brother! Keep an eye on the baby!” She does her best to help. She traded gymnastics, ballet and painting lessons for trips to physical, occupational and speech therapies for her brothers. And with forged kindness, she tends to her brothers after surgeries, brings them food, protects them from falls, becomes their playdate and hauls them along.

3. She is Ariel. A romantic at heart, she loves music, flowers and forks. She’s passionate about the sea and has a profound desire to explore the world. Someday she will. Maybe with us, maybe alone. I am convinced that during those travels she will appreciate more, laugh more, live more and pray more.

4. She is Jasmine. She loves animals, but doesn’t own a Rajah, an Abu, a Lady or a Tramp. She has just one humble and inconspicuous fish, Cleo. This humility will set her apart. She will see the value of people for who they are and not for what they own. She has come to learn that truth early on.

5. She is Belle. Books are her escape from this world. She immerses herself in spectacular prose where heroes fly, maidens are rescued and good always wins. By now, she has seen firsthand the heroic hearts that lie inside little children with illnesses. Valiantly, she steps off the sidelines and joins them in nightly prayers, kisses and hugs.

6. She is Merida. A little bit of a rebel with a cause, she questions and expects insightful explanations. She doesn’t take a simple no for an answer. Like a mother bear in training, she defends with all her might those she loves and those who are overlooked and frowned upon.

7. She is Elsa and Ana. A sisterly bond exists in her heart. Though she was not blessed with a sister confidante, she seeks one. Sometimes she finds it in her mother, her cousins or her friends. Her heart is not frozen, and the perils she faces will give her the fairest, strongest and bravest of all hearts. She will understand true love like no other.

8. She is Sofia the First. Her world has been turned inside out. She’s part of a world she doesn’t understand, but she tries her best. She doesn’t know the rules and makes mistakes. But she makes up for them with absolute kindness to those around her. In time, she’ll find her place in this world and will become her own princess. She will be my very own Samantha the First.

Though she possesses qualities of a number of princesses, she’s in her own league. She’s perfectly imperfect. I pray the tribulations of our rare life do not pull us in so deep that we are robbed of living the extraordinary moments. I have faith that when all is said and done, she will know she matters, that she will make a difference and that she will know that she is loved. And more than anything, that she is just as special, if not more.

The Mighty wants to hear more about relationships and special needs parenting. Can you share a moment on your special needs journey that strengthened your relationship? 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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15 Secrets of People Affected by Multiple Sclerosis

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Multiple sclerosis (MS) is an “unpredictable, often disabling disease of the central nervous system” thought to affect 2.3 million people worldwide, according to the National MS Society. The condition presents itself in a variety of ways, so much so that you may not realize a loved one has it.

To learn more, The Mighty asked its Facebook readers and contributing writers to tell us the one thing they wish others could understand about MS. Here’s what they had to say:

1. It’s a disease most people wouldn’t recognize.” — Jason Tanner

2. “For me, MS means facing the unknown every day, wondering and worrying if a new feeling or sensation is a normal thing or an MS thing. I don’t want this disease to run my life.” — Jessica Adrianna

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3. MS can go undiagnosed/misdiagnosed. If it seems someone you love is quietly enduring symptoms, please encourage them to speak up.” — Angelica Catalano, senior producer at The Mighty

4. “So far, the embarrassment has been tough. Embarrassment when I’ve wet myself, when I fall over, when I can’t participate due to the wheelchair not fitting wherever I need to go, when I need help taking care of my own baby.” — Tristen Wuori

5. “It’s not the end of the world! There are lots of things people with MS can do to improve their health through diet and lifestyle choices.” — Rachel Hogg

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6. “I wish people understood, not just for MS but in every situation in life — if I did not ask for help, don’t! That’s interfering, not helping. I stumble a lot, my balance sucks; adding another person’s unpredictable movement by holding my arm makes it way worse. If, if, I need help, I will ask.” — Tim Schaub

7. Every single person with MS has his or her personal combination of symptoms. It depends on where the inflicted parts of the brain and/or spinal cord are situated. So if you ask people with MS about it, you will get a huge variety of answers… When you deal with someone having MS, ask questions about how he or she is today or right now. Never pity him or her, just deal with him or her naturally, like you would with anybody else.” — Annettte Hillringhaus

8. “The wobble only adds to my swagger.” — Jason, from Nadine Friedman-Roberts’ photo series, “Whisky, Waterfalls, and a Radio Preacher.”

9. “Every setback and every challenge can make it feel like we’re back at square one, but I constantly remind myself to make the choice to thrive.” — Stephanie Butler

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10. “[MS is my] frenemy because, in hindsight, there are lessons I wouldn’t have learned without [it] entering my life.” — Jenna Blackwood

11. “I may be walking slower, but I’m racing.” — Jason DaSilva

12. A life with multiple sclerosis is not a death sentence.” — Daryl H. Bryant

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13. “No, I’m not resting. I’m living a full life within the abilities I have. Having multiple sclerosis is not within my power, but what is within my power is refusing to let MS gain the upper hand.” — Cathy Chester

14. “I am not multiple sclerosis, and even with it, I can accomplish so much.” — Samantha Stambaugh

15. “I can choose to be miserable, or I can choose to do something good with this.” — Kaleigh D’Anna

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Related: Self Portraits Show Disability in a Way It’s Rarely Seen: Honestly

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When a Stranger Pointed Out What I’d Been Missing About My Daughter’s Disability

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When my daughter was a toddler and should have been walking, making eye contact, and babbling, I got looks from people. Their eyes said they felt sorry for me. They had pity for her.

I hated it.

I didn’t feel sorry for us. I felt many things, but not pity or shame. I wavered between elation and depression, joy and sadness.

No one saw all the hard work I put in at home with her. Our tribulations weren’t witnessed. Our small victories went unseen.

On the flip side of that, I remember there was this time in a public restroom when Emma was younger. She was dancing and laughing, flapping her hands about and twirling. Her soft wavy red hair was flying about. I was tired and weary that day — I must have had a frown on my face.

An older woman came out of one of the stalls and she was absolutely beaming at Emma. She said something to me like, “Momma, smile. Look at her. She’s so happy.”

That woman was right. I think I expected her to give us a dirty look and give a grumpy “hmph!” That seemed to be how most of our experiences went.

I returned the smile and that day I learned something — I needed to show others how joyful and appreciative of life we are. I needed to show by example that my daughter is a treasure. Her spirit is amazing.

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I asked some family and friends recently what is the first word that comes to mind when they think of my daughter. Some answers were, “Beautiful soul,” “Kind,” “Dancing” and “Fashionista.”

“Always says what’s on her mind,” “Takes the time to stop and talk to me” and “Notices every detail of my outfit/purse/shoes” speaks volumes, don’t you think?

The following is a quote from my collection of thoughts about my kids.

“Sometimes the best way to be reminded to not take life too seriously is just to take a cue from Emma. Dance. Everywhere you go. There’s always music playing in her head. If you listen closely, you can hear it too.”

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.

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Teen Who Carried Brother With Cerebral Palsy for 40 Miles Has Something Big Planned

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In June 2014, Hunter Gandee and his younger brother Braden made headlines when they walked 40 miles over two days in the name of cerebral palsy awareness. Hunter, then 14, carried then 7-year-old Braden, who has cerebral palsy, on his back. The two traveled all the way from their hometown of Temperance, Michigan, to the University of Michigan in Ann Arbor, The Mighty reported last year.

This year, the brothers are taking cerebral palsy awareness even further. Hunter and Braden are currently planning a three-day 55-mile walk, The Associated Press reported. Like last year, Hunter will carry Braden on his back the entire time.

The upcoming “Cerebral Palsy Swagger” walk will begin on June 5 at Douglas Road Elementary, Braden’s elementary school, in Lambertville, Michigan. There, they will participate in the ceremony for the CP Swagger Shipyard, an inclusive playground at Braden’s elementary school the duo raised money for last year. The brothers are scheduled to complete the walk on June 7 at the University of Michigan.

“This year’s goal will be to get the attention of the leaders, innovators and engineers of tomorrow to show them the need for a truly accessible world,” Hunter says in the video below. “A world that will be inclusive and embrace people with cerebral palsy; one that lets people with different abilities not only become included but excel.”

Learn more about the upcoming walk in Hunter and Braden’s adorable press conference:

Feature photo from the Cerebral Palsy Swagger Facebook page.

For more information about Hunter and Braden’s upcoming walk, visit the Cerebral Palsy Swagger blog. Follow the project’s Twitter and Facebook pages.

Related: The Incredible Bond Between These Siblings Keeps Blowing Us Away

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When a YMCA Employee Became a Superhero for My Son With Autism

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Superheroes do exist.

I’d like you to meet one named Chuck.

Chuck works at our local YMCA and has bonded with my son, Griffin, who has autism, over video games, Pokémon and all kinds of topics. He’s even done math with Griffin, which is amazing to me because math is not my thing.

A few weeks ago, Griffin and Chuck had a tentative date to hang out for a few minutes. But when Chuck was working and unable to show up, Griffin had a huge meltdown. Although Griffin continues to work hard, he still has a hard time being flexible and expressing his emotions appropriately. This meltdown was a combination of yelling, crying, kicking on the wall and cursing. It all happened right outside the childcare center.

The staff at the YMCA are all so kind to Griffin, and each one of them has become a superhero in my eyes. But this was the first time they witnessed one of his meltdowns, which usually happen in the privacy of our own home.

As I tried to get him outside, I said, loud enough for everyone to hear: “I know the cursing helps you express your feelings, but other people might not understand. Let’s get to a safe place.” I hoped explaining it this way would give people a better understanding of what was going on.

When we got outside, I just held him. He was so upset and kept saying, “I want Chuck! I want to talk to him about video games! I want to talk to him! I want to talk to him!” I tried hard not to show outwardly what I felt inside. I didn’t know how I even got him outside, and I sure as hell didn’t know how I was going to get him back home. It’s typically a lovely 15-minute walk, but in this moment, I just didn’t know what I was going to do. 

And then, just like Batman or Superman, Chuck came outside in the nick of time. He went over to Griffin and hugged him, and then sat with him and talked to him. I started to cry because I was so grateful. He sat with Griffin for a generous amount of time and told Griffin he wasn’t having a great day either. He said talking to Griffon helped him, too. I thought, My God, I could never properly express how grateful I was to him.

As we were leaving, Chuck hugged Griffin and told him, “You’re a good kid.” And he really is a good kid. I just wish I could help him more in those moments. God, I wish I could be a superhero.

When I talked to Griffin later, he said, “Mom, I’m sorry I embarrassed you.”

“You didn’t embarrass me,” I told him. “Maybe just 1 percent, but 99 percent of what I was feeling was heartbroken. I couldn’t help you, no matter what I did, and I love you so much.”

Chuck reminded me that we all have the power to be a superhero. You don’t need the ability to fly or leap tall buildings in a single bound. To be a superhero, all you need are kind words, a smile and the willingness to see a situation in a different way, led by love and not judgment.

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A version of this post originally appeared on What Will This Day Bring

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. 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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