When I Realized My Older Sister Is Different

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When I was a kid, I didn’t want adventure. I wanted normalcy. There were so many times I wished, for my sister’s sake, she could be a normal big sister who could give me advice, date boys and share clothes with me. That’s not what I have. I have Emily.  

Emily has a random mutation of a single gene — something minuscule changed her entire brain, resulting in Angelman syndrome, a rare neuro-genetic disorder that causes severe developmental delays, absence of speech, gait/movement/balance problems and in most cases, seizures.  We’re lucky, however, because unlike the majority of cases, Emily has a mutation of the UBE3A gene, instead of the deletion. She’s therefore more mildly affected than those with the deletion, who sometimes cannot walk. Emily learned to walk at the age of 3 and has never had seizures. Because the technology was not yet developed enough to detect her genetic mutation when she was young, she was not diagnosed until high school after extensive genetic testing at the University of Chicago. So before that, I had to use phrases like “severely cognitively disabled” in an attempt to explain my sister.    

I remember the day I realized my sister was different. I was around 3. I’d gotten a splinter and ran inside to my mom. I sat down on the kitchen floor and waited for my mom to get tweezers and a Band-Aid. Emily, 6, sat down next to me and fussed for a Band-Aid. “I know, honey. You want one too,” my mom said, wrapping one around Emily’s finger, even though there was no need. As I sat there watching this, some connection sparked in my brain: “I’m growing up ,and Emily never will.”  That is one of my first memories.  

Emily turned 23 this year. We have another brother who is five years older than her. It was a confusing limbo for me as a child, since I was physically younger than Emily but mentally older.  Emily will always be about 3 years old cognitively. When I was a kid that was kind of fun since I always had a playmate. We would run around in the backyard (albeit, Emily kind of shuffled) and swing and play in the sandbox. I learned not to get upset when she knocked down my sandcastle and to stay away if she got angry. As my parents taught me, the rest of us have the ability to use words when we’re upset, but Emily doesn’t so she expresses it any way she can, generally by having a tantrum. The best thing to do was get out of her way when she was mad and let my parents handle it. 

I didn’t know how to talk about my sister when I was young. One neighbor girl, when we were 5, asked, “Does your sister wear diapers?” I hated the snotty look on her face so I lied and said no. A few years later, at Chuck-E-Cheese for my eighth birthday, Emily and I were crawling around the tubes and two younger girls watched as she passed by. “She’s fat,” one said to her friend. I bit my tongue and shoved Emily forward. Even though she didn’t understand the words, I certainly did. In middle school, when a fellow classmate was making fun of individuals with disabilities, I kicked him in the shin.

All of this information, these anecdotes, these memories, have been buzzing around my head for months. I’ve been trying to organize my thoughts about Emily for a long time. How does she see the world? How does she see me? I’m her translator, her referential point in new situations, her protector, her teddy bear. I know her language of noises, pointing and signs as if I were bilingual. It’s not easy all the time. She has impressive tantrums, sometimes in public. She’s like a clingy puppy when I’m home from college. And yes, she can be kind of gross, like a toddler would be. I’d rather not say the amount of times I’ve been sneezed on.

But you know what? Without her, I wouldn’t be who I am. I wouldn’t be as compassionate and patient towards people of all abilities. I wouldn’t have written about her in my college essays and in magazines. I wouldn’t be studying to be a speech-language pathologist.  

Emily is always giving hugs and kisses. Yes, she has big temper tantrums, but she generally has an exceptionally happy demeanor. She has the biggest belly laugh you ever heard. She loves things with wheels, musicals, bowling, baseball, swimming, ice cream, family and friends. Her vision and hearing are sharp and her memory even more so. She never forgets a face or a route to get somewhere. She adores riding in the car and could do it for hours on end. She loves to cuddle. She likes to tease and play jokes on people. She writes “Em” on everything she owns. She squirrels away things in her many backpacks, stuffing them beyond belief. She enjoys shredding paper. She flaps her arms when she’s happy. She cries at sad music and laughs at slapstick comedy. She’s the most loving, forgiving person I know. 

That is what I have. I have Emily.

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This Boston Marathon Survivor Is Returning to Running for the First Time Since the Bombs Went Off

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This is what courage looks like.

Roseann Sdoia lost her leg to injuries sustained in the Boston Marathon bombing on April 15th, 2013, according to her website. The Bostonian had to undergo several surgeries to remove shrapnel from her abdomen and legs and eventually had her right leg amputated above the knee.

That was a moment in time, and you just have to keep moving forward,” Sdoia says in the video below.

After a grueling physical and emotional recovery, Sdoia has made a return to running. Last Sunday, Sdoia completed the Lisa’s Lung Cancer Awareness 5K in Lowell, Massachusetts, WCVB 5 News reported.

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Photo Courtesy of Dear World: Boston Marathon

Sdoia was never a marathon runner — she was a spectator when the bomb went off — but she enjoyed running three to five miles a day before her amputation, according to her website. She’s challenged herself to run again in the hopes of inspiring others in similar situations to never give up, and her journey is being turned into a new documentary called, “Who Says Roseann Can’t Run.”

The 5k on Sunday was the first distance run Sdoia has attempted since the bombing, according to WCVB 5 News. She began training in April, a year after the explosion, with the help of Jothy Rosenberg, fellow amputee and founder of the Who Says I Can’t foundation.

“It’s something that I think I want to get back to, but it’s definitely a love-hate relationship,” Sdoia told the outlet. “It’s not easy and so there is a lot of anxiousness.”

Watch Sdoia’s inspiring return to running in the video below: 

h/t Reddit Uplifting News

For more information visit the Roseann Sdoia Recovery and Support Facebook page.

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This Man Turned the Streets of London Into a Giant Poppy to Honor His Fellow Veterans

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Former British Marine Ben McBean has found a special way to commemorate his fellow veterans.

McBean, 27, lost a leg and arm to a land mine while serving in Afghanistan in 2008, according to his website. Just one year later, he ran his first London Marathon.

Recently, to raise money for a veteran’s charity and to celebrate those who have served, McBean ran 31 miles around London in the shape of a red poppy. He used a GPS tracker on his phone to mark his progress and encouraged others to donate and help fill out the poppy by running some of the streets inside the flower outline, according to the YouTube video below.

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McBean, who currently works as an entrepreneur and motivational speaker, will have all the donations he raises matched up to $100,000 by Vodafone, a British phone company. All proceeds will benefit the Royal British Legion’s Poppy Appeal, a U.K. veterans’ charity, according to NBC Today.

The poppy is the charity’s symbol in commemoration of the flowers growing in the battlefields of the First World War. British citizens where them on Nov. 11, their country’s Remembrance Day.

When you’re feeling down, when you’re feeling low, when you’ve had enough,” McBean says in the video below, “don’t give up.”

Watch the video below to see Ben McBean turn London into a giant poppy:

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When a Little Boy Talked to My Grown-Up Son in Walmart

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My son, Casey, and I just had the pleasure of meeting a beautiful soul. We were in Walmart in Vinita, Oklahoma, and, as is our policy, we were making a beeline to the toy section first because Casey does his shopping and then is happy to ride along while I do mine.

As we neared the toy aisle I noticed a young boy maybe 9 or 10 years old come out of the toy section. We passed him, but as we turned into the aisle I noticed in my peripheral vision that he’d turned around and was behind us.

Casey was looking into each aisle as we passed, giving me directions: “Nope, not this one, keep going… Oh, there’s the Thomas the Train aisle, keep going… Turn here, Momma, there’s the Air Hog aisle!”

We turned in and right behind us was the boy. He immediately struck up a conversation with Casey. Well, it was pretty much a one-sided conversation on his part, but you couldn’t tell that he noticed.

“Hi. Do you like Air Hogs?”

“Yeah.”

“Me too! This one right here is so cool. You can hold it in your hand, and it will take off and go all the way to the ceiling. Do you like this one?”

“Yeah.”

“Or maybe this one; this one lights up!”

“Yeah. Mom, I wanna four-wheeler.”

I tell Casey to introduce himself, and he sticks out his hand and says, “Hi, my name’s Casey.”

The boy’s name was Carter, and he proceeded to educate Casey on all the wondrous things he could do with the amazing (and thankfully inexpensive) four-wheeler. As he chatted away I stood back and watched. Occasionally he would pose a question to which the reply was always, “Yeah,” but the lack of response didn’t deter him; he simply chatted with Casey as a friend.

As I stood there watching I couldn’t help but wish his mother would come looking for him. Not because I wanted the moment to end but because I wanted to meet the person who raised such a boy — a boy who didn’t only see a wheelchair. It never seemed to even cross his mind to question the chair equipped with the rather bulky looking homemade shopping cart on its front of it. Nor did he only see a disability; he didn’t question why a grown man would have to ask his mom to buy him a toy four-wheeler; he just accepted Casey as another Air Hog enthusiast. And it was beautiful!

I wanted to thank his momma for the gifts she has given her son — the gift of a pure heart, of acceptance, of graciousness, but apparently she also raised him to be trustworthy because no one came looking to see what mischief he might have gotten into.

As they wound down their conversation, I thanked Carter for assisting us in what would have been a hard decision without all his guidance.

“Sure, anytime,” he said, as if he would be available next time as well. Then, “Bye Casey.”

“Bye,” Casey responded with a quick wave. Then to me, “Momma, I’m gonna need some new batteries for this awesome four-wheeler!”

Young adult man walking down gravel road
I looked back as we rounded the corner and there Carter stood, smiling at Casey — not at me, but at my son — the smile of a beautiful soul.

…It was a good day!

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A Letter to the Me Who Was Terrified of Our Diagnosis

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sisters smiling at each other Dear Past Me,

You’re a mother of two beautiful little girls. They’re kind and silly and happy. People tell you how smart they are. In restaurants, strangers stop you to comment on their polite behavior. And with each compliment, I see you. You soak the praise in. You relish in its glory. You pat yourself on the back, and you should. Live in the beauty of these kind words each day, because they’re true.

As I write you this letter, you’re sitting in a hospital exam room patiently waiting for the neurologist and a possible diagnosis for your youngest daughter.

And since I’m the future you, I know what’s about to happen. Before the doctor enters and gives you news that will forever change your life, I want to offer you some advice.

1. It’s OK to cry. In fact, it’s more than OK. Your grief isn’t something to be ashamed of. It isn’t something you should hide. Cry in the car on your way to work. Cry in the shower. Cry into your pillow at night. Give yourself one whole day or two to do nothing but cry, and then, never spend an entirety of another day only crying. Because if you do, you’ll miss out on all the beauty around you, and there’s so much beauty, so much love, so much laughter and so much happiness.

2. Surround yourself with positive and supportive people.  This is easy, because the not-so-supportive people tend to voluntarily weed themselves out rather quickly. Finding other mothers who are going through a similar situation is a plus. Finding people who sincerely care is an added bonus. If you find both, you’re blessed.

3. You will make mistakes. Embrace this. Accept it. Learn from it. And move on. This is one truth about parenthood… no one is perfect. Being a parent of a typical child or a child with special needs doesn’t change this fact.

4. Don’t be afraid to ask questions and search for answers. Despite what other people will tell you: Google, Google and Google. Write down all the questions you have, no matter how bizarre.  You aren’t at the doctor’s office to make friends. You are there to learn and to help your child. However, don’t let your quest for knowledge consume you. Balance is key.

5. Try not to compare. This is easier said than done. With each “Look who’s standing!” photo and every “My baby is walking!” video, your heart will ache. Remember: comparison only leads to hurt and anger. And there’s no room for those two things in the beautiful life you’re leading. Focus on all the amazing qualities and skills your daughter has. I guarantee you that list will be much longer and more important than the list of things she cannot do.

6. Because of the diagnosis you’re about to receive, you’ll become a much different and a much better person. And since I am you, I know you don’t believe this right now, but it’s true. From this moment on, you’ll look at the world in a slightly different way: with a little more strength, with a lot more determination and with an enormous amount of hope.

In a moment, the doctor will tell you your child is not completely OK — that she will face a lifetime of possible struggles, delays and hospital visits. A lifetime of differences.

Stay strong, keep positive and believe in yourself and your child.

But, more than anything, when the doctor is done and you walk out of that exam room, I want you to re-read the very first paragraph of this letter.

Read it when you sit at the doctor’s office anxiously awaiting results. When your heart is heavy from worry and your mind is bogged down by one too many Google searches, read it. Read it during moments of happiness and times of tears. Breathe it in until your lungs are filled. Dance in it. Swim in it. Carry it with you every step of the way.

Because, guess what? Not one part of that first paragraph ever changes.  Diagnosis or not, you’re still a mother of two beautiful, kind, silly and happy little girls. And that’s what really matters. That’s the real beauty of it all.

Love,
Ali (aka the Future You)

P.S. Have I told you lately just how incredibly lucky you are?

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Deaf Mom and Her Son Completely Crush Usher Dance Routine

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Mark Villaver’s mom can’t hear the music in the video below. But she sure can feel the beat.

Villaver, a professional dancer who’s performed behind stars like Taylor Swift and Ariana Grande, posted a clip of him and his mom, Emilia, dancing to Usher’s “She Came to Give It to You” in mid-October.

“Mom, you want to dance?” he asks in the video. Her answer is an ecstatic “yes.”

Around the 0:32 mark, they break it down. Like mother, like son.

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