4 Ways My Life Changed When My Brother Was Diagnosed With a Life-Threatening Illness

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Many of us have heard this cliche before: being diagnosed or having a loved one diagnosed with a life-threatening illness changes your life. There are movies made about it. There are books written about it and blog posts about the little acts of kindness, the exciting steps toward progress and the new perspective you have.

This story — my story — is exactly like some others: optimistic, cliche, entirely true and entirely unique. It’s a story you might read by fluttering over the words, maybe shed a tear or two and then go back to living your life the way you did before. Because however touching, however moving you may find this story to be, it’s always going to be just that: a story.

Prior to March 20, 2009, they were “just stories” to me, too.

When my now-6-year-old brother, Timmy, was born, I was happy. When he was diagnosed a few months later (he has three diagnoses: agenesis of the corpus callosum, optic nerve hypoplasia and mitochondrial myopathy), I was confused but still happy. There was no epiphany where I gained my new insights on life and death. There was no movie moment where I suddenly saw the world in a new light. My life changed gradually. I was 10 years old when Timmy was born; I am now 17. These are four of the many ways in which Timmy has changed my life.

1. Having normal conversations in funny voices, enunciating words like “Oh yeah” and making sound effects for everything are part of my daily routine.

These things just became normal for us. Things we used to never think about and now do every day. Things that may seem strange to other people but to us are just routine. A routine to keep Timmy happy.

2. It is easier to deal with everything else.

When each and every day I have to watch my brother work hard to do things that come naturally to me. When deep down I know his condition is degenerative and no matter how much progress he makes, there is no cure. When, in other words, it’s a real possibility I will have to watch my brother die, and I can’t help him, and the only way to cope is by willful ignorance — everything else in life feels so much smaller. I used to want to live in a bigger house and for my family to have more money. But no amount of money can buy a cure, so what’s the point?  

3. I became used to just “smiling and nodding” whenever people try to pretend they understand. But when I say, “Thank you,” I mean it.

Any kind words are appreciated. Any acknowledgment of what my family goes through each day is appreciated. But sometimes people express themselves in ways they think are profound and insightful, when really they’re just insensitive. It’s not worth it to fight or argue, so as I learned from my mother, just smile and nod and say thank you. Because at least they tried, and I can appreciate that.

4. I’m isolated from everyone else, but I’m OK with that.

It’s hard because no one really “gets” how it is. My family had to adapt in many ways in order to accommodate for Timmy’s needs. I love Timmy, and every sacrifice I’ve had to make is totally, 100 percent worth it. For a little while I did try: I told people how hard it was, how much my life changed when Timmy came, but when it’s not your life, it’s easy to say it’ll be OK. My family became closer as a result because we are the only people who know what it’s like.

I’ve learned to deal with the pain. I know that, for the sake of the present, it’s to best focus on Timmy, on keeping him happy, on loving him and not on the fact that he’s sick.

Mary Ann and her three younger siblings in a gazebo

The Mighty wants to read more stories about siblings, whether it’s your favorite memory or a tough moment that taught you something. 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.

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RELATED VIDEOS

His Response to Those Who Made Him Feel Like a Victim to His Condition

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In a Facebook post from photographer Brandon Stanton’s wildly popular “Humans of New York” photo series, a man opened up about his Agenesis of the corpus callosum, a condition in which the structure that connects the two hemispheres of the brain is, in his case, absent.

“I have Agenesis of the Corpus Callosum. Most people have nerve bundles that connect the two hemispheres of the brain. …

Posted by Humans of New York on Thursday, July 2, 2015

 

The post reads:

I have Agenesis of the Corpus Callosum. Most people have nerve bundles that connect the two hemispheres of the brain. I don’t have those. But I don’t like to talk about it. Because when people know there is something wrong with your brain, they think you’re retarded. I had a hard time growing up. I’ve been labeled all my life. I’ve always been told that I’m learning disabled and I can’t do this and I’m not good enough to do that. And it’s hard to hear that stuff all the time without viewing yourself as a permanent victim and learning to be helpless. I’m not a victim. I have a part-time job, nice friends, and my own apartment. All I need now is a full time job and a PlayStation 4.

His answer in itself is great, as were commenters’ reactions — in an internet world that tends to be full of negativity and trolls, the responses to this post (and the number of PlayStation offers) truly blew us away. Here are just a few of our favorites:

Bro, both of my hemispheres are connected and I’m half the man you are.

“My 12-year-old brother has this. I have never heard of anyone else having it. I am so excited to show him this so he knows he too can have a comfortable life.

“It’s so lovely to hear stories from adults with ACC; my youngest son has the condition and the future feels uncertain at times. Thank you for sharing this man’s story. I hope he sees how much it means to me to read it.

“With that attitude he should have no problem finding a full-time job. I wish I had that positive spirit all the time.

“I have Agenesis of the Corpus Callosum as well as several other disorders. I’m rocking life as a single mom despite my disabilityI may be missing part of my brain, but I have a FULL life.

It’s nice to be reminded that 1) hardworking people like this man exist and 2) the Internet is capable of kindness.

Spread the Word to End the Word! You can head here to pledge to stop using the R-word. It’s a step toward creating more accepting attitudes and communities for all people.

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4 Birthday Presents I’d Love to Get as a Mom of a Child With Down Syndrome

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Today is my birthday. I’m not sure if it’s the maturity that comes with age or the fact that I’ve learned from my little guy with Down syndrome it’s not all about me, but when I’m asked the question, “What do you want for your birthday?” it’s not material things that come to mind.

In the four and a half years since my son was born, I’ve been motivated to give back, help people along in their special needs journey, and connect people who can help with organizations and people who need help. My hope is that as I continue on this journey, I will make an impact, be an influencer and drive change.

So this year, my answer to “What do you want for your birthday?” is this: about five minutes of your time to ask you to do the following:

1. Visit www.changingthefaceofbeauty.org and learn about inclusive advertising. Then encourage businesses you use to join the campaign. People with disabilities are the largest minority, and as a group, have significant disposable income and are brand-loyal to the companies that embrace those of different abilities.

People with disabilities, people like our loved ones, consume the same food, clothing, toys, and goods that those without disabilities consume, yet they’re often completely left out of advertising. Changing the Face of Beauty seeks to help make sure our loved ones are included in advertising. They believe if it becomes part of the norm to see people of all abilities in advertising, then it will be part of the norm to see people of all abilities included in our workplaces, too.

2. Connect with the organizations helping our loved ones. For me, those organizations are The National Down Syndrome CongressThe Trisomy 21 Program at the Children’s Hospital of PhiladelphiaThe Buddy WalkThe Montgomery County Down Syndrome Interest Group,  and The T21 Club of the Delaware Valley. These organizations can help so much in providing you resources, medical information, support and a sense of belonging.

buddy walk photo

3. Support endeavors like Dreamers Coffeehouse. This business is online right now, but it will soon become a brick-and-mortar coffeehouse that will employ individuals of all abilities. We need more people to begin businesses like these that will employ our family members with special needs and provide them with satisfying employment experiences.

We can promote the creation of new businesses like these by ensuring the success of the ones already in existence. Soon we may see this business as place to go to enjoy a great latte or cup of coffee, being served by employing our loved ones who are proud of their wonderful job.

4. Challenge your workplaces to become more inclusive. (OK, this could take more than 5 minutes.) Connect with your recruiting departments, HR and employee resource groups that focus on the differently able (many workplaces have them), and let them know it’s important our workplaces hire people of all abilities. If you’re not sure how to make this happen, there are organizations that can help. Ruh Global and the US Business Leadership Network can help create disability-confident workplaces that embrace inclusion.

This year, instead of wanting things for my birthday, I want change, change that will make the world a more inclusive place, so that as my 4-year-old grows and matures, he will find a world just as ready for him as he is for the world.

little boy in changing the face of beauty shirt

Do you have a story about your experience with disability or disease? Maybe a moment that made a big impact on you? Please send it to [email protected] and include a photo for the story, a photo of yourself and a 1-2 sentence bio. Check out our “Share Your Story” page for more about our submission guidelines.

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I Feared Her Childhood Would Be Filled With Pain. She Proved Me Wrong.

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When I was 23 years old, I stood in the corner of a little room in the Emergency Department watching nurses and technicians pin down my first child. My tiny, 2-week-old daughter. She screamed for me and I held back tears as they stuck her over and over again, searching for a vein.

We were both exhausted. I was still reeling from the news she had been born with an unnamed genetic condition, and I was trying to understand what her life would look like now. She had spent five days in intensive care, had been home for one sleepless and depleting week, and then we had to bring her to the hospital for some lab work. The stick had been bad enough, but as soon as we got home the doctor called and told us to head to the Emergency Department.

There we were, with the ED nurses calling in the NICU nurses who were holding red flashlights up to my daughter’s delicate skin, stretching it tight and straining to hit a vein again and again because the doctors couldn’t believe the lab results. I was helpless. When they finally believed the numbers, we were admitted to the Pediatric Intensive Care Unit. I sat there listening to all the foreign beeping machines, wondering if this was what my daughter’s life was going to be like. That was my lowest point. Things seemed so dark in that room.

When we finally made it home for good, the frequent trips to the hospital for lab work and imaging tests depressed me. I remembered how scared I had been as a child when I got kindergarten vaccines. I couldn’t imagine how horrible a childhood filled with frequent lab draws and tests would be. I ached just thinking about the pain that would mark my daughter’s childhood.

But I was wrong. I didn’t realize how strong my daughter would become.

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I didn’t realize by the time she was 3 years old, she would understand what a blood draw was for, and that they hurt less if you hold still quietly. I didn’t know that a Dora sticker would more than make up for the prick, and that the memory of the routine lab-draw wouldn’t make any more impression than the band-aid on her arm.

I didn’t realize for a child who was accustomed to blood draws, routine vaccinations would be a cake-walk. That when the nurse would say, “Wow! You’re sure brave!” she would give a look that said, “You’re not from around here, are you? We’ve seen a lot bigger needles, honey.”

I didn’t know that she would handle ultrasounds and office visits with the ease of a kid putting in a normal school day.

I didn’t imagine by the time she was 11, when a new phlebotomist asked if she’d ever had her blood drawn, she would roll her eyes and answer, “Umm, only a million times,” and then flash a million-dollar smile that would make everyone laugh.

I had no way of knowing how far that kind of strength would carry her. Now, at age 11, she isn’t the most skilled girl on her soccer team, but the hardest working. She has ankles that turn every game, but keeps getting back up. Her reflexes are slow, but a ball to the face wouldn’t convince her to sit it out. She cries almost every week at therapies, but never asks to stop going and never stops trying.

Last year, we found out on top of kidney failure and liver disease, she was also losing her vision. It didn’t take long before she wanted to know how soon she could learn Braille and if this meant she could get a guide dog.

Then, I didn’t know how wrong I was. My daughter’s childhood wasn’t filled with pain, at least not much. On our good days it was filled with all the brightness and beauty of any other childhood: trips to the zoo, bedtime stories, birthday cakes and building snowmen. And on our hard days and hard days did come it was filled with tenacity, courage and the joy of overcoming. Or at least the joy of meeting challenges bravely and never backing down.

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One Easy Way to Better Understand Sensory Processing Disorder

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One of the biggest obstacles I face as the mom of a child with sensory processing disorder (SPD) is most people simply don’t understand what it’s like for my daughter to navigate through the challenges that everyday life throws at her. They also don’t know what it’s like to be her mother and have to consider her needs in every decision I make on a daily basis. Things most people don’t think about like trips to the grocery store have to be planned with the most careful precision.

Most people think my parenting style is overprotective or neurotic even when I tell them my daughter has SPD. I actually don’t want us to leave the party early, but she can’t take the volume of the music being played.

I also used to run home for her nap time because the only place she can sleep is in her bedroom with all natural light blocked out. “Skip her nap” is what most people say, not knowing doing so would overstimulate her so much that the entire rest of the day would consist of one meltdown after the other. She would also have problems falling asleep at night and would wake up at least an hour early the following day.

Don’t get me wrong, I know most people mean well. There is little known about SPD and most people simply don’t understand what it’s like to have it or be a parent of someone who has it.

In the everyday hustle of life as a parent, even I sometimes find myself dismissing the challenges my daughter goes through. Like when I get aggravated because we’re running late for school, and she wants to change her pants because they feel funny. Or when she begs me for weeks to take her to Chuck E. Cheese and after driving all the way there, she won’t enter the building because she can hear how noisy it is from the outside.

Every day I wake up and tell myself today is going to be the day when I have more patience. I’m going to respect her sensitivities and make her feel good about herself even though so many things can be challenging for her. And yet, every day life gets in the way, and I find myself frustrated with her and hearing her say, “Mommy, I’m sorry,” about things I know she simply can’t control. The fact of the matter is, unless you can truly feel what a child with SPD is feeling, you can’t understand it even when they’re your own child. So how can I get annoyed with people who don’t understand our situation when even I can’t understand it most of the time?

I propose you all try this little exercise. Think about your quirkiest habits: things you avoid, things you seek out and those little things most people wouldn’t notice but drive you up a wall. Once you’ve thought about it, think about how those things make you feel physically, mentally and emotionally.

I’ll go first: I hate turtlenecks. I like the way they look. I even get jealous when I see people wear them because I wish I could, but I hate them. I have tried countless times to wear them, but no matter what, I just can’t. How do they make me feel? When I wear them, I feel like I can’t breathe. I start to sweat, actually. I can’t focus on anything else but that piece of material around my neck, and the longer I have it on, the tighter it feels. One time, I was driving with a turtleneck on and I actually had to pull over because the feeling of it made me so anxious I thought I was going to pass out.

The same goes for fluorescent lighting. It gives me such a bad a headache that I feel like I’m going to get sick. I sometimes wear sunglasses indoors. The brighter the light, the sicker I feel. And I hate rides. Any and all types of rides. That stomach drop you feel that most people crave. The rush of adrenaline. Just thinking about it makes me feel woozy. So I never went to amusement parks. I just didn’t want to hear one more person tell me to “just try it, it’s not too fast.” No, thank you. I will happily stand at the bottom and hold everyone’s stuff while you enjoy that awful, nauseating feeling most people call an “adrenaline rush.”

While you might be reading and laughing about this,  just sitting here and conjuring up the feelings over my “quirks” is literally making me feel dizzy and sick to my stomach. Now, as you think about your own quirks and sensitivities, think about what it would be like to wake up every day and have every little part of  life making you feel that way: the drip of the coffeepot, the clothes you’re wearing, the smell of breakfast cooking. All day, every day. Everything you encounter makes you feel as awful as turtlenecks, bright lights and roller coasters make me feel. Luckily for me, I can avoid those things if I want to (and I do!). But for my little girl, the things that make her feel this way can’t be avoided. And that’s what it’s like to have SPD or at least that’s what I believe what it’s like to have it.

So the next time I lose my patience with her, I think I’m going to lock myself in a brightly lit room wearing a turtleneck, then I’m going to give her a hug and tell her that I love her just the way she is.

young girl smiling

Follow this journey on My Sensational Girl.

The Mighty is asking the following: What’s one commonly held opinion within the community surrounding your disability and/or disease (or a loved one’s) that doesn’t resonate with you? 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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Teen With Asperger's Syndrome Opts to Educate Kids Who Beat Him

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Gavin Stone is a teenager with a lot of compassion. According to his mother’s viral Facebook post, after a group of kids surrounded and beat her son on Friday, June 26, Stone opted not to press charges and instead teach his attackers a valuable lesson.

Stone, who was diagnosed with Asperger’s syndrome and ADHD when he was 3 years old, has struggled to find longtime friends. He “can appear rude, impatient, ‘weird,’ detached, or uninterested, but this is not intentional,” his mom, Cortnie Stone, wrote on Facebook. After his alleged attack, Gavin Stone suffered a mild concussion, bruised esophagus, fractured nose and black eye.

 

We found out that Gavin had Asperger’s & ADHD when he was 3 yrs old, and growing up, we’ve had as many wonderful times…

Posted by Cortnie Stone on Tuesday, June 30, 2015

 

 

The teenager did not press charges — he instead requested his attackers’ “community service be disability related, that they write a paper on Asperger’s, and that they watch a 20 min video statement he taped while their families were present so they could see the damage they did and hear the event from his perspective,” according to Cortnie Stone’s Facebook post.

A family friend, Susan Moffatt, shared that post (with permission), adding some of her own commentary. Moffatt’s post has been shared more than 140,000 times. “If I get through to just one person tonight that THIS IS NOT OK then I have accomplished my goal with this post,” Moffatt wrote. She added:

If you are reading this, I hope you talk to your teens, tell them about disabilities you can’t see, teach them to be tolerant of people that are different, teach them that if they continuously see someone alone that maybe it is not their choice to be alone, remind them to ask questions first and get to know one another.

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