We shared a moment today, soon-to-be mama.

You were coming down the grocery store aisle, glowing and beautiful, and probably a couple months away from being a mother, possibly for the first time. We locked eyes for a second, and I couldn’t help but glance at your belly and smile. At about that time, you looked at my little boy in the race-car shopping cart. The moment you glanced down, probably to smile at my son, my previously quiet boy started to yell and flap with wide eyes at the toy giraffe in his hands.

This caught you off guard, and you diverted your gaze quickly. You barely caught my eyes again with an uneasy smile as you walked past, but I could see it. I know it so well, you see. Fear — not of me or my son, but for yourself, for your future child.

I wish I could have reached across that awkward moment and said this:

Please, don’t be afraid. There is an epidemic, but not in the way people think, not of the big A. It’s an epidemic of fear and misunderstanding, and it’s spreading like wildfire. I suffered from the disease personally. The fear of doing something wrong that would affect my child, the fear of having a child that wasn’t “typical,” the fear of my life not turning out how I’d always planned it.

Dear future mom — being afraid of it, and even trying my best to prevent it, couldn’t keep it from happening. All it succeeded in doing was nearly driving me mad.

I wish I had said:

I’m the lucky one for having this special boy. He is the most interesting, beautifully minded, amazing person I’ve ever met. I wouldn’t trade this experience, being his mother, for anything. I’ve met wonderful, inspiring people, seen love work in ways I could’ve never imagined, and I’ve witnessed miracles every day. I was forced to grow in ways I thought I didn’t even need to. I realized I was so much stronger than I ever believed myself to be. None of this would’ve happened if one of my biggest fears — and truly it was — hadn’t come true.

I don’t know what the future holds for you, mama, but I can tell you this :

if your baby does turn out to be anything like my son, you will have the most painfully beautiful life. You will feel blessed and in awe of your child and yourself and the world. You will probably cry lots of tears of frustration, but you’ll cry even more tears of joy. You will be OK. I promise.

Most of all, you’ll be the second luckiest mother in the whole world.

The Mighty is asking the following: Write a letter to anyone you wish had a better understanding of your experience with disability and/or disease. 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.


Parenting a healthy child totally changes your social life. You spend time and energy caring for your child. When events come up that involve late nights, you weigh the pros and cons of what that evening of fun will look like the next day at sunrise when your excited child runs out of bed. Your social life changes as you find friends who also have children, and you discuss diaper consistency, the latest bottles and the coolest new shows on Disney Channel.

This was the image I had in my mind. Even though I was going to be a parent, I thought I’d still have a social life. I was so incredibly wrong about what I thought life would look like.

My son, Von, came in to the world early, and I often thought he was in a hurry to go nowhere. He stayed in the NICU for weeks. We measured each poopy diaper to the gram and counted every single milliliter of milk he drank. Every single thing he did was put on a chart, and my early weeks of motherhood consisted of beeping machines, alarms and sleepless nights wondering when he’d come home. I felt so lonely then. I wanted to take him home. I thought if I took him home, it could be like I imagined. I thought I could put him in those tiny little outfits, and cuddle him to sleep while I watched my favorite shows. I imagined coffee dates with friends during my maternity leave, with them holding him.

When Von finally came home, he was still so sick that we didn’t go anywhere. The friends I thought I had disappeared, and I wasn’t sure why they left.

I’ve thought of all the reasons a friendship that spanned years would suddenly disappear after Von’s diagnosis. I wondered why all the people in our lives scattered. I knew when we had children, relationships would change. However, I didn’t realize when you have a sick child, it’s sort of like wearing a scarlett letter in the 1700s. The whispers, and the assumptions and blame about what I must have done wrong during pregnancy. In fact, a woman I just met told me Von wouldn’t be so sick had I not eaten all those GMOs during pregnancy. I had friends suggest it was likely the medication I took while I was pregnant. In truth, we’ve never found the answer, and no matter what I hear about why he could be sick, it changes nothing.

I thought my husband and I could at least count on our family. Unfortunately, that assumption was wrong. Family struggled to understand the magnitude of his illness, and I believe many still have no idea how hard we fight. Others just don’t care to check in on Von’s development.

It was hard to arrange play dates when I constantly had to remind them we couldn’t be around other sick children. Von is so fragile, even happy events for most are stressful for our family. We’ve never attended our extended family’s Christmas party because children who attend are often sick. Our holidays are quiet, and often the three of us, or my parents and sibling. It’s not at all how I imagined life would be.

I’m trying hard to find joy in the pain. It’s been incredibly difficult. Our lives are so different. As the holidays get closer, I worry about the germs and what they will do to Von. I feel sad that Von can’t enjoy the basic things other children do, and I struggle to find ways to make this season joyful for him. He’ll hopefully go trick-or-treating, but only to a few homes because there are far too many germs this time of year, and the wind is hard on his asthma. We’ll go to Thanksgiving, but only for a short time because he still struggles around large groups, and this Christmas will hopefully be the first time we can attend a larger family function. It’s hard knowing we have to rely on so many other people to keep their kids home if they’re sick to avoid exposing Von to serious illness. This year, I’m putting my heart in God and hoping he will keep Von well and allow him to enjoy the season instead of fear it. The holidays are a magical time for most, and they scare me to pieces.

I pray for a day when our lives are less isolated, and when people will no longer fear Von’s disease. I pray for a society that isn’t scared of embracing children with serious illness. We get a lot of praise online and through social media. However, in our daily lives, most of us are alone, and most of us really need friends to help us get out of this darkness. If you’re reading this and you have a friend with a sick child, don’t be afraid to say the wrong things. Just reaching out and saying something is better than saying nothing at all.

Follow this journey on Von’s Super Hero Facebook page.

The Mighty is asking the following: What’s one thing people might not know about your experience with disability and/or disease, 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 Share Your Story page for more about our submission guidelines.

When I tell people my “stomach exploded,” people don’t really know what to make of it.

Apparently, Kathie Lee Gifford and Hoda Kotb did. I was thrilled; I never thought I’d be featured on the “Today” show.

As a teen, I was merely thrilled to get my very first college acceptance letter. I couldn’t believe I had gotten into the musical theatre program at University of Michigan. All my life, I had dreamed of pursuing a career in theatre, on Broadway, in every musical possible — and this was my golden ticket. I didn’t realize in two weeks my world would drastically change forever.

It was the night of our family Passover Seder — a favorite holiday of mine. As always, there were 30 joyous and over-stuffed friends and family surrounding us. As always, we told the Passover story with our mouths full of laughter, song, brisket and kugel. As always, I felt snuggly embraced by the love and warmth of the people in my life and the safety of a time-honored family tradition. And then I felt something that I had never experienced before.

A stomach ache. A simple stomach ache that escalated into excruciating pain, never ceasing and only growing worse for two entire days. As the pain grew more and more intense, my father drove me to the emergency room for a routine X-ray, although my physician reassured us that it was only gas. On the way to the hospital, (as my mother has told me) my cheeks suddenly puffed up like a chipmunk, and I collapsed as soon as I tried to get out of the car. Then I don’t remember anything else but the physical sensations of awful pain. All I remember is gradually waking up about six months later.

I awoke as a newborn does, discovering sensations around her for the first time. Lying flat in a hospital bed, I only had a view of the ceiling for my first weeks coming out of a coma. I reoriented myself with the world of sound, sight and those I loved, who were all waiting for me when I awoke.

Unable to talk, sit up or control my trembling hands, a doctor — who seemed to know me very well at this point — explained as gently as he could about happened to me. Apparently, my stomach exploded due to an unforeseen blood clot. So much pressure had built up inside of me that my stomach actually burst to the ceiling in the operating room. Both of my lungs collapsed, I needed 122 units of blood and I was even read my last rites. I had no stomach. I couldn’t eat or drink, and the doctor didn’t know when or if I would ever be able to again. What do you say to that?

I asked why this happened to my family, to my doctors and to myself. Why was I blessed with such luck and blessings my entire life only to become a helpless victim of circumstances?

Then I rethought that word — victim. What makes a victim? Certainly, I had control over my own mindset, my passions, my thoughts and my dreams. That was my turning point. I stopped asking, “Why me?” and started asking myself, “Why not?”

You can call it bad luck that I spent six of the past 10 years unable to eat or drink. Being quite crafty as an artist and performer, I decided to make my own luck. My life was too full to suddenly resign to being a “patient” or a “victim” for the rest of my life.

Although my mother and everyone else questioned whether it was too soon to mount three of my own art shows, star in musicals, teach nursery school, learn karate, start my own chocolate business and remain as vital internally as I once felt on the inside and outside, I went past my fear and nerves. I took a risk based on the passion I still felt in my heart.

Eight years after my coma, I was finally headed towards a life of medical stability. I learned through experience that things can heal with time, and that it’s not always the prettiest or easiest way. It was an extremely difficult journey, trying to make sense of the bizarre story I was now the lead character in.

My story was apparently something the “Today” show was extremely interested in. My anatomical circumstances landed me on Kathie Lee Gifford and Hoda Kotb’s lovable hour of chat on NBC, and all at once, I was out there in the world.

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Kathie Lee and David Friedman wrote a beautiful song for me called “Still Alive,” an upbeat, joyful testament to my positive attitude throughout 27 surgeries.

I received hundreds of emails and friend requests all at once. Suddenly, everyone wanted to know more about the “girl whose stomach exploded.” How did I survive without a stomach? How did I sustain myself if I couldn’t eat or drink for years? Had this ever happened to anyone before?

No, it hadn’t. It was that bizarre. But as bizarre as my story was, I was about to show them the person behind the “medical miracle.”

“Still Alive” became the final song of my one-woman musical, “Gutless & Grateful.” I lost my stomach but gained a story. And now I’m taking my show across the country, inspiring others with the bizarre reality that anything is possibility with a bit of resilience.

As much as I love being bizarre, I do wish my life were more normal at times. I still think about my old life and the feeling that anything was possible. But everything and anything became possible once I was willing to wander from my teenage fantasies and take on this new life on proudly. I can’t be 18 again, but, lucky for me, I can be the best 28 I can. This isn’t the path I planned for myself, but does anyone’s life ever work out exactly how they plan it?

My stomach exploded. My world changed in an instant. My life took a detour as all lives do. So I made the best of it, and now I have my detour to thank for all the gifts in my life. I’m Gutless, but I am oh so Grateful.

And honestly? There’s nothing bizarre about that.

Amy Oestreicher is currently touring the country with her musical, “Gutless & Grateful,” which was inspired by her appearance on the “Today” show. You can learn more about the musical here. And learn more about the specialized version she performs for patients and those recovering from illnesses here.

People who stutter make up one percent of the world’s population, meaning there are 70 million people around the world who stutter, according to the Stuttering Foundation.

People who don’t stutter often have a hard time understanding the complexities of stuttering. So even loved ones, while they may mean well, often say the wrong thing.

The Mighty teamed up with The Stuttering Foundation to ask our readers what is something they wish people would stop saying to them.

This is what they had to say:

1. “‘‘Slow down and breathe.’ (If it was that easy, I wouldn’t stutter!)” —  Lisa Lott

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2. ‘I know how you feel.’ No you don’t. You speak perfectly fine.” — Shelby Marie Smith

3. ‘Spit it out’ or ‘Did I stutter?’” — Tyler Crew

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4. ‘Shouldn’t you have outgrown that stutter?’ [It] boils my blood every time.” — Heather Price

5. ‘Oh, it’s OK. There’s no need to be nervous.’” — Pamela Mertz

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6. I wish people would understand that what I have to say is important, and [it’s] not any less important just because it wasn’t said fluently.” — Rhiannon Karlsen

7. “‘Take your time’ and ‘Start over, it’s fine.’” — Memvis Hale II

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8. ‘Just skip over words that start with the letter you stutter on.’ Why didn’t I think of that? OK, I just won’t say any words that start with ‘R,’ ‘S,’ ‘L,’ or ‘W.’ Or ‘F.’ Or ‘D.’ Or ‘T.’ Or ‘B.’ Never mind I’ll just be mute.” — Laura Duggan

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9. ‘Think about what you’re going to say.’” — Ceri Harrison

10. ‘Oh, you forgot your name?’ No, I didn’t, but thanks for being so ignorant.” — Danielle Pumilia

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11. I just want to stop being mimicked. I’m very self conscious about it and repeating what I messed up makes me not want to continue talking.” — Mayra Gianella Garcia

12. ‘Relax. It’s all in your head.’” — Maya D. Wilson

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*Answers have been edited and shortened.  

It wasn’t much to say, but there he went and said it. “First steps.”

He looked about in his late 60s  — one tanned guy full of vitality, pausing from his bicycle jaunt around the beautiful South Devon seafront. We were in the middle of our end of the summer vacation, strolling along, soaking up the last rays of sunshine before the rainy season closed in. Our son, Rukai, had one hand in mine, one in my husband’s and two feet chasing each other’s shadows down the pavement in that gangly, stompy, slightly stiff-legged way all new walkers do.

Toddle, toddle. Pause. Look at shoes. Look up at me, grinning. At Dad, grinning. Toddle, toddle.

We’d been observing the boats moored in the harbor and turned to find him there — an apparition of hope perched on two wheels, uttering those two magic words:

“First steps.”

A huge smile. We all smiled back. But Rukai had more important things to do than to engage in conversation. No time, Mama. I’m practicing. He tugged us back towards the path.

Toddle, toddle.

Sweet Rukai had been missing during the past few days and was substituted by his secret ornery persona we lovingly call Captain Crabbo. He wouldn’t eat what we gave him. He didn’t want to be in the house or leave it. He didn’t want to be in the car or the swimming pool. I wasn’t allowed to dress him or help him get dressed. I couldn’t brush his teeth, peel a banana the right way, sing along with anything on TV or even breathe to his satisfaction. Yet we persevered.

With Down syndrome and its delay, the terrible twos can become an entirely new adventure. He’s going on 4. This is a long road.

All kids go through terrible twos, but for us, the longevity of this developmental stage brings with it a slew of questions: What if he has a sensory disorder? Why doesn’t he talk yet? How can I get him to control that spoon better?

For days, the sense of being overwhelmed quietly threatened like black boiling clouds that precede a hurricane. It’s the big fear. The great unknown. Ye olde “what if.”


But not today. No what if. Just what is. One older man on a bike grinning at a toddler toddling. Two male creatures on either end of the life cycle grooving in the sunshine. The timing of this encounter was impeccable.

We bid farewell to the bicycle guy, looked back at each other and smiled. Yes, these days are new. But aren’t they all?

He is 3. These are indeed first steps. There will be seconds. Twentieths. They will all come one after the other, toppling like dominos. That happy click-clacking reminds us that in order to get there we always have to start from somewhere. Tip the first block and every one thereafter will fall into its place. Still, we can’t predict precisely what that place will be. Life’s mystery.

“First steps.”

Easy does it. Every new experience we take as it comes, one foot in front of the other. Our first steps as a family. Our first steps on this unknown journey.

We walk together along the sunny seafront that keeps those crashing waves at bay.

Follow this journey on Down in Front, Please.

We’re counting down the days until Halloween at our house. My 14-year-old son, Tate, has autism, and he’s been texting me reminders about Halloween for months. Tate tells me often that Halloween is his favorite holiday. If someone told me nine or 10 years ago that would someday be true, I’d have been sure they were wrong.

Although Tate did enjoy our annual trip to the pumpkin patch, that was one of the only things he liked about Halloween. When he was small, he was terrified of the costumes hanging on racks at the stores. On Halloween, Tate’s dad took his siblings trick-or-treating while we stayed home. His older siblings had to be careful to leave their masks off until they were out of the house. He didn’t seem to understand the masks didn’t change the true identity of the person behind them. Mask off and the kids standing in the room with us were his beloved brothers and sisters. Mask on and they took on the identities of strange princesses, superheroes and ghosts.

When Tate was in an early intervention program and attended a preschool with typically developing peers, he needed to wear a costume for the school’s Halloween party. I realized it would be an invaluable learning experience for him, but I knew convincing him to wear a costume would be challenging. I had to come up with costumes for Tate that were similar to his everyday attire. For example, he was a cowboy that first year of preschool. That only required boots, a hat and a western shirt. In kindergarten, he was The Cat in The Hat. I feared he wouldn’t cooperate when I suggested we use a marker on his face, but he surprised me. It helped that Dr. Seuss was Tate’s hero at the time.

By the time he was in second or third grade, he thought Halloween was a pretty fun holiday. He loves to dress up in costume now. Two years ago, he told me he wanted to be a remote control for Halloween. I panicked because I knew I was never going to find a remote control costume, and Tate, once his mind is made up, is hard to sway. I bought some black and white felt and spent a Saturday morning with my sewing machine, and Tate had a remote control costume.

This year, my 6’3” son wants to be a skeleton. As we walk from house to house to gather the candy he will not eat, I will celebrate the progress he has made. I know eventually he will be “too old” chronologically to trick or treat, no matter his developmental age. But for at least one more year, we’re trick-or-treating with all the other kids who love Halloween. For a lot of kids it’s all about the candy, but the only candy Tate will put in his mouth are M&Ms and Hershey’s chocolate bars.

So for Tate, it’s not about the candy. It’s about the adventure. And that is huge when you live with autism.

Follow this journey on Quirks and Chaos.

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