I Didn’t Feel Grief Over My Children’s Autism Diagnoses, but I Did Feel This

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I never experienced grief when my children were diagnosed on the spectrum. I experienced relief, and I experienced anger that I wasn’t listened to sooner. I experienced sadness for the difficulties my son would face, and I experienced panic over how my children would cope when I’m no longer here.

I also felt intense resentment for anyone who asked questions and made statements born of sheer ignorance.

I’m sure you’ve heard a few of these, too:

“So they can grow out of that, right?”

“What’s his special talent? I heard ‘they’ all have one!”

“He’s fine, they are over-diagnosing these days!”

“Was it the vaccines? Many parents say it is, you know?” (This was from a nurse who was about to vaccinate him with his preschool booster.)

“What’s wrong with his legs?” (When my son was out in his major buggy.)

“Don’t let him hit you! I wouldn’t have that sh*t.”

“Take his iPad away, he’ll learn.”

“Discipline! That’s all he needs.”

“Diet, it’s all about diet. The gluten-free/carb-free diet worked on Jenny McCarthy’s son.”

“Sip water from the empty shell of a giant African land snail.”

“He just needs to interact with other kids, he’ll learn.”

“Make him go to birthday parties! He has to.”

“He’ll eat it if he’s hungry.”

“Get his metals tested.”

“Leave him to cry. He will fall asleep.”

“So, you won’t be having any more kids, right? I don’t think you should…”

“It’s a sickness, illness, disease…”

“You’re not brave enough to try and heal him. He can be recovered!”

Those are the ones I can remember. There are more, I’m sure. Some were intentionally hurtful, some were well-meaning and all raised a resentment in me that would make me want to smash someone’s face in.

As parents, we put up with that. We also cope with seeing our child have meltdowns; we get hit and spat at. Sometimes we cry, we run out of the room and cry through sheer frustration because we can’t work out what our baby wants.

But let’s look at that again.

Our children try to cope with meltdowns and get so frustrated, they hit out and spit at the one person they know will never leave them. Sometimes our children can’t express what they need; they can’t make us see. They watch us run out with tears in our eyes, and they feel what we feel.

You see, you’re in this together with your child. No one knows better than your child what you’re feeling. They know because they feel it tenfold.

I’ve learned that signing is instant. If my children can’t express what they desperately need to communicate, we sign. If they’re melting down, I stand back because I know a touch can feel like an electric shock. Unless they’re self-injurious or in danger of running into the road, I don’t touch them. I’ve learned to take a deep breath and count to 10, even if I have to jam my fingers in my ears to do this.

That doesn’t mean I don’t experience frustration. Try witnessing your child’s meltdown while feeling a meltdown yourself. Try coping with your child screaming in excitement when you have sensory overload.

I don’t pretend to know everything, but I do my best, and so far I’ve done pretty well.

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2 Words That Describe Being a Parent of a Medically Complicated Child

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Four nights ago, I sat in my daughter’s hospital room trying to rock her to sleep. She had just gone through three different tests and six hours of anesthesia.

My daughter doesn’t have cancer or a life-threatening illness, but she’s medically complicated. Medically complicated is the term doctors use when your child has a lot of medical problems. They use it when they see something is wrong, but they don’t know exactly what.

We spend a lot of time in and out of hospitals, doctor’s offices and therapy appointments. We worry a lot about about her because she has plenty of symptoms and several diagnoses, but there’s no one thing that explains all of it.

I second-guess myself every day and wonder if we’re doing all we possibly can for her. But at the same time, I wonder if we’re doing too much. Are the tests we let the doctors run worth it? Will they actually find something this time? Should we just stop and hope things will eventually get better? It’s hard to know, and these are the thoughts that plague me every day. What is the right choice?

As a parent, you just want to do the absolute best for your child. Sometimes that means figuring out what’s wrong and fighting for them; other times it means waiting things out. While I’m not sure if there’s really a “right” answer, there will always be that voice in the back of my head asking, “But is it enough? Are you doing enough?”

We sat there in the pre-op room, our nerves all over the place, waiting for them to take our daughter back. The nurse asked us to list all the times she’s been under anesthesia. I paused. My daughter had been under so many times I had forgotten. I wondered if that made me a bad mom. How does one lose track of something like this? I named all the times I could remember: surgeries, a laryngoscope, multiple endoscopies and more.

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Later, we all walked back to the operating room where they preceded to try and put her under. Daddy was holding her, and she was fighting the mask that would put her to sleep. After what seemed like an eternity, she was asleep, and they took her from our arms. The doctor told us to give her one last kiss, and it took everything in me not to openly weep.

Throughout the afternoon, I had flashbacks of all her other hospital stays. All the other times where they took her from me to put her under. The one that stays with me the most is the time they did two surgeries at once. She was only three months old, and giving up control of my sweet baby to those doctors and nurses is something I will never ever forget.

If I had the words to describe what it feels like to be a parent to a medically complicated child, I would say that it feels numbing. Numbing because you’ve been through so many procedures, so many hospital stays and so many surgeries that you just start to go through the motions. There’s no time to cry and no time to really let yourself process it. You just do what you have to do.

I wouldn’t only describe it as numbing, though. I think I would also describe it as inspiring. Inspiring because of all my daughter has made it through. Inspiring because of all I’ve made it through. Inspiring because of all the hard work my daughter puts into just living life. And last, but not least, inspiring because of the few great and far in between doctors, therapists and nurses who have changed our lives.

While there are good days and bad days, I’d never wish for a different child. I wish I could take away the hardships and everything she’s been through. I wish it had been different for her, but I pray with each passing day that things will change, and I thank God for the blessing of my little girl.

As I walked into the hospital the next night to go pick up my daughter from her sleep study, I thanked God that her eighth hospital stay was about to come to a close. I breathed a sigh of relief and prayed that maybe, just maybe, this would be the last time.

Follow this journey at Singing Through the Rain.

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To the Mom-to-Be at the Store Giving Us a Look I Know So Well

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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.

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When Loved Ones Disappear Because Your Child Is Sick

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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.

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What It’s Like to Be Known as ‘the Girl Whose Stomach Exploded’

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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.

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12 Things People Who Stutter Are Tired of Hearing

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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.  

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