I was 4 or 5 years old when my younger brother was diagnosed with autism. The day isn’t memorable to me, but what I do remember is the struggle to understand and explain my brother’s disability. In elementary school, my cousin’s next door neighbor saw Michael stimming and asked, to no one in particular, what was wrong with that boy? Wanting to protect him from any discussion or criticism, I lied and said he was too young to speak. The discussion ended there.

For my college entrance essay, I chose to write about Michael because I thought it would evoke sympathy and admiration from the reader. Surely the admissions officers would understand my struggles by reading about Michael running away from me or me dealing with the idea that my younger brother’s life would be so different from my own. These ideas were unjust because they didn’t show how much Michael had developed, and would continue to develop, as a result of busy days and positive attitudes. 

When I got to college, my freshman English professor asked for an essay on a world event that directly affected our lives. I decided to write about the “autism epidemic” and how it had affected my family. Again I wrote about how I felt bad for my brother and how anxious we were when he ran away. I got the essay back with a resonating question: Where was Michael in this essay?

Where was Michael in this essay? Did my professor not understand that he’d run away and wouldn’t reappear until my neighbor found him in paragraph four? Had she not read that far? Not quite. She meant my paper lacked Michael’s character and the connection we had. My claim — having a brother with autism was hard — didn’t fully communicate the love I had for my brother and the love he had for me.

Sometimes the stories we tell others are the ones we think they want to hear.

In my revision, I chose to focus on the more important parts of the essay, the parts that captured Michael’s personality and depicted our relationship as siblings who contribute to each other’s lives and support each other. This is the story I’m trying to make clearer to myself and to others. It’s what I would tell myself from the beginning, had I always recognized his innate value and had I always had faith that others would respect and love him just as my family does. 

Michael doesn’t differentiate family from friends. After my brother brought one of his friends, Brianna, to the house for the first and only time, Michael told my parents “Brianna’s coming home soon.” He asked about it for weeks and mentioned it anytime my brother’s return was brought up. Michael’s understanding was that Brianna was part of the family simply because she visited and was my brother’s friend. His perception extends beyond this occasion. When my boyfriend comes to my family’s house, I ask Michael, “Is Alex a friend or a brother?” Michael responds emphatically that Alex is a brother.

In preparation for holidays, Michael has his own unique lists. Not of gifts but rather he lists to my mom who will be in attendance. As my cousins are getting older and beginning their own families, the entire family is rarely together, but Michael remains optimistic that we will all be present. We sometimes think his fixation on everyone being there is strange, considering he usually spends most of Christmas Eve watching movies in another room. Yet he’s undeniably happy at my aunt’s house when everyone is present. Our presence is a gift he values, despite having a disability that’s characterized by a lack of social skills. This is humbling. 

Picture of michael and family

Being present is something Michael does each and every day. Currently, he’s in a day program. He goes there five days a week, attends after school programs, plays on a basketball team, works out with my dad at the gym and has at home ABA therapy three times a week. In spite of all this hard work or because of it, he’s usually in an upbeat mood. Productivity helps him thrive. It’s usually during the lulls of stay-at-home vacations that he may struggle or get upset.  

As a lazier sibling, I get to hear about or witness his busy weekends. This leads me to a long line of questioning and action. What can I do to feel fulfilled? How can I make my weekends and my life more purposeful? The thoughts have motivated me to pursue running, volunteering and searching for meaningful work. 

Michael makes me and my family laugh and smile all the time. He combs his hair and then immediately messes it up maybe because it’s uncomfortable. After he wakes up in the morning, he lists bakery items he wants my mom to buy, anticipating sweets and future holidays. He tells my aunt to go home on Thanksgiving. Everyone else has left and he wants to be alone. Michael says and acts with neither hesitation nor disdain. His motive may not be to make others laugh, but the unique ways he sometimes expresses himself are cute, brave and honest.

To make his Holy Communion in the Catholic Church, Michael had to first complete reconciliation. Confessing his sins seemed totally useless to me and my mom. We wondered what sin could he have committed. He doesn’t lie or harm others. He doesn’t steal or judge. As far we know, he’s always committing small acts of kindness like packing my dad’s bag to go to the gym or setting the table for dinner. The simple moments improve our lives.

My recognition of Michael’s incredible presence has taken time to develop, and it’s become more distinct as I get older. I’ve stopped thinking of his life as a backdrop and one that only deserves sympathy. I’ve begun to acknowledge who he really is and reflect on his positive influence on my own life and the lives of my family and friends. I’m grateful for this new perspective and for having a brother who is so pure, loving, hardworking and full of joy.

Want to end the stigma around disability? Like us on Facebook.

And sign up for what we hope will be your favorite thing to read at night.


Resting my hand on my husband’s back, I felt the fear in his clammy t-shirt. We were in the darkened ultrasound room waiting for the doctor to explain. I’d never felt this level of panic, a surge of pain, a hurt only parents can feel when they get dreaded news. There is something wrong your baby. 

Today was supposed to be such an exciting day. We were going to find out if our peanut was a boy or girl and share the news over pizza with my sisters — sausage for a girl, pepperoni for a boy. We laughed throughout the ultrasound and marveled at our baby’s activity, watching him kick and reveal his grainy little organs to the technician on the screen. I couldn’t look away when it was time for the gender reveal and found out early — pepperoni for dinner! Then the tech told us she would be right back, that the doctor had to look over our scan. We waited for an eternity. What was taking so long? He was perfect; we’d just seen all of his organs.

With each passing minute, our anxiety levels rose. The doctor came in and began the ultrasound all over again. The brain was perfect, the heart was fine, the kidneys, bladder and stomach were all normal. Then he began to explain.

“The reason we’re looking so closely is because the tech couldn’t find his left arm. It is here, but I’m afraid I have some bad news. Your son appears to be missing his left fingers.” No fingers? Small hand? Partial thumb? How could this be? Why us? This is not the lottery with the impossible odds you dream of winning.

This was it. This was the shoe we’d been waiting to fall. Here it was, our own family nightmare.  We’d been so blessed. And that’s exactly what I’d go back and tell myself if I could relive that moment. You are still so blessed and this won’t change that. Sure, this will be hard and you will be scared and some days will be harder than others, but this will also magnify your blessings and bring them to light.


This chubby, happy, healthy little baby will show you how blessed you really are. Blessings will come in all shapes and sizes, and now you’ll just be that much more cognizant when they occur.

They’ll happen that first night when your sisters instinctively feed, bathe and tuck in your toddler so you can cry alone with your husband. They’ll arrive in the hugs and love from your parents who wish they could take this hurt from you as badly as you wish to take it from your son. This lucky little fin will end up saving not only the baby with the cord wrapped four times around his neck during delivery, but maybe you as well, thanks to a repeat C-section. You’ll find comfort in the strength of your marriage and find that your husband is a more amazing father than you could have hoped for. Your colleagues will keep you busy during the last 20 weeks of your pregnancy, covering for you when you need it and distracting you along the way. Your friends will come and meet the baby, saying just the right thing and you’ll be so thankful that you’ll cry when they leave. Your son will show his cousin his lucky fin with so much pride you’ll ache at their innocence and pray he always knows this kind of acceptance. You’ll find incredible stories of amazing families and children that will inspire you and change the way you look at the world.

You’ll realize in the end that maybe we’re really the lucky ones after all. Feeling so much love and support and not taking it for granted might be the greatest blessing of all. And you’ll be reminded of this every time you pick up your cuddly, chatty, perfectly imperfect little miracle.

IMG_2738 (1)

For all of January, The Mighty is asking its readers this question: If you could go back to the day you (or a loved one) got a diagnosis, what would you tell yourself? 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.

Want to end the stigma around disability? Like us on Facebook.

And sign up for what we hope will be your favorite thing to read at night.

On this unique journey with our son, I’ve met some incredible people. I frequently refer to them as my “corner friends.”

A few weeks ago, I was talking to a dear friend and I said to her, “I remember talking to you in the corner of the classroom when our children were in first grade, and it was then I realized how special my corner friends are to me.” You see, corner friends are the people I meet sitting in the corner of the doctor’s waiting room, the corner of the hospital cafeteria, the corner of the surgery waiting room, the corner of about every place a person can travel — a church, a school or a restaurant. Because my life is often filled with overwhelming noise and news, I tend to migrate to the “corners” to detox because I often can take in no more noise or news for fear it will not be good.

The corners rarely fill up with large crowds of people. They’re a safe place to sit back to take it all in. What I’ve found along my path is that there are so many people looking for a corner friend — a friend to talk to without all of the noise and clutter. They need someone to listen without asking the “How,” “What,” and “Why” questions. They need a friend in a quiet and introspective place.

We all tend to travel and meet in the corners of life, seeking companionship in sometimes tough and painful situations. The most beautiful and genuine conversations happen in the corners of life with friends and strangers alike and always at just the perfect time. Sometimes, conversation is not shared in the corners of life because life can be sad and talking about the diagnosis of someone we love can be unbearable. Sitting next to one another in solidarity becomes all the comfort we really need.

I looked up the Webster’s definition of “corner.”

noun: a place or angle where two or more sides or edges meet.

My definition of “corner” is a bit different.

noun: a place where two or more strangers meet to start a beautiful friendship.

To my corner friends on this journey, I admire you. You are strong. You are courageous. You are warriors. You are heroes. And, above all, you get it. I know you at some point have been tucked in a corner. You’ve been wrapped in a jacket, trying to catch a quick nap, waiting to hear if your child has come out of surgery safely and successfully. You’ve been in a corner of the cafeteria trying to read a book to take your mind off things or scarf down food because you haven’t eaten all day. You’re in the corner of a classroom trying to survive when life seems unfair because your child cannot do the basics of what the other children are doing. You’re in the corner of a physician’s office trying to cope with hearing more bad news.

I get it, too. I’ve been there often. The corner is a protected place. In the end though, if we keep our eyes open, we will meet some beautiful people in the same corners. When it’s right, we will invite one another in to hear our stories. And, we will embrace one another with love, kindness and without judgment, knowing the battle we’re all fighting is not an easy one.

Cheers to courageous corner friends! I’m so thankful for all whom I’ve met on this confusing yet glorious walk of life, standing where the edges meet.


This post originally appeared on Hope.

For all of February, 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. No gesture is too small! 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.

Want to end the stigma around disability? Like us on Facebook.

And sign up for what we hope will be your favorite thing to read at night.

February 27, 2012 was the day my daughter, Lucy, was diagnosed with Rett syndrome. Almost three years have gone by since then. I remember saying to my husband a week after receiving the news, “Well, a week has passed, and we are still here.” It felt like we literally just wouldn’t make it at times in that first week. I imagine it feels this way for all parents who receive a diagnosis that will change their lives forever. What I wish I’d known that day was that yes, this was going to be a hard life for all of us, but it wasn’t going to be as hard as we first imagined.

I recently read a post by a parent who’d just received the Rett diagnosis, and they rambled off a list of questions, clearly looking for hopeful responses that might indicate their daughter will have a different path than most children with the disorder. Questions like, do all girls have seizures? Does everyone lose the ability to walk, talk and use their hands? Does every child have a rapid regression phase? I’d done the same. I wanted desperately to understand what her specific mutation meant, and I wanted someone to tell me exactly what was going to happen to her. At the time, the uncertain future was mind-numbingly heartbreaking. What is going to happen? That was all I wanted to know.

image1 (1) A lot of things both good and bad did happen. Lucy slowly lost the ability to turn the pages of her board books and then suddenly lost most her ability to functionally use her hands. Her body’s movements and muscle tone suddenly changed to the point where she couldn’t consistently sit up on her own anymore without back support. Lucy’s breathing became irregular, first with hyperventilation, then changing to breath-holding. Gradually, over the course of a year, Lucy lost five pounds and the ability to maintain proper nutrition by eating 100 percent orally and had to get a feeding tube. And last fall, out of the blue, she had her first seizure. I will never deny that these past three years have been hard. Hard for her, hard for my husband and me, and hard for all the other people who love her.

However, in spite of all of those hard things, Lucy has become the strongest, bravest, most amazing human I’ve ever known. We took Lucy to a Rett syndrome specialist who educated us on her condition. Because we became experts ourselves, Lucy was able to thrive. At 2 and a half years old, she began using a communication book called PODD. She learned to nod her head for “yes” and turn it for “no.” She’s learned to use a Tobii eye gaze device in conjunction with the PODD to communicate with us all day long. Lucy is funny and happy and loves Tinkerbell, dinosaurs, Barbies and the Avengers. She rides an adaptive tricycle, makes gorgeous finger paintings, and loves to swim and garden. She tells us when she wants to go somewhere and when she does and doesn’t like things or people or the food I’ve made for her.

What I wish I had known that first day  was that I was going to have to accept a lot of things about life I never would’ve thought possible. But, that I was also going to be constantly surprised and amazed and proud of this child we’d made, in spite of this monster I was just told was lurking inside of her. I wish I’d known that yes, it was going to be hard, but that we could and would handle it. Life was going to suck sometimes, but it was going to make us feel so grateful for the times when it didn’t and when wonderful things happened. I wish I’d known that while Lucy was going to live a life full of challenges, she was going wake up each morning and take them on like some sort of little viking warrior.

I wish I’d known that Rett syndrome would get easier and easier to accept and live with, but that also sometimes my heart would break all over again with no warning. I wish I’d known it would be like that. If I’d known that even though I’d be sad, I’d be very happy, too, it may have been a little easier. If I’d known that life would be hard but so very joyous, perhaps I would’ve felt slightly less anguished. If I’d known that Lucy, by being so brave, would force me to use every bit of strength, patience, perseverance and ingenuity I never even knew I had, I would’ve known everything was going to be OK. If she could be tough, so could I. If she could wake up and smile each morning, so would I. Back then, on February 27, 2012, I just didn’t know yet how resilient we all are.

image2 (1)

For all of January, The Mighty is asking its readers this question: If you could go back to the day you (or a loved one) got a diagnosis, what would you tell yourself? 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.

Want to end the stigma around disability? Like us on Facebook.

And sign up for what we hope will be your favorite thing to read at night.

On the day you find out that you (or a loved one) has been diagnosed with a serious illness, you walk down the street feeling like the world has changed. You see the smiling faces of people engaged in conversation, and you believe a wall has now been put up between you and them. You will never again be one of those carefree people enjoying a frivolous discussion with a friend.

And yet, if you could peer into the pasts of each of those happy people on the street, you would find a range of tragedies and obstacles. It just isn’t possible to get too far in life without being touched by divorce, illness, death, financial hardship or violence.

When we think about how we’d react to a diagnosis or when a diagnosis first happens, we cannot imagine life will ever have light, laughter and happiness in it again. As the psychologist Dan Gilbert points out, though, we don’t always take into account all the factors in life that influence our happiness on a day-to-day basis. As a result, we don’t always recognize the many ways those factors will lift us up, even in the saddest times.

When your life is affected on a daily basis by your own illness or that of a person close to you, that illness doesn’t define you, and it doesn’t determine every interaction you will have. When you interact with other people, there are moments of connection, of silliness and humor and contentment. In many ways, the fact of the illness becomes a background condition in life and the day-to-day moments are the ones that affect how you feel.

The Mighty’s stories are a wonderful example of the ways that the lives of people touched by illness are rich. These are not stories of people who occasionally transcend the pits of despair to feel fleeting moments of happiness. These are stories of people whose lives are happy, joyous and fulfilled. On those days when an illness in your life drags you down, these stories are great reminders that many days will be good days.

Of course, a diagnosis is still a shock, and that can be a traumatic experience. Lots of research suggests that these traumatic experiences are stressful and that stress can get in the way of healing.

If you’re feeling that stress, the research of my colleague Jamie Pennebaker suggests that you should write about it. Pennebaker’s research demonstrates that people who spend three days writing about the pain and difficulty of traumatic experiences have less stress later on than those who write about topics like time management.

The idea is that any traumatic event — like a chronic illness — tears at the fabric of your life story. Those disruptions of the narrative of your life cause you to think repeatedly about the problem you face. But these thoughts just cycle without end. Nothing gets resolved.

By writing about the trauma, though, you get it outside yourself. You start finding ways to weave the new information into the tapestry of your life. Over time, adding this information to your life story makes you less likely to engage in that cycle of thoughts. Ultimately, that lowers your stress.

So, don’t just read the stories here. Write your own. Whether you share them with anyone else or not, you are helping yourself to heal.

Want to celebrate the human spirit? Like us on Facebook.

And sign up for what we hope will be your favorite thing to read at night.

Four years ago, I sat in the hospital holding my 2-year-old baby girl, adopted just six months earlier from Ethiopia, when I heard the word “Leukodystrophy.” I’d never heard that word and was told not to Google it. But I knew by the doctor’s tone, it was very, very bad. If I could take myself back to that day, this is what I would tell myself.

You will cry every day. You will cry more than you ever knew possible. You will cry when you’re asleep, you will cry when you’re eating, you will cry. But then you won’t. You won’t cry every day. You will be surprised when you don’t. And you will smile. And eventually you will smile more than you cry.

Screen Shot 2015-01-24 at 9.17.18 AM

No one will formally give you the diagnosis. You will have to request the hospital records to learn the official diagnosis. It’s too terrible. The doctors and nurses have grown to love you and your girl. No one wants to be the one give you the diagnosis.

You will be surrounded with people who love you. At first. Then they will leave. Your best friends you consider your family. Your church. The ones who should always be there. They won’t be. You will tell them you need them. You are losing your baby. You shouldn’t have to lose your friends. They will say they are sorry. They are busy. They love you and pray for you. They promise to do better. They don’t. You will give them specific ways they can help you if they choose. Maybe they just don’t know how to help. You will forgive and move on, because holding on is only hurting you. There is still pain, but there is freedom in forgiveness.

People you don’t know very well and people you haven’t seen in years will show up in big ways. They will amaze you. You will make new friends because of this disease, and won’t be able to imagine your life without them.

She will outlive her life expectancy. You will have to work. She will continue in school because they love her. Your friends at work and at her school will take care of both of you. They will make sure your freezer is stocked so you have something to eat when you’re too tired to prepare it. They will learn to take care of her so you can work. They will come watch her so you can run or go to the store. They will bring you meals and money for meals while you are in the hospital. You will be surprised at their kindness.

You will have to fight for everything. Even her food. You will be exhausted because she will not sleep. And it won’t be the kind of exhausted that comes with having a newborn baby in the house, though well-meaning people will compare it to that. The closest thing I can compare it to is to being in the PICU every single day and night.

She will get too sick for school. Your friends in other states whose kids have this disease will tell you get a nurse to help you take care of her at home. Your doctor will tell you she is doing amazingly well. You are a wonderful mother. You are a wonderful advocate. You are taking care of her while working full time and aren’t sleeping. You need help. You have to move so you can both get help. You will sell your cute little house and you will move. It will be impossibly hard to start over. But it will be good. She will have good nurses every day and night. She will have good doctors. They will love you and trust you as much as her first doctors did. You will sleep. You will work. You will make friends. You will feel somewhat normal for the first time since diagnosis.

Your life will be so very different than you had planned. But that little girl, the one you are holding, the one who has been so attached to you since the first day she met you, she will be a joy. She will be comfortable. She will be happy. Her smile will continue to light up your life, and the lives of others. You will love her more than you ever thought possible. And you will know that if you had the chance to go back and do it all over, you would choose her again and again.


For all of January, The Mighty is asking its readers this question: If you could go back to the day you (or a loved one) got a diagnosis, what would you tell yourself? 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.

Want to end the stigma around disability? Like us on Facebook.

And sign up for what we hope will be your favorite thing to read at night.

Real People. Real Stories.

150 Million

We face disability, disease and mental illness together.