Like every mum, I was terrified when my baby started full-time school. Even as I dressed her in her shirt and tie, I wondered yet again if mainstream was going to be the right place for her. She left that day still unable to dress herself and not yet potty-trained. She has autism and selective mutism, and despite having had an extra year at nursery, she’s still one of the smallest children in her class. My beautiful blue-eyed girl is also the twin sister of a boy with complex needs. He has tumors, autism, behavior challenges, global delay and is nonverbal.

I wondered — how would she manage without him, as his school is 14 miles away from hers? I worried — how would anyone know to meet her personal needs if she was unable to talk? Would her anxiety, vulnerability and tiny size make her an easy target for bullies? Would her stress cause learning issues?

I wondered. I worried.

But something changed that first week she started school. One day, her classroom assistant told me my special, fragile, silent girl had actually taught her whole class a lesson without even saying a word.

It turns out, two other children in her class were also silent but for a different reason: they didn’t speak English. One assistant sat next to these two and my daughter so she could help them all, but none of the teachers spoke Russian.

Girl sitting at a table in a classroom
Miriam’s daughter sitting at a table in a classroom

On this day, while the teacher taught a lesson, the children sat on the floor. My baby girl sat and listened intently and returned to her seat. The class had been asked to draw a picture and write their names at the top of the sheet. As all the eager children started to pick up pencils and pens, Naomi just sat there. She watched as the classroom assistant struggled to help the two others who had no understanding of what had been asked of them.

As another child momentarily distracted the assistant, Naomi got up from her seat and walked over to the two children. She took the water bottle holder, which had everyone’s name on it, and pulled it beside them. And silently she took each child by the hand, pointed to their own name and then pointed to the top of their paper. She then picked up a crayon and began to mark their paper ever so slightly and pointed to what the others were doing.

She waited while they took in her attempts to communicate, and slowly they began to copy down their names and draw. She looked at them and smiled. Only then did she return to her own chair to try and write her own name.

The classroom assistant cried. The teacher watched. The most unlikely child in the class had taught them all a lesson that day. The child with a communication disorder actually showed them all how to communicate.

My daughter still does not know one word of Russian. But living with a nonverbal brother with complex needs taught her something: you don’t need words to help people.

I still worry. But I know my daughter will be OK. And I could not be more proud of her.

A version of this story originally appeared on Firefly Friends.

Follow this journey on Faithmummy.


My daughter Casey was born in 2006 with many medical issues, including no ability to gag, suck or swallow. Not being able to use her mouth to eat, she had a G-tube placed shortly after she was born. Although I was never able to breastfeed in the traditional sense, I knew how beneficial breast milk can be, so I pumped my little heart out. Sadly, it just never worked for me.

We were also told she would be on formula for a long period (most likely her entire life), and we may as well go ahead and get used to it. Very early on (when she was less than 1 month old), we made the switch to formula nutrition. I was sad I could not produce enough breast milk for her, but I came to terms with it, and we made what we had work.

Casey turns 10 in April and has been on one form of formula or another for her entire life. We deal with ongoing gastrointestinal issues every day. Casey has a sensitive tummy and cannot process a lot of formulas. We have been on the same toddler formula for years. In 2012, the formula changed packaging. We were told by our durable medical equipment provider, dietitian and gastroenterologist that the only change was the package — the formula had not changed.

Long story short, it changed. We spend many weeks trying to get answers, and finally the production company confirmed that yes, the vitamin D and calcium had not only increased, but the method of adding them had changed. They did not think it was a major change and therefore decided it wasn’t worth telling their users. If my child didn’t have a sensitive gastrointestinal tract, maybe it would not have mattered, but for her it mattered a lot. We collected as much of a surplus of the old version as possible and tried a few other formulas as well. When we ran out of our surplus, we still did not have the answer.

One of the formulas we tried was an elemental formula. We quickly learned that Casey has a horrible allergy to one of the enzymes in elemental formula. She was given about 100 cubic centiliters (just over 3 ounces — less than half a can of soda) over the course of about four hours. This started a chain of events that took a huge toll on Casey. Her digestive system was so damaged that she could not handle any of the formulas we tried.

One of Casey’s nurses had recently had a baby. She and I were talking about all the issues and how I just didn’t know what formula to try next. She said kind of jokingly, “How about breast milk?” At first we both just laughed. After a couple of minutes, though, we realized it wasn’t a half-bad idea. She can’t digest the heavier formulas, and the enzyme in the easier formulas caused a horrible reaction. Why not breast milk? Casey’s nurse able to pump more than her baby needed, and she offered some of her extra to Casey.

I contacted Casey’s pediatrician to get her thoughts. She thought it sounded like a good idea. So there we were: Casey was 6 years old and back on breast milk. The best part: she did great with it. Sometimes you have to think outside the box. I never would’ve thought to try this. I am so glad her nurse suggested it.  We used the breast milk as a bridge at first, and then we mixed it with other formulas (half and half) to slowly get Casey back on formula.

I thought Casey’s breastfeeding story ended a long time ago. Who would have guessed we’d have another chapter six years later? We’re lucky to have such amazing, loving nurses as well. Her nurses really will do just about anything for her.

two women and child on couch
Marty (left), Casey and a friend

Follow this journey on Casey Barnes.

The Mighty is asking its readers the following: Describe a moment you gave or received a gift that touched your life in a special way. 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.

Dear Detroit Lions,

I know your bodies are sore and your confidence is running on empty. I am writing this to hopefully give you some inspiration. I am just the mom to a little boy who loves you. I am the mom to a 5-year-old little boy who believes in you. I am the mom to an amazing little boy who can’t play contact sports, like football, because of his medical condition.

little boy holding detroit lions tickets
Sarah’s son holding Detroit Lions tickets

Each hit Matthew Stafford takes, my son cringes. “Oh, no, Stafford!” “Look, he’s bleeding, is he OK?” “Mom, I think Calvin hurt his ankle.” He gears himself up each week to watch you play and his little heart breaks with every loss but he never gives up on you. He looks at me with his big hazel eyes. “Next week, right Mom?”

He has laid in a hospital bed many times, and if he is in the hospital when you are playing, you better believe he makes sure his game is on that TV.

So, no matter how many jerseys people spit on or burn, no matter how many fans leave that stadium early, you are still somebody’s hero. While you are waiting to run out on that field, you might be worried about what the fans are thinking or what the media is going to say. You might think you are just a football player, but you are so much more, and I want to thank you for taking the time out of your busy schedules to make my son smile.

Sarah and her children with Detroit Lions player Stephen Tulloch
Sarah and her children with Detroit Lions player Stephen Tulloch

Oakley had taken a liking to #35, Joique Bell, when he started playing for the Lions. He thought he could run fast and jump high (his words). Come to find out, Joique’s sister received a kidney transplant after being diagnosed with renal disease. This hit close to home as Oakley was born with kidney disease and will eventually require a kidney transplant once his are unable to keep up with his body’s growth.

Mr. Bell had held a contest on his Facebook page for an autographed jersey. It was a contest where you had to post a photo and whoever received the most likes won the jersey. Team Oakley came together, and Oakley had received the most likes! Next thing you knew, Mr. Bell’s manager, who is also his mother, contacted me and asked me to give her a call.

She said she wanted to surprise Oakley and have Joique give it to him personally after the football game we were attending. After the game, we went and met Joique’s mom, Candy. She brought us back into the family reception area where Oakley and his siblings were able to meet him and several other players, such as Golden Tate and Coach Caldwell. They were so nice and even allowed us time to take some photos with them.

Not long after, kicker Sam Martin hosted a Christmas party for the Project Scissor Gait Foundation, which is a foundation a good friend of mind started to help children with Prune-Belly syndrome and arthrogryposis. Several families with Prune-Belly syndrome attended, and a few players also came out to meet the children as well. It was held at Dave & Busters in Livonia, Michigan.

kids standing with detroit lions football players
Sarah’s son (bottom right) and his siblings with Detroit Lions players

To the Detroit Lions team members: you are his inspiration, and maybe he is yours.

boy sitting in play area
Sarah’s son wearing his Detroit Lions jersey

Follow this journey on medicine & smiles.

The Mighty is asking its readers the following: Share a powerful moment you or a loved one has had with a public figure. Or, write a letter to a public figure who you feel has helped you or a loved one through his or her work. 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.

From day one, we decided that the only way we were going to be able to survive our new life is to focus on the positives. Some days are a lot harder than others. We are more than aware of the severity of our situation – and not delusional in any way. Instead of dwelling on every setback, bump, hurdle or whatever you choose to call it, we decided that we would acknowledge the challenge then move forward. We have put all of our energy into celebrating every victory, no matter how small. We cherish each moment we get to share with our daughter, Casey.

When we were in the NICU with Casey (back in the very beginning), my husband, Tim, and I really had no choice other than to adopt the positive approach. The doctors actually pulled me aside and were legitimately concerned that I was delusional for being so positive. I explained to them, the same as I am explaining to you all now, if I can’t hold on to the positives, I won’t make it.

I had to explain to them that yes, I know my child is very sick. I had to explain to them that I know I could (and still can) lose her at any moment on any day. I had to explain that I know my daughter will only get worse over time. And I had to tell them when the time comes, I will somehow recognize it and accept it. These were not things I wanted to say, but this was/is our reality. I know it, and Tim knows it. But we don’t want to waste the precious time we have with Casey dwelling on those things. We want to make every moment count and as wonderful and positive for Casey as we possibly can.

Just as we focus on enjoying and celebrating life with Casey, we want others to do the same. We don’t want people to hear her story and feel sad or pity for her or us, or “glad they aren’t us” (yes, that’s a quote). We want people to hear about her and feel proud and lucky to know her. We want people to see her for the amazing fighter she is. And we want people to see all of her achievements and help her celebrate them.

We hold hope that Casey has a long and wonderful life. We feel so incredibly blessed to have her in our lives. She is the most amazing person I have ever known. Our hope is that everyone in her life knows how lucky they are to be part of her amazing journey.

Each time Casey is sick, each time she is hospitalized, even when she grows, she gets worse. Her pulmonary, GI and physical development are deteriorating (sometimes slowly, sometimes quickly), and there is nothing we can do to stop them. Even when she gets out of the hospital or gets over a specific illness, she is not able to quite make it all the way back to where she was before. Eventually she will no longer be able to breathe and/or eat. Every time we go to a doctor’s appointment, they point out to me that she is worse than the time before. I don’t talk much about those details. When I say an appointment went well, it means the doctor did not push to admit Casey to the hospital or hospice care. It means Casey is doing as well as can be expected for her condition.

We focus on the positives and will continue to do so. The words we don’t say are just as important as the ones we do say.

The Barnes family
The Barnes family

Follow this journey on

Four children have died in the past month. Not just any four children, but four children who have the same rare disorder as my son. And that scares me. Our children’s lives have an early expiration date.

You see, this rare disorder has had the potential of taking their life since they were born. Upon diagnosis, the doctor comes in with papers and solemnly delivers the news that this condition can be deadly and can take our precious child without much warning or it can happen over time. And so with this news, we take our babies home and watch them like a hawk, monitor their illnesses like an ICU physician, bring them to the ER when we have that famous “gut instinct,” and we hope and pray they’ll be the child who makes it to adulthood. We are most definitely those beloved helicopter parents. And for good reason.

I don’t know these four children personally, although I feel like I do. Their parents and I are family by way of having a child with special and medical needs and being on social media. I have watched these four children grow up, watched them reach milestones, endure hospital stays and be oh-so-loved by their families. Then one day, the news spreads like wildfire. Another child is gone.

Father kissing young son
Katie’s husband and son

Their deaths knock the wind out of me like a punch in the stomach. I sob at the news and mourn their loss for days, weeks and years after. Their loss hits me deep in my heart where I can feel a tiny sliver of the heartache their parents feel.

In a way, their child is my child. And my child is theirs. When one of the group buries their baby, we all grieve. Because after all, that could’ve been our baby. We can be removed from this elite group that we belong to and put into another elite group that no parent should ever have to belong to… the group of parents who now have an angel in heaven. The group that has empty, aching arms. The group that we fight to stay out of with every ounce of our being.

I wish I could ensure that my child lives a long, happy life. But I can’t. I don’t make the rules. But still, I dream… I think about what he’ll look like when he’s a teenager. I think about how his older brothers will go off and get married and he’ll be here with my husband and I smiling happily as they come back home to visit. I think about him being the size of my husband and us having to recruit help in caring for him. Yes, this life may sound arduous and incredibly difficult, but the thought of losing my child to his diagnosis gives me a stabbing pain in the heart and makes my throat close up, and that is far more difficult to deal with.

To no longer see his bright smile or sparkling eyes, no longer hear his infectious laugh or him humming to his favorite toy, no more hospital stays or therapy, or no longer caring for every aspect of his life — like I’ve done for the past nine years — that is a heartache I’m not ready for or will ever be ready for. While I grieve the deaths of these children and try to stop my own child from going to his eternal home, I remind myself to live in the here and now. Instead of worrying nonstop (which I do) about the how, when and where, I have to tell myself that my child is alive today and I need to cherish his presence.

I soak in his goodness every single day. I embed these memories we make — both the good and the bad — in my brain. I breathe in the smell of his shampoo and lotion when rocking him. I brush his thick hair with my fingers and feel its texture so it’ll stay with me forever. I try to make mental pictures of the life that is in his eyes so that I’ll never, ever forget. I just try my best to remember all of him, every single teeny tiny last piece of him. Forever.

This life we live is brutally difficult, strenuous and exhausting, but it is beautiful. It is ours together. And as hard as it may be, I can’t imagine not living it anymore. So I’ll sit here tonight rocking him, breathing him in and cherishing every day like it is our last and I’ll continue to do so until the end, when either I or he gets called home to be with the others.

Rest in peace, sweet angels. May you run, dance and leap for joy in heaven.

Follow this journey on My Blessed Little Nest.

I was having a conversation with a friend. I was (and still am) in the middle of a tornado of medical problems. I was getting over an allergic reaction, a lot of med changes, an infection that put me on antibiotics and my immune system just pretty much threw its hands up and said, “Peace out!” Due to all of this and the fact that it was Christmas time, I had shifted myself into overdrive for a few days and was crashing hard. I’m not going to lie; I was miserable.

So when my friend came to visit me, all I could manage was to chat with her while lying in bed. Then she asked what my plans were for the next day. I said, “I’m not planning anything for tomorrow. I need a day completely free to rest.” She gave me this frustrated look and said, “You’ve been resting all night. You slept a lot today. You can’t be that tired! I want to be able to go do things with you! If you don’t want to do things, just say so. But don’t use your illnesses as an excuse.”

That had me fuming and so hurt inside. So I have a quota on how much sleep I am allowed? I have a limit on how much rest is acceptable? How do you know how tired I am? And most of all, if you only knew how badly I want to go do those things, too. I didn’t say anything, though, because I didn’t want the wrong words to slip out.

I guess she saw how much I was struggling because her face softened and became apologetic. “I’m sorry,” she said. “I’m impatient. And it’s really hard. And I know it’s hard for you, too, and it’s really hard. But I’ll work on being more patient about this stuff.”

Her sudden understanding made me break down because she was getting it. I told her this:

“That’s one thing I’ve had to become: patient. I never had a choice. I’ve been sick for almost three years now… When you can’t see the light at the end of the tunnel but have to keep going anyway, patience is one of the most important things to grasp hold of. I know not everyone has been in a situation where they’ve had to embrace patience, but sometimes you have to do it alongside someone else.”

This isn’t to say that I’m not striving to get better. I am. I’ve come a long way and am working hard to accomplish even more. However, patience has been key on this journey.

Please be patient with me.

Erika lying in bed with a dog
Erika lying in bed with a dog

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 Submit a Story page for more about our submission guidelines.

Real People. Real Stories.

150 Million

We face disability, disease and mental illness together.