girl wearing hat

“It’s rainin’ but there ain’t a cloud in the sky
Musta been a tear from your eye
Everything’ll be okay”

— “Waitin’ on a Sunny Day” by Bruce Springsteen

Two weeks ago, I called my daughter, Ellie Mae, a superhero. I wasn’t referring to her as a Starfiretype character with the power to harness solar energy. She’s more like one of the X-Men whose mutant power, on this occasion, was an immunity to drugs. (If you’re not a comic book geek you won’t understand any of that!)

A scene from “X-Men: Days of Future Past.” (Photo courtesy of Marvel and Twentieth Century Fox Film Corporation)

Following a long period of epileptic seizures, she had three doses of rescue meds at home to sedate her and to try to break the cycle. At the hospital, she was given four more without success.

After talking to the doctors, we agreed she was a superhero.

“Hold her tight, Dad, I need to get this needle in the back of her hand.”

That was to insert a canula. There was no time to numb the area with the usual array of magic creams. Just hold her tight.

And they did it twice.

My response was, “She’s had worse.” Because, of course, she has. She’s had more hospital visits and procedures than most of us. I’ve never had an overnight hospital stay, she’s had a lumbar puncture. There’s no competition against that in the superhero stakes.

The doctor told us the issue may be her growing tolerance to drugs. As anyone with epilepsy will tell you, medication is a moving goal post. In the time they take to work, you get used to them and have to change medication. This one treats your hand tremors but makes you sleepy, that one makes you more alert but gives you hand tremors. It’s frustrating but acceptable.

Last Monday, we were expecting to be given a change of drugs, maybe a course of steroids to break the cycle and then go home. Instead, we were told we had weeks rather than months or years left with her.

I knew the doctor was wrong because we’d been told that children with Batten disease rarely reach their teens. I played it safe and decided in my mind that we had her until she was 10. At 10 years old, I’d start to panic, wondering if each day would bring some development we couldn’t get back from.

But Ellie Mae is 6.

Two days after going to hospital, we were told she probably had days rather than weeks.

I shouldn’t have been surprised because even superheroes die. Superman, Batman, Spider-Man, Captain America, all the Robins, Flash, Daredevil, Green Arrow, Green Lantern and Phoenix (it’s every couple of weeks for this character).

They’ve all succumbed at some point and some of them were pretty heroic, but they all chose their path. Yes, I appreciate that Daredevil didn’t ask to have toxic waste spilled on his eyes as a child, but he did decide what to do with the power it gave him. He could have chosen to just muck around the rest of his life.

But Ellie Mae didn’t choose any of this. She accepted the disease when it first appeared and gave herself to tests and procedures, EEGs, lumbar punctures, MRIs, general anesthesia, local anesthesia, eye tests, swallow tests and hearing tests.

And she dealt with it all with her usual cheeky manner; as Rod once told me, she was always the happiest girl in any room.

Ellie Mae passed away at 10:30 on the morning of May 7. She was 6 years old and had been fighting Batten disease since she was 3. She chose to fight it in her own style, with little complaint and often seeming as if she didn’t have a care in the world.

A princess and a superhero.

Hard times baby, well they come to us all
Sure as the tickin’ of the clock on the wall

Sure as the turnin’ of the night into day
Your smile girl, brings the mornin’ light to my eyes
Lifts away the blues when I rise
I hope that you’re coming to stay

I love you to the moon and back.

This post originally appeared on Cycle to the Circle.

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The story begins in Disney World at the all-you-can-eat breakfast buffet (DWAYCEBB). How we got there is another story involving the finest colleagues you could work with, but that’s for another time.

It was a normal breakfast. I know the DWAYCEBB isn’t normal, but the breakfast experience itself was normal for us. I was trying to eat, stop Caleb hitting people with Scar and avoid the Mickey waffles Ellie Mae was sharing. I wasn’t managing any of it.

Ellie Mae was upset. That’s not unusual, she’s often uncomfortable and upset. She can’t scream and shout, and I’m sure if she could, we’d never hear the end, but she was crying. It was enough to disturb those near us, not to impact the whole restaurant.

Lynsey comforted her but nothing was working and Caleb was restless. The biggest issue with Caleb’s mealtimes is his consistency. He only eats sausages, he’s consistent, unless he’s decided only to eat stuffing. This week he is eating potato waffles; I have no idea why. So for breakfast he’s having “tea” because waffles are “tea.” I think that’s all understandable.

He won’t eat sausages with potato waffles, and he has to be watching “Planes” on his tablet and the TV or he wont eat either.

Unless he’s watching “Ice Age” that day.

The point is when enjoying the DWAYCEBB, Caleb isn’t the company you want. Once he’s finished his sausage, the meal’s over, and you’d better be ready to go.

Lynsey took Caleb to get changed for swimming and I comforted Ellie Mae. Caleb likes swimming, unless he’s decided he doesn’t.

I love singing with the kids. Our house isn’t filled with traditional kid’s songs. They’ve picked up a few at preschool but a bedtime sing-song is more likely to feature Bruce Springsteen or Taylor Swift.

I’m thrilled Caleb has developed my love of Springsteen. When I first introduced him, “Booce” became Caleb’s word for music. I could sing anything if I said it was Booce, (unless it was “The Lion King”; Caleb knows everything from “The Lion King”). Over time he has developed some understanding and he now notices if I try to fool him with some Lyle Lovett.

Ellie Mae is not bothered, but she enjoys a sing-song and I love singing to her.

So we’re in Disney World, she’s upset, and I sang her a song:

“I came by your house the other day, your mother said you went away”

And then I realized that’s what happened; she went away. She walked to school on her first day, but five weeks later we took her in a wheelchair. She could count with you to 20 but then couldn’t get past three. Then she forgot our names.

So I’m in the DWAYCEBB, Ellie Mae on my lap, singing a song and crying because she went away and there was nothing I could do. I doubt crying is common at the buffet. Maybe some regulars shed a tear at closing, but it’s probably not a frequent thing.

But this morning, she recognized me. We sat on the sofa watching “My Friends Tigger & Pooh: Super Duper Super Sleuths,” which is what we watch if we’re up before Caleb. I put my nose to her nose and said, “Morning, gorgeous.” She looked at me and put her hands on my head. That’s a cuddle from Ellie Mae.  She’s always been the most loving girl and she loves a cuddle.

She spat out, “Da!” and that’s enough for me. Who wants a chatterbox for a child?

This post originally appeared on Cycle to the Circle.

The Mighty is asking the following: Can you describe the moment someone changed the way you think about a disability 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.

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We never knew where Zoey fell on the autism spectrum. We had a second opinion today with a different pediatric neurologist who has just as many diplomas and degrees on his wall as the first neurologist we saw in August.

Where does she sit on the spectrum? That has always been my question and no one could answer me… until today!

Zoey has classic severe nonverbal autism.

I was praised for getting her diagnosed so early and was told she is getting more than most 2-year-olds as far as therapy goes, with great therapists. I’m doing everything I can do! I’m doing it right!

Then why does it hurt so bad? I went in there and said, “Yes, I know she has autism.” I never doubted that. I wanted to know where she was… because she can’t tell me where she is… she screams out of frustration and tries so hard to communicate and help us to help her, but it’s painful! Painful for us to watch her scream out of frustration because she wants to eat or drink but the words don’t come out and she can’t point to what she wants, so she goes to the kitchen and screams.

Yeah, I wanted to hear something different today… I wanted to hear, “I think it’s an inner ear issue that could be contributing to her lack of speech.” The answer was no to that!

I watched as she turned the lights off and on in the exam room, and when we moved the chairs, I watched as she moved them right back so that she could keep doing it. I then watched as I said, “All done,” and she screamed at the top of her lungs and then threw herself and had a meltdown in the room.

I finished with the neurologist and we said goodbye while she listened to Michael Buble’s “Lost” on my phone to get her to calm down. We walked out with the neurologist saying, “She has great taste in music!”

She held my phone as I got her into her car seat. I gave her the “blankie” and not long after she was asleep.

I called my husband and told him about our visit and he said, “It changes nothing.” That is the same exact thing he said to me with her initial diagnosis in August. As I cried into the phone, he knew why I was crying. I don’t care about the autism; I wanted to hear something else, something that went like, “Yeah, let’s check her inner ear to see if there is an issue contributing to the lack of speech.”

Why did I want to hear that? Watching your child throw herself on the ground because she can’t tell you she’s hungry or thirsty, or that her ears hurt her or she needs something. She can’t point or ask… she screams! Watching her scratch and dig at her mouth out of frustration, because her mouth can’t say what is in her head, what she wants or needs. I wanted someone to say, “We can help her with her frustration!” It is excruciating and heartbreaking. You see, I can accept autism, but the frustration that autism brings is not fair! I wish things could be easier for her.

She slept in the back as I cried in the front because I can’t take away that frustration.

I cried and tears were all down my face. I waited in line at the McDonald’s drive-thru to get her chicken nuggets, which I knew she was just going to eat around the crunchy batter and throw the chicken on the floor. As I waited, I remembered my husband and what he said…

“It changes nothing.”

She’s our child.

She has classic autism.

We love her.

I still wish I could ease her frustration.

Follow this journey on Melissa’s Facebook page.

I remember my wedding day vividly for a number of reasons. I married the most amazing man who loves me for all that I am. Our wedding was planned with love. We spent hours crafting a ceremony that was perfectly us. We found poems and stories to include that spoke of our relationship. It was impossible for me to read the final draft of our wedding ceremony without tears in my eyes.

sarah ely the mighty

Our bridal party included our dear friends and siblings. My brother, Jamie, was one of our groomsmen.  Jamie has been diagnosed with PDD/NOS and mental retardation. Sometimes Jamie was happy to be a part of our bridal party. Sometimes he told me that he was too nervous to be a part of it, but we talked him through it. We explained what would happen.

My husband, James, told him how much it would mean to both of us for him to be up there with us. James said he would have another brother. So Jamie agreed.

We’ve talked to so many people since our wedding day. They tell us how beautiful our wedding was, and how happy James and I were. But, without fail, the part that people remember the most is Jamie.

When the minister asked if the community around us affirmed our wedding, everybody was quiet, still listening. Into that silence, Jamie shouted YES. He didn’t hesitate. He shouted. YES. There was a pause, and then laughter. And clapping. Because Jamie’s declaration of YES was exactly what our wedding needed.

Jamie didn’t know that we would be asking for an affirmation, or even what that meant.  But he did know that that was the moment to say it, and if you’re going to say it, you may as well say it as loud as you can.  The ceremony stopped as everyone cheered for Jamie, who was grinning from ear to ear.  He didn’t stop smiling for the rest of the day.

I think back on this moment often. It was perfect. Jamie was perfect. We would have had a lovely day regardless of what happened; we were getting married! But the fact that Jamie took that day and really made his mark on it made it another thing all together.

Our wedding photographer managed to capture that moment after Jamie said yes. You can see our joy, and the joy of everyone around us. What better wedding gift could we have asked for?

The Mighty wants to read more stories about siblings, whether it’s your favorite memory or a tough moment that taught you something. If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio.

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My sweet 7-month-old son, Fynn Tucker, is in the fight for his life. It’s a fight he has been fighting since birth, something we were told was just raspy breathing caused from still having a little fluid in his lungs because he was born via c-section. But I knew in my heart my son was battling the same battle his older brother battled years before.

Seven months later, countless tests, countless sedations and a 5-day hospital visit later, we’re still fighting. He was finally diagnosed with laryngomalacia in January 2015. He was also diagnosed with obstructive apnea and severe reflux in October 2014 and asthma in December 2014.

I have so many negative things I could say. I could express my hate in watching my innocent child struggle to breathe or quit breathing all together. I could write about all the negative things laryngomalacia has done to my family. But I would much rather turn this part of my life, of my son’s life, into a positive and talk about all the good things it has done…

1. It has showed me what a blessing life is. Life is so fragile that I won’t waste another second. I will cherish ever piece of my children, and for that I am grateful.

2. It has made my husband and me stronger. Watching your child struggle to live is an eye-opener and has taught my husband and me to work together… so for that I am grateful.

3. My son isn’t just a normal baby… he’s a fighter. He’s fought so hard in his first year of life that he is ready to fight anything, and for that I am grateful.

4. It has showed me who my true friends are… the friends who are there whether you have the time for them or not, the friends who visit the hospital when you are there for five days watching your child struggle to breathe… those are the friends I will keep in my life, and for that I am grateful.

5. I have met some amazing people among this journey, some people going through the same battle and some going through a different one. But regardless of their battles, they always keep a smile and love life and because of them, I have learned to put my faith in the Lord and found peace with God. I believe he did it so I could be his voice and fight for him, beside him, and I have been blessed to love him… and for that I am grateful.

The Mighty is asking the following: Can you describe the moment someone changed the way you think about a disability 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.

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I assist in a pre-K class that has students with “differing abilities” and then five “typicals” (students who require no additional resources).

One of our students, MJ, has cerebral palsy. MJ has the thickest darkest curly hair. I get the biggest smile from him when I run my hands through those curls. His smile brings one to my face as well.

At the beginning of the year, typical students who have not had one-on-one daily contact with kids with differing abilities tend to kind of step back, stare and ask lots of questions. By the time the first 30 days of school have passed, it’s like the kids have known each other forever. Speech teachers, physical therapists, teachers for deaf and hard-of-hearing students, and occupational therapists visit our classroom daily. We hear a knock and the kids look up and see which “helping” teacher it is and go back to what they’re doing. It’s like asking a student to pass a crayon; in other words, nothing out of the ordinary.

MJ’s mom is expecting a baby. One day she was in class and all the kids were asking about the baby. Boy or girl? Boy. Name picked out? Christian. When is the baby due? March.

Then one of our typical students, Susie,  looked at MJ and asked, “Is the baby going to be like MJ?”

Silence filled the air. All the grown-ups looked around at each other. I took a deep breath and was going to remind the children about what cerebral palsy is… but then the student who asked the question, Susie, piped up in a very matter-of-fact way: “If he is going to have dark curly hair like MJ, he better get used to having Ms. Murray running her hands through his thick curly black hair. Ms. Murray loves those curls. She says the curls are his hair smiling.” Susie went back to playing with MJ.

I couldn’t help but smile and shake my head. My thought immediately went to MJ’s differing ability, but this sweet classmate didn’t even have that on her mind. It was the dark hair with curls!

P.S.: Christian Xavier was born March 25… and he has a head full of dark curly hair!

The Mighty is asking the following: Can you describe the moment someone changed the way you think about a disability 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.

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