Little Girl Sings ‘You Are My Sunshine’ to Great Nana With Dementia

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Below you’ll see a deeply personal moment between a little girl named Sophie and her great nana, who lives with dementia.

Upon meeting for the first time, Sophie sang “You Are My Sunshine.” Her parents were nervous how the little one would react to her nana’s state, according this YouTube video’s description, but Sophie surprised them with the beautiful moment below.

h/t BuzzFeed

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What I Wish People Understood About Teenagers With Chronic Illnesses

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I think people often forget about the sick teenagers. We aren’t adults yet, but we aren’t little kids either. We can understand what the doctors are doing to us and why. Sadly, what comes with that is sometimes knowing we’re going to have to feel worse before we can feel better. We are sick at a time of our lives when others might feel invincible. You might think nothing can ever stop you in this world and then — boom  life isn’t in your control anymore. As a teenager, I want to have that control, and not having it makes it hard to cope.

Teenagers like me are able to understand what’s happening even if we don’t fully get it. We don’t have the experience adults typically have, which can make things confusing and complicated at times. Being sick and dealing with all those added emotions on top of trying to manage a normal-teenager life is quite the ordeal. We’re at that age when we gain more independence, like being able to go out with friends without our parents, driving or for some people, heading off to college. But just imagine being 14 or even 18 and suddenly having all your independence stripped from you. What if you needed someone to help you get up to go to the bathroom, to walk, to shower, to help give you your needed medications, to take you to your doctor’s appointments, and to have someone be there at the hospital with you during your stays? I think that’s pretty difficult for a grown adult to grasp, much less a teenager.

Our friends can’t always relate to us because they might not understand. They don’t know what it’s like to be sick and not have the energy to get out of bed in the morning. We might want to go to school, but we just can’t. Missing out on social events and the daily aspects of life because of hospital stays, treatments and doctor’s appointments can make us feel isolated. Life goes on with or without you, and life often has to go on without you when you’re busy being sick in the hospital and not able to do anything.

It’s hard enough being a teenager and figuring out what you want to make of yourself and grow up to be. Adding on a chronic illness can make that 10 times harder. Sometimes I feel like 98 percent of the time, life never goes my way. If life went my way, I wouldn’t be sick. I wouldn’t have all these diseases that people can’t pronounce or haven’t heard of. I wouldn’t have all these tubes sticking out of my body, and I wouldn’t be taking all these pills I’m taking now. I’d be healthy, and I’d be back playing soccer, attending school every day and finishing school on time.

Some of us have grown up being sick and in the hospital, but to others, it’s a whole new world. The younger kids might not know what’s happening. Sometimes they’re left in the dark about many things; they don’t know why they’re getting sick from medicine or if their treatment plan is even working. But we teenagers can experience the bad news firsthand. We can see our parents cry and understand that pain, too. We might cry, too, because we know something bad and scary is happening. We’ve already been exposed to life as it is, and we know what’s supposed to happen and what isn’t.

We are very capable of understanding what’s going on in our bodies. We might be just like any other young adult except we have these extra challenges in front of us. My disease doesn’t inhibit my ability to comprehend what you’re saying. I’m not a little kid, so don’t treat me like that.

All I am asking is this: please don’t forget us. Treat us like any other teen would be treated; however, understand we may not be able to do everything our peers do, and sometimes it might be hard for us to express how we feel when so many emotions overwhelm us. It can be hard for us to share exactly how we feel because most days we might not even know. It’s not an easy journey. Treat us like any normal teenager and help us along the way, but also give us some space. That’s the only thing I truly want.

Follow this journey on It’s Not As Easy As You Think.

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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An Honest Look at Special Needs Parenting and Why You Can Do It, Too

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In my time as a medical mama, I have seen countless mothers and fathers from all walks of life care for children with extraordinary needs.

It has changed me. It has uprooted my belief, my “I can’t do this” mantra. I can do this, and if you happen to walk a similar road, you can do it, too.

When you were pregnant, maybe you hummed these words under your breath:

I just want everything to go well.

I don’t want gestational diabetes, I don’t want a breech baby, a baby born still.

I don’t want a miscarriage, I don’t want an emergency C-section.

I’m pretty sure I couldn’t handle a sick baby, one with special needs, one with demanding medical needs.

I don’t care if it’s a boy or a girl, as long as it’s healthy.

I don’t want these things, because I don’t want pain in my life. Pain is bad, and it makes me vulnerable, it makes me hurt. I am afraid.

In a perfect world, sickness and disease, death and severe birth defects would be eradicated.

This world is far from perfect.

You are not a bad person if you think you can’t handle a child with special needs.

But you should probably let that go.

We actually have room in our hearts for sick children, for children with special needs. We have room for grief and the challenges associated with medical conditions. We have the capacity to hold far more than we are holding now. Don’t be afraid. I don’t want you to experience pain, I really don’t, but if you do, remember, you can walk through the hard places.

I had a dream about my daughter, Florence — a dream that she was born healthy before we knew there was anything wrong. I was so scared I would have a child with special needs or a disability because the world never talks about these things. People are given options. But my dream put my fears to rest. I prayed, like most mothers do, for the health of my child, and then I let it go and fell into a place of trust.

We found out she was breech at 36 weeks, and I cried so hard, I thought I might need counseling. I didn’t want a C-section! I didn’t want any more scars on my body, any more surgeries.

She was manually turned in my womb, and it was settled. It worked for us, and I felt so blessed. Done, done, done. We made it over our bump in the road.

I thought that was it.

I didn’t want a life that was hard or held seasons of grief (don’t we all?). I was scared of my plans getting messed up by something much bigger than me.

But let me tell you  it’s in the messing that we are made.

I thought mothers of kids with special needs or terminal diseases were somehow used to the pain — they were superheroes, right? I thought they could handle it because, well, they have a child with such extraordinary needs. They must be extraordinary, too. Handpicked. Special.

When I would think about special needs, I pictured wheelchairs, handicapped parking passes, feeding tubes, developmental delays, drool, twisted feet.

I thought of myself, and my inability to deal with that kind of stuff. Let me tell you a secret: I still do. It is hard, but I’m doing it.

Now, when I think of special needs, I really see the child who was once a wee, sweet baby. I see the vast expanse of sea where love lives, and it never runs dry. I see hope and room for miracles.

I see the heart-wrenching beauty, and my mouth drops open in wonder. Each one of these children was strong enough to face this unkind world, if only for a moment.

No one wants their child to be living on borrowed time, as the medical community so graciously puts it. It’s not easy some days, but there is grace.

Handpicked grace, for every season.

Last week, I turned up the dial on the radio when I heard about a little boy with terminal cancer. He wanted a full-blown carnival and he needed it soon. The Make-a-Wish Foundation made it happen in four days with caramel apples and ferris wheels. I turned the volume up and I cried and I felt and the mundane tasks of my day got pushed aside. I loved on Florence all day long. I sat by the couch and held her sweaty little hand. We didn’t do much of anything but babble to each other, have a bath and exchange eskimo kisses. I traced her belly button and kissed her tummy. She giggled and I blew her bubbles. I thought about how if we could make a wish, we’d invite Elmo over to our house and he would sing to her for hours.

I didn’t get to push her down a slide or have a play date with another toddler and mom.

I simply danced her around the living room, my toes twisting into the carpet, her legs flopping up and down. I danced and she watched the ceiling spin, and we were glad.

Sometimes, life comes in the form of a child, and it looks like heartache, loss, revelation and joy.

Sometimes, life leads us to the places no one really wants to go to: the fringes, the hospices, the sterile hospital rooms.

But we are here, and we are doing it.

The world is changed when life is birthed in the hard, unthinkable places. So, we will continue on, because love endures all things.

Read more from Michaela at Michaelaevanow.com.

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What I Want Anyone Else Living With Dystonia to Remember

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Living with dystonia is sometimes reminiscent of the plight of Sisyphus, a king from Greek mythology. Sisyphus was condemned to an eternity at hard labor. His punishment was to roll a massive boulder up a hill until he reached the top. However, right before he reached the top the boulder rolled all the way down and he had to repeat the task over and over.

If you have dystonia, this might sound like what you experience on a daily basis. It can be utterly frustrating and exhausting living with chronic pain, shopping for a good doctor, people not understanding, continually fighting to get better and not getting over the hump, trying to find new ways to relieve symptoms or just getting through the day with as little discomfort as possible.

Although it may often feel like we are rolling a boulder up a hill only to have it roll back down and crush all our efforts, in the face of all your challenges, is it not an accomplishment to even get the ball rolling up the hill? I think so. Dystonia challenges us in ways that we probably never imagined possible. These challenges make each accomplishment more rewarding. With this perspective we realize that dystonia does not diminish our value as a person. In many ways it enhances our value.

Unlike Sisyphus, there is hope for us. We are not alone in our battle, and while we have no cure at this point, we do have treatments that can help us manage our symptoms so we can live a productive life. Researchers are working every day to improve on them, as well as find new treatments. Granted, for many of us life is different than we once knew, but that does not mean it has to be any less enjoyable and fulfilling.

If you have ever seen the movie, “The Shawshank Redemption,” picture the moment when Andy Dufresne (played by Tim Robbins) escaped from prison after crawling through a 500-yard sewage pipe. He came out clean on the other end when he fell into the stream with the rain pouring down on him. He tore off his shirt and raised his arms to the sky as a sign of freedom and triumph after being wrongfully incarcerated for nearly 20 years.

Just like Andy Dufresne, we all have days where we feel like we are trapped in a prison cell and sewer pipe. There are also days when we feel as he did when he reached the other side and was free. Savor these moments. Remember these feelings. Write about them in your journal. Talk about them. Celebrate them. Figure out what you did or did not do that made you feel better. Do whatever you can to leave an imprint on your mind about how you felt so you never forget. We can then have the ability to go back to that place in our minds anytime we choose to get relief and peace of mind.

When you find yourself in the “sewer,” I suggest remembering that hope never dies. I believe you can always get out. You do not have to live in the mental and emotional world of fear and loneliness that is like the prison cell and sewage pipe. When you get knocked down, you can get back up. If you have done it before, you can do it again. It does not matter how many times you get knocked down as long as you keep getting up and keep going. I define strength not by how powerful we are but how persistent we are.

Just like Andy Dufresne said in the movie, “There are places in this world that aren’t made out of stone. There’s something inside that they can’t get to, that they can’t touch; that’s yours… hope… Hope is a good thing, maybe the best of things, and no good thing ever dies.” Remember this as you live your life. Just because today may be a challenging day, there is always tomorrow to begin anew.

September is Dystonia Awareness Month. To learn more about this neurological movement disorder, contact the Dystonia Medical Research Foundation. To sign the White House petition to have September formally recognized as Dystonia Awareness month, click here.

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A Letter to My Daughter, the Little Girl Doctors Said Shouldn’t Be Here

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Dear Piper,

My biggest wish is that one day, you will know in your heart of hearts how truly fierce, capable and resilient you are. If you understand and believe in what’s inside of you, you will be able to accomplish anything you set your mind to.

When you were just 6 weeks old in my tummy, that was the first time we thought we’d lose you. I started having horrible bleeding, and in my mind, there was no way you could’ve survived it. We had to wait weeks before we were able to go in and see that amazing, strong little heartbeat fluttering on the screen. Your dad and I breathed a sigh of relief, if only momentarily. We repeated this process several times throughout those early months. Episodes of bleeding in which we were told we would most likely lose you, that you had a 50 percent chance of making it, that you were hanging in “for now.” 

At 20 weeks I was sitting on the couch and felt a gush of fluid. After nervous laughter (“Did I just have an accident?”) and frantic calls to the doctor, we found ourselves driving 90 miles to the hospital in the middle of the night. The results? My water broke, and there was no measurable fluid and next to no chance you would survive. We were told most women would go into labor within the next 48 to 72 hours. If this happened, I would have to deliver; they would not stop the labor. If I did not go into labor, I would be sent home until 24 weeks. At that time we would be admitted into the hospital until you decided to make your appearance. 72 hours came and went and nothing happened, so we went home. Every week we would again drive the 90 miles to the doctor’s office and have blood work and an ultrasound done. Every week there was still no fluid, but we were a little more hopeful. However, we were reminded that with little to no fluid for your lungs to grown and learn to breathe with, you may not survive after birth, no matter how long I was able to stay pregnant. 

When we neared 24 weeks, we were told that if we wished to end the pregnancy, we only had a short period of time in which to do so. We declined, having said from the start that this experience was yours only, and that we would support you for every second of it. I believed how long that would be was up to you. 

Around 25 weeks we traveled to the next state over so that we could be in the best hospital to save your life. Before you were even born, we knew your life would require saving. To our heartbreak and surprise, they told us you were too small, had major heart conditions and most likely a genetic disorder. Any one of those alone would have been a battle. However, all three of them, along with the fact that you had spent the last four weeks with no fluid and would definitely be born premature — it was too much, they said. You most likely wouldn’t survive. We were asked what we wanted to do. Again, we stated that this is your life, and we wanted everything done for you.

During the stay in the hospital, we were told things like your chest to abdomen ratio was at a “lethal level,” and that they gave you a “1 percent” chance you would live. We had one doctor tell us she had so much more hope for your survival last week. 

Guess what? You were born, all one pound, 10 ounces and 11.5 inches of you at 28 weeks. You made it through the first week, then the first month and now two years. You fought through 128 days in the NICU to come home with a resolved brain bleed, feeding tube and oxygen. You have had countless doctor appointments, therapies and hospital stays. Just when we thought we had one thing taken care of, it came back and you are fighting that with the grace and fierceness you have from day one. There are hard days, but there are days full of smiles, laughs and lots of hugs and kisses. You are a survivor. The world may know statistics and possibilities, but it didn’t know the heart and soul in one pint-sized little girl.

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When Delta Air Lines Went the Extra Mile for a Boy With Autism

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I have a friend with a son named Jonah. Jonah is on the autism spectrum, is mostly nonverbal, attends occupational therapy with my son, G-Prime, and he likes Delta Air Lines. I mean reeeeeally likes them. He draws their logo and makes Delta costumes and gets massively excited when he sees their name. He’s their superfan! When his mother heard I would be flying Delta, she asked if there was any way I could get a selfie with a plane in the background and maybe some of their cookies. Easy peasy!

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Before my flight, I ran around the windows at my gate, taking pictures of Delta carts, Delta planes and Delta baggage carts. When I explained what I was doing, the Delta employees working the gate let me take a selfie with them in the background.

Once I was on the plane, I spoke with the flight attendant in my section and asked if I could take pictures of him and get some packets of cookies for my buddy, Jonah. Not only did this gentleman oblige me, but several of the passengers behind me passed forward peanut and pretzel packets and wished me and Jonah the best. You fellow flyers are awesome!

After we landed, I snagged a picture with the flight attendants and pilots and was satisfied that I accomplished what his mom had asked. Plus, I had extra goodies for him. Yes!

On the return flight, I got to the airport early, checked in, found my seat and settled in for a three-hour flight. But it didn’t happen. There was a mechanical issue, and a part needed to be fixed. We had to de-board the plane and wait for six hours until the next flight would be leaving. People were stressed out, disappointed and upset. But to Delta’s credit, they handled things beautifully. Pizza, snacks, board games and activities were provided for those forced to wait, and they assisted the rest of the passengers on finding new flights and making necessary connections. I understand how hard this delay was for most of my fellow flyers, but for me it was the perfect opportunity to get a few last shots of Delta planes, baggers loading luggage and, best of all, the pilot of the plane agreed to record a special video message for Jonah!

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That four-second, five-word video meant the world to Jonah. His momma messaged me that he was jumping around, and we had made his day! Everything I sent had been downloaded onto his iPad, and he was gleefully going through the pictures and videos over and over. Mission accomplished?

I sure thought so, but Delta wasn’t done. A certain flight attendant named Nicole had been on both the flights that I had been on and had heard me talking about Jonah and his intense interest in her employer. During the flight, Nicole sat down next to me and asked me questions about Jonah and my son. She asked what Jonah would like best from them, and then this sweet woman brought me a Delta swag bag filled with goodies, a snack box, a lunch box, baggies, a coffee cup and extra packets of cookies.

Some people may not get why this was a big deal. It was just a few pictures. The video was only a few seconds long. The items donated aren’t that expensive. All those things are true, but for Jonah it meant so much more. This boy faces challenges in terms learning, growing and connecting with others on a daily basis. The world assaults his senses in a million ways, and he doesn’t have the words to communicate all of his needs. He works hard to overcome this. His mother works hard to help him. And those few pictures, videos and goodies told Jonah and his mother that they matter. They are important and people care! It communicates they are not alone in this journey of autism. And that makes every little effort given worth more than you may know.

Thank you, patient passengers. Thank you, kind captain. Thank you, Nicole. Thank you, Delta! Thank you!

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Follow this journey on The Musings of Mo.

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