13 Tips for Moms Who Want to Make Hospital Time Easier

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Just over six years ago, our son Lucas was given a diagnosis of developmental dysplasia of the hip (DDH). During that time, I have spent more hours in hospital wards and waiting rooms than I care to remember. Hospital appointments have pretty much become part of our life, and while Lucas did have three clear years of treatment, there were still annual checkups and x-rays.

I have some tips for all you hospital moms that I really hope someone out there will find useful:

1. Be nice to everyone — not just the top doctors, but also the porters who wheel your child down to theater, other parents, cleaners, the nurses and others. Being nice, smiling and taking an interest in others is easy, and it also means they might want to help you and go out of their way to make your stay easier.

2. This is not easy, but try not to show your child your fear. If you need to cry or vent, walk away, go and get some fresh air, but don’t let them see your pain. They need you to be strong for them. When Lucas was bought back from theater this time, we had an hour or so when he was in extreme pain, and I wanted to stop it so much because I couldn’t bear to see him in pain. I stood away with a nurse for a couple of minutes, got myself together and then went back to his side and made sure he knew it was going to be OK — and it was.

3. Try to get a bed for your child by the window. This isn’t always possible, but if you can, it lets in daylight, and since hospital wards tend to be hot and stuffy, a little fresh air is lovely.

4. Find out where the linen cupboard is. This way you can change sheets yourself, find towels and even make up your own bed if you are lucky enough to have one.

5. Know your route to the hospital, and time it if you need to. Find where you need to go, what time you need to be on a ward and also be sure about the parking, how much there is and if you need to pay. We are lucky at the RNOH that parking is free, but this isn’t the case for everyone, so it is worth looking into.

6. Try to get some sleep if you can. Sounds hard when you are woken up every couple of hours to give your child medicine or speak with consultants, but the more rested you can be, the easier it is to deal with events that occur during your stay.

7. Take bottles of water and snacks in with you. Yes, there are shops on site, but if you are in for a while, this can get expensive and the selection isn’t always that great.

8. Take in antibacterial spray and wipes as well as hand gel. You can’t be too careful.

9. File everything. When we started out on our DDH journey, I had odd bits of paper in Lucas’s red book, but it soon became apparent this wasn’t the right solution. These days where we go, the grey file goes, and it has every document in it ever issued.

10. Don’t throw your magazines and newspapers away — pass them onto other parents and given other children on the ward comics you have finished with. Little things go a long way when you are on the inside.

11. Understand this isn’t forever. I know we were in hospital for endless weeks and months, and for that I am so grateful, and of course I don’t know what lies ahead of Lucas. Take in books and magazines, a tablet, some work, games and puzzles.

12. Use the Monkey Wellbeing resources to talk about the time in hospital and explain to your child what might happen and how they might feel.

13. Make friends with other parents. Strike up conversations. Meditate. Do what you can to make this time easier for you, your child and the rest of your family. In time, I hope things will get easier.

Mom with her two sons

Follow this journey on Just Because I Love.

The Mighty is asking the following: Create a list-style story of your choice in regards to disability, disease or illness. It can be lighthearted and funny or more serious — whatever inspires you. Be sure to include at least one intro paragraph for your list. 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.

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22 Movies People With Chronic Illnesses Watch on Rough Days

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It’s a time-honored tradition: Curling up on the couch with a good movie when you’re not feeling well. For people with chronic illnesses, though, “not feeling well” is often a way of life. So they know exactly which movies will help keep your mind distracted on particularly rough days.

We asked our Mighty readers with chronic illnesses what movie they love to watch on tough days. Consider adding these to your Netflix queue.

Here’s what they told us:

1. “Kill Bill”

“Makes me feel powerful to see a woman close to my age function and move so well.” — Amber Wandmaker

2. “Guardians of the Galaxy”

“Something about a group of misfits saving the universe makes me feel better.” — Sarah Wright

3. “How To Train Your Dragon”

“Because dragons are awesome.” — Cat Latuszek

4. “Mulan”

“I figure if she could save China, I can deal with this.” — Sharon Esley Horning

5. “My Cousin Vinny”

“No matter how many times I have seen it and can recite it verbatim, it still makes me laugh.” — Jennifer Schmidt Manning

6. “Twister”

“There’s so much energy played by the characters that it’s motivating and makes me look forward to the next day or two when I know I will feel great for a little while. I know of no other way to explain it other than, for some reason, this movie gives me and my body inspiration, something to look forward to in the not too distant future.” — Sherri Paul

7. “Frozen”

“The song ‘Let It Go’ is my reminder to let go of my frustration when things don’t go the way I want.” — Hannah Mason

8. “Grease”

“The songs in this movie make me happy. Which in turn send out positive endorphins. I have fibromyalgia, and when it flairs I love anything that helps me think about something else.” — Sharon Pitt

9. “Cake”

“Jennifer Aniston portrays a chronic pain sufferer very well. When I watch that I don’t feel alone.” — Jory Pradjinski

10. “It’s A Wonderful Life”

“It makes me want to keep on pushing through the pain for myself and my family. I keep the DVD behind the TV when I need it.” — Linda Moore Mussa

11. “Harry Potter”

“I have the whole DVD set so it’s marathon time when I’m a little down or have a rough day. I think it’s a childhood thing for me, plus sometimes I feel like the odd one out of my friends (like Harry) but in different ways. But no matter what, the wizarding world is where I escape and at the end of the movie I feel a lot better!” — Alissa Patterson

12. “X-Men”

“My illness is genetic, so watching a bunch of awesome mutants makes me feel a little bit happier and more comfortable in my skin.” — Alex Kendall

13. “Rudy”

“I love seeing him hoisted into the air after putting in so much hard work and heart into being an athlete, even if he wasn’t built like one.” — Jennifer Northrup

14. “Steel Magnolias”

“Although I don’t have them same diagnosis as Shelby did in the movie, my family and I have had similar discussions as the family did in the movie. I’m a bawling mess all the way through it, but it comforts me by reminding me that my family cares and will do anything for me.” — Julie McCoy Laverack

15. “Under the Tuscan Sun”

“Because it’s a good reminder that life gets stormy at times but there will always be clear days again.” — Amanda Keehn

16. Star Wars”

“My bad days are bad after a craniectomy. This lets me focus on something besides how bad everything hurts.” — Jenafer Bauerle

17. Lord of the Rings”

“The theme that rings true in the trilogy is teamwork. They all had roles to play and in the end, being supportive of each other won the day.” — Ethan Terry

18. “The Lion King” 

“I’ve always watched it when I was a kid and not feeling well. It’s one of the reasons I have a Simba tattoo!” — Sarah Utterback

19. Mrs. Doubtfire”

“Robin Williams always makes me laugh!” — Sarah Codington

20. Jurassic World”

“I’m a firm believer that you can’t be sad while looking at Chris Pratt.” — Amanda Baldassari

21. “Cinderella Man”

“To see what love and human spirit can overcome. Great movie!” — Gayla Joe-Huckaby

22. “What About Bob?”

“It makes me laugh and get perspective — remember ‘tiny steps.'” — Amy Sue Inskeep

Do you have a favorite movie to watch when you’re having a rough day? Let us know in the comments.

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What My Parents Told Me Whenever I Felt ‘Different’ From Other Kids

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Like many children, I was bullied and teased throughout my school years. I was profoundly deaf in one ear, my legs twisted in instead of out, I had severe permanent skin depigmentation on my neck, chest and stomach, and I had to wear very strong glasses. Looking back, I also had sensory issues that probably would have been identified if I were a child today. Apparently, I was “different” from all the other kids, and they made sure to tell me about it.

But my parents worked hard to make sure I never felt “different.” The things that could have been considered impediments were just part of who I was. My parents constantly encouraged me that I will always have something worthwhile to offer, no matter what anyone else says — that everyone has a special gift or talent to share with the world. They inspired me to find the things I could do, instead of focusing on the things I couldn’t do.

My parents always encouraged me in whatever activities I wanted to undertake. I had a hard time running for any distance, but baseball became my passion from a young age. I would spend hours poring over statistic books and sports magazines and watching my favorite major league team play. I had difficulty with handwriting and anything that required fine motor skills, but I excelled in spelling, eventually reaching the state spelling bee twice. My single-sided deafness made it hard to play group games on the school playground because it was too noisy to hear, but in carving out a quiet place, I was able to have meaningful conversations with kids who would later become lifelong friends.

My parents told me I was enough, over and over, day after day, even when I didn’t feel like it. They made me feel like I was enough by always encouraging me to find my strengths and offering praise when I improved in any area I struggled in, however small the gain.

Fast-forward, I’m all grown up and now the mommy of a precious little boy who is profoundly deaf in both ears and also has severe sensory processing disorder. I desperately want to give him the same gift my parents gave me, the gift of enough. I want him to feel loved, talented, confident and full of worth. Even — no, especially — when he realizes that he may be a little “different,” too.

I want to help him find the things that he will excel in, the things that will bring him a sense of accomplishment, and help him focus on those while instilling in him the courage and tenacity to try to improve in the areas where he has challenges. He has so very much to offer this world, and I never want him to forget it just because his talents may look “different” from someone else’s.

Despite any limitations that seem to stand in our way, each one of us has some unique and special gift or talent to offer, no matter what anyone else says.

girl all dressed up
Sara all dressed up.

The Mighty is asking the following: What’s one unexpected source of comfort when it comes to your (or a loved one’s) 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 Submit a Story page for more about our submission guidelines.

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16 Simple (but Unforgettable) Acts of Kindness Witnessed in a Hospital

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Acts of kindness happen everywhere, but it’s especially nice to know moments of pure human goodness can occur in the midst of uncertainty or potentially scary times.

Our friends at Suspended Coffees, an organization dedicated to spreading worldwide kindness, asked its Facebook community to tell us about an act of kindness they witnessed while in the hospital.

These short stories are beautiful reminders that even at our lowest moments, there’s always room for kindness:

1. “Last year I was in hospital to have my gallbladder removed. It was only supposed to be an overnight stay, but complications meant I spent six nights in the acute care ward. This meant I was away from my three boys with special needs. They handmade me a get well card. I sat the card up on the nightstand, so I could see it every time I turned my head. The morning I was getting ready to be discharged, the physio came in and went through some exercises with me and left a rolled up towel in front of the card. It wasn’t til I got home that I realized the card must have been left at the hospital (some 75 kilometers [45 miles] away). A week later I received a letter from the hospital, signed by the day-shift nurse who had cared for me through most of my time in the ward, along with the boys card. Her letter said, ‘I found this when I went to strip your bed and knew you would want it.’ I have to admit, I cried many happy tears over this simple, very kind gesture.” — Sharyn Lilley

2. “When I had surgery for breast cancer, my surgeon met me in the pre-op room, put her arm around me, walked me into the operating room, and said a prayer with me. It brought me such a feeling of peace.” — Pamela Ingram

3. “After I had my second open-heart surgery, one of the nurses would come on her coffee break and rub my back because she knew my family could not be there. She was awesome.” — Venae Gyuka

4. “My dad was in the hospital after a motorcycle accident, which left him in a coma for three months. Although he had his gauntlets on, they had damaged his fingernails and hands. One of the nurses stayed in after her shift, soaked my dad’s hands in warm water, cleaned them up and massaged his hands with cream.” — Paula Ennis

5. “My 11-year-old daughter went in for surgery. Terrified. We sat cuddled in the waiting room while her father filled out the paperwork. One of the volunteers brought us a blanket. The ladies quilt blankets for the little ones. At 18 she went in for the same surgery and took the blanket. She’s 20 and still keeps it around. It’s a silly scrap quilt! Made with love, given to a very scared little girl.” — Biana Weatherford

6. “Just recently I had outpatient surgery and my ride home didn’t show up to get me. One of the nurses that wheeled me out to wait for my ride, saw that I was still waiting and very upset. She called a cab for me, stayed with me till it came and paid for my ride. She missed her lunch break for me. She is the sweetest, nicest and kindest person I have ever met.” — Gayle Weaver-Njie

7. “I was 15 years old and in the ER because I was suicidal. The nurse who was watching me told me that a few years ago, her own daughter was in the hospital for the same reason, but now she was happy and off to college, so there was hope. She then proceeded to brush the hair out of my face and tuck me into bed. Throughout the night, she came back in to check on me, and I had never felt so safe. Nurse Jackie, if you ever happen to see this, thank you for that act of kindness. It’s stuck with me and kept me going through so much.” — Sydney Neumann

8. “When my daughter was in the NICU, her teddy was accidentally bundled in with the dirty sheets. One of the nurses went down to the laundry and sorted through the bins of soiled bedding until she found him. She was on her break.” — Andrea McCrindle

9. “When I was a kid, I had to have surgery and was scared out of my wits, and my momma could barely keep me distracted. Well, in comes this lady — no scrubs or official looking clothes at all — with an armful of stuff: a bear, flowers, a card that had some money in it and a little basket of goodies. Turned out this lady visited the little kids having surgery every week to bring them stuff to help them get ready or help them recover from surgeries. She was a surgeon from another hospital who would come on her day off, using most of her check to donate stuff to the kids at the hospital. She would stay and talk if she thought you might have needed advice from a doctor, too.” — Becca Britton

10. “My daughter had a short stay in a children’s ward just before Christmas a few years ago. A huge biker gang fully clothed in leather jackets came in and handed out lovely wrapped Christmas presents to every single boy and girl on the ward. It was so great to see how uplifted the children and parents were and the ward was completely filled with smiles and laughter. It was truly wonderful.” — Hayley Louise

11. “My teenaged son had to have lung surgery on his 17th birthday. He was in the pediatrics ward, feeling glum and in a lot of pain. His physician assistant found out it was his birthday and she rounded up a cupcake and present and a few nurses to come in and sing ‘Happy Birthday’ to him. It was an act of kindness to cheer up one patient, and it was much appreciated!” — Terez Pemberton Matkins

12. “My sister was in the hospital the last two years of her life. My mom only left her side to go home to sleep. There was a cleaning lady who came through at night, who would sing hymns to her. She had a beautiful voice.” — Christina Fetter-Frost

13. “I was hospitalized for over a week and a very nice nurse brought in some conditioner and spent an hour brushing out the massive knots out of my hair. I thought I was going to have to shave me head. She was amazing.” — Dora-Rose Blixrud

14. “My 6-year-old son was in the hospital this past Christmas Eve. Total bummer for a little kid. Well, he talked the doctors ear off about football. A little while later the doctor came back with a brand new football in the package still. I was blown away.” — Jordan Vazquez

15. “As a nurse, I once witnessed a doctor who knelt at the side of the bed and prayed with a patient who had terminal lung disease.” — Kathie Maxwell

16. “I was 6 years old and in the hospital. I was scheduled for surgery the next day, and while I tried not to show it, I was frightened. I didn’t know any of the other kids, but introduced myself and played a little. The next morning the orderlies came to take me down to the operating room. All the kids on the floor walked me to the elevator! I was so moved, even at the tender age of 6, I knew this was something special! But it gets better. As I was being taken back to my bed after the surgery, when the elevator doors opened on my floor, all the kids were waiting for me and walked me back to my bed! It’s been almost 50 years, but the kindness those kids showed me has stayed with me and moved me to help others whenever I get a chance.” — Terri DuVal Riffle

Have you witnessed an act of kindness in a hospital? Tell us about it in the comment section below.

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The Problem With That Viral Story of a Wrestler With Down Syndrome

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You’ve probably already read the currently trending article about Devin, a popular high school wrestler, letting Andy, a fellow high school student with Down syndrome, win a match against him. A variety of news organizations covered this story with clickbait-worthy titles and labeled this “act of kindness” as true sportsmanship.

Let me preface this piece by saying I do not blame the teen for trying to do something he thinks is nice and respectful. He seems like a really good guy. Like someone who wants Andy to feel good about himself. But what’s more concerning to me is that this story, like a ripple effect, negatively affects the non-disabled community. When we bring up issues with these types of stories, I believe it starts another worn-out conversation about how ungrateful we disabled are — how no matter what the non-disabled community does, it’s never enough. In this game, it feels like they are “letting” us participate and “bending the rules” to allow us in. It’s stories like these that contribute to their mistaken perceptions of us, and it’s stories like this which are detrimental to our equal participation in society.

I was mentioning to my husband the other night, “You know, situations like this never really ever have to happen.”

He asked, “What do you mean?”

I replied, “Situations where Andy doesn’t have any other opportunity to participate in competitive wrestling, or even any other combat sport — wrestling, karate, boxing — because it’s consistently [not] been an option.”

With the exception of Judo as a sport in Paralympics, it seems like there aren’t many opportunities for disabled athletes to compete in combat sports. It’s 2016 — we are past the sideshow days and being on display for the enjoyment of the gawking audience. Is there a fear that if there is a willing participant, there is a promoter ready to exploit them? There might be, but should that stop our community from being able to compete? There is a segment of our disabled population who want this opportunity, and there is a need for disabled individuals to participate on all levels. If Andy is participating in his high school with his peers, then shouldn’t he be able to participate in physical education and competitive sports equally, just like his peers?

I could compare Andy’s situation with my own journey in boxing. I remember quite vividly in the beginning, none of the trainers at the gym wanted to hold mitts for me. “Holding mitts” means that during the class, the coach would go around to all of the students, giving them an opportunity to do a punch combination on the mitts they held. In my situation several years back, every time the trainers would go around the class, they would stop right before getting to me and instruct the class to do a quick cardio break. Once the break was over, we went back to hitting the bags, and the coaches would resume going around the class with the mitts, carefully bypassing me. After about a year of this, they started to respect my participation in class and would include me, but there was always a caveat.

“Midget boxing” is a joke, and it’s embarrassing as someone who spends hours honing her craft and polishing her technique to match another boxer at my gym as a sport, not a sideshow. But because I don’t look like everyone else, and I look like one of those dwarfs being exploited for cash and laughter, there is a distance between my participation in boxing and the others. A sort of “safe space” where I can join in on the sport but still not be treated as an equal competitor. I’m treated as “special.”

I believe this is an almost identical scenario that Andy is in. He is “allowed” to participate but not compete on an equal level. What is a 16-year-old high school student like Andy, mainstreamed into the school system, to do if he wants to participate with his peers at school in every area?

And since I don’t want this to be just a complaint, I want to offer a solution. I think the first step to fixing this issue is getting more participants. What I want, and others who are skilled in combat sports, is for the adults in the disabled community to start participating. I want the parents of disabled youth to encourage your children participate in any sport they want. And I want full support of organizations like the Special Olympics so that better opportunities will happen for athletes like Andy.  Because with better opportunities, brings more competition. And with more competition, the more chances for someone like Andy to truly win a match.

Lead photo source: CNN video

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When My Son With ADHD Asked a Schoolmate With Autism to Play

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I sat across from his teacher.

I was anxious about what she was going to tell me.

He had been in trouble over the past few months: disrupting class, messing around on the playground — nothing too serious, but enough to make me anxious at his latest parent teacher meeting.

“J is doing well in class,” she smiled. My husband David and I exchanged a confused look. “Really?” The surprise was obvious in my voice.

She smiled and nodded. “He has really turned a corner. He is sitting still, which is a huge achievement, and he is participating in class discussion.”

“That’s such a relief to hear,” I confessed.

“The school is aware of the situation at home with all you do for Ethan.” (My eldest son Ethan has Hunter syndrome.) J seems to really understand his own actions and the reasons for them. He is able to articulate what ADHD is and how it affects him. We believe this is down to you guys, obviously, and the therapy you have him in currently,” she smiled.

I watched as she paused, almost debating whether or not to say the next sentence. Then I saw it.

Her eyes were damp as she opened her mouth and began to speak. “J has made a new friend here in the class.”

David quickly answered saying the child’s name. I laughed, telling him I didn’t think the teacher was testing us.

She smiled. “Yes, so you are both aware of this. What you are probably not aware of is that, for the first time since this boy started school here, he played with another boy on the school yard. He engaged. He laughed and played. The other boy was your J. Your son brought him out and included him,” she was definitely fighting back tears now.

“His parents asked me to thank you for raising a caring child like J.” She paused to gather herself, and I felt my own eyes dampen. “He has autism and was never social, never had a friend and was never included until now,” she wiped under her eye.

“Wow,” David smiled. I nodded, afraid if I spoke at that point no words would come out. We sat in silence for a few moments.

“So, J is doing really, really well. But…” she tapped her watch. We both sighed. We were both in trouble.

“Okay, we know,” David held his hands up. “We sometimes — okay, we often get up late or are preoccupied with getting Ethan ready, and we leave too late, get caught in traffic and well, yeah, J ends up being late.”

“Sorry,” I offered.

“OK, I know it is hard for you, and I do appreciate that. I do, guys,” she titled her head. “But J has to be on time. You have to get up earlier and get him here on time. It is so very important.”

We both nodded, and like scolded schoolchildren we promised the teacher we would try harder.

We left the meeting feeling in awe of our middle son J. We weren’t expecting to hear how much compassion he had shown to another little boy and how much that had helped that little boy, which really warmed our hearts.

We got home and reported how well he was doing in school.

We asked about his friend and why J asked him to play. “He is just a boy, Mommy, he is different from all the other boys, I like that about him.” He paused, “Mommy, he can be a little like Ethan sometimes, and then I think maybe Ethan would be like him if Ethan could play with me.” I kissed his forehead as I felt the pain hit me right in my heart.

“You’re a good, kind boy,” I whispered trying not to let my emotions show.

“Mom, wouldn’t the world be boring if we were all the same! You’re always saying that, and you’re right!” He laughed as he skipped away.

Our time-keeping has improved.

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Ger’s sons.

A version of this originally appeared on FireflyFriends.com

The Mighty is asking the following: Share with us an unexpected moment with a teacher, parent or student during your (or your loved one’s) school year. 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.

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