When You Parent Differently Because Your Child Is Medically Fragile

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Conversations you have with your friends about your kids are quite different when your child has a life-threatening illness. Today my friend, Amanda, and I talked about what the plan is for our boys. What is their purpose, and how much will they experience before their time is up? We talk about all the things we want to give them and pack into their lives because we don’t know what tomorrow will bring, and we want to make sure they’ve had full and amazing lives.

I believe parents in the medically fragile community breathe air a little differently, and we also plan our days differently. The things other parents might worry about — “Will they make the basketball team?” “Will they have friends at school?” Will they pass their spelling test?” — just aren’t high priorities in our lives.

Instead, we might mark our days with needle pokes, blood draws, medication schedules and therapy appointments, and we measure milestones with new hand coordination, new words, better motor skills and a better ability to concentrate. Planning a year from now, a month from now or a week from now isn’t always an option. We make and break plans constantly because our children’s health can turn on a dime. They stay home when others get to play because the germs and the allergens could be high that day.

Our children might live in a bubble so one day they can grow strong enough to take this world on full force. But our kids also get amazing opportunities. Nonprofits exist solely to make their days here more fun and have more memories. Organizations exist that make pillows, blankets, pajamas and care packages of toys and stuffed animals for their long stays at the hospital.

Success is measured when our kids can just be typical. When they’ve gotten through the day without choking, vomiting, passing out from low blood sugar or screaming in pain after recovering from surgery. When they can simply be outside playing with friends, or having a moment when they laugh and watch a movie. People might silently judge us and wonder why we’re so protective our of babies. They might think we do too much or shelter them too much. Therapists sometimes tell us they need less screen time and more play time. However, on days when breathing is really hard for the kids, or they are tired from medications or their system isn’t fighting that allergy the same as mine would, a movie or show might be the only way to keep them happy.

I believe we do things so much differently than the average parent. For example, I go to classes with parents of healthy children and feel like I’m painted in green because I can’t relate. I don’t know what it feels like to have only a pediatrician. I don’t know what it’s like to plan a play date without preparing for the worst possible outcome. My friends have become other parents in the community, doctors, nurses and therapists. Crying at appointments when I get bad news is standard, and high-fives and cheers when my child reaches the growth chart are common. You might also talk about what happens if your child dies and hear doctors talk about death.

kiss each morning a little differently when I wake up. Today I may get an amazing day at home, or I could end up in the hospital. Either way, I will make the best of what happens.

As parents of children who are medically fragile, we don’t always know what our kids’ plans are or what they will do. Planning for college could seem impossible when we don’t know if they’ll make it to high school. We hope they can find a way through this and deal with the pokes and needles. We hope the surgeries we opt for them are the right choice. We might always prepare for the worst-case scenario.

With that said, I believe we always know how blessed we are to have this time with these amazing miracles. We’re taught so much more than we ever expected. We inspire others on our journey and meet so many amazing people. I believe this journey is a blessing and a curse, and it’s a journey I can’t imagine not being on.

Follow this journey on Von’s Super Hero Facebook page.

The Mighty is asking the following: What’s one thing people might not know about your experience with disability and/or disease, and what would you say to teach them? 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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Heartbreaking Photographs of Their Late Infants Help Parents Cope With Loss

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When Helen and Kenny Sawyer lost their daughter Mia just two days after she was born in September 2014, the last thing they wanted was to take pictures of their baby girl. But after being put in touch with a volunteer photographer from the U.K. charity Remember My Baby, the grieving parents changed their minds — and the images of little Mia are now something they’ll cherish forever.

“Initially I was horrified at the thought,” Helen Sawyer told The Mighty in an email. “However, these images of our beautiful little girl are invaluable. The wonderful photographer gave up her personal time to capture these for us and without this charity we would not have these wonderful images to treasure.”

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“[Mia] was covered in tubes and plasters for the two days she was alive – these photos show us what she would have been like as a healthy baby,” Sawyer added in a press release. “She lives through these photos – she was here and she was alive. It was a short period of time, and we’ll never see her speak or laugh or even open her eyes. But we have these beautiful images and we’re so proud of them.”

Remember My Baby is a U.K.-registered charity that helps bring comfort to bereaved parents experiencing the loss of their baby before, during or shortly after birth, according to a press release. “Our goal is to offer this volunteer service to all parents suffering the loss of their baby in every hospital and birth center across the UK,” co-founder Anna-Marina Dearsley said in the release.

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Paige Warren and partner Luke Farnham explained why they wanted the charity to capture images of their son Zachary (pictured above), who was stillborn in February 2015.

“They edited the images taken of Zachary and converted those to black and white which made him look healthier, [so] I can now show those pictures to my daughters to help them remember their brother,” Warren said in the press release. “In the images we took ourselves his lips were dark and he had started going purple and it would have scared my kids, it’s not something they recognized as a baby. I’m so happy I have these to share with them.”

Several other parents have shared their stories and images as well, including Danielle and Craig Melville, whose baby girl, Harper-Shae, was stillborn in October of 2014. The couple’s son Fletcher died shortly after birth in 2009, so having photos to remember little Harper-Shae was especially important to them.

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“It’s horrible to be in this situation twice, but having these pictures really helped me – it made it a lot easier for me,” Melville said in the press release.

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Visit Remember My Baby’s website and Facebook page to learn more.

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The Remarkable Way a Family Carried on Their Late Son's Legacy of Kindness

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Hilary and Zac Cheney have found a unique way to help spread the joy to others that their late son brought into their lives.

In 2012, Carson Cheney’s family visited the Glenwood Cemetery in Utah. Carson and his big brother were playing in the cemetery while their father took pictures. Then, in a tragic accident, the 4-foot-tall, 100-year-old gravestone Carson was hiding behind fell on top of him. He later died at the hospital from his injuries.

When the headstone fell on him, Carson was holding his favorite toy, a blue Hot Wheels car.

“He loved cars,” Hilary Cheney told The Mighty, “loved them.”

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This picture was taken just 45 minutes before Carson was taken to heaven. He held onto this car the whole time. I carried his car around for days until I was afraid I would loose it,” Cheney wrote in the caption on the photo below on the Carson’s Courage Cars Facebook page. “It’s now displayed in a glass vase. Carson posed like this all on his own and we wonder if somehow he knew he would be leaving us so he wanted to send us a picture of strength and courage.”

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On the one year anniversary of Carson’s passing, his family searched for a way to mark the painful occasion. Hilary Cheney and her family decided to quietly hide a handful of Hot Wheels cars in public places for other kids to find. They hid them with notes commemorating Carson and called them Carson’s Courage Cars.

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“We really wanted people to feel special,” Cheney told The Mighty. “If you’re just having a rough day and you find a gift, it can change your day. Carson really had a unique way of making people feel loved.”

Cheney thought it would be something the family did every year on the date of the accident, but it soon took off.

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People who found the cars posted messages about it on social media and began paying it forward. Then, Cheney’s family all across Utah became involved, and relatives leaving the country on vacations would take cars and hide them abroad as well.

“He made friends everywhere he went,” Hilary Cheney told The Mighty. “I don’t know how he did it, but he just connected with everybody. We really felt passionate about finding a way for him to continue to do that.”

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Carson’s courage cars had turned into a global phenomenon with people all over the world participating and cars being found in places as far away as Japan, Germany and Sweden, CNN reported. There’s even a store owner in Wisconsin who told the Cheneys he hides 100 cars every Sunday.

The Cheney family takes great pleasure in what has become Carson’s legacy of kindness and courage.

“We all need courage,” Cheney told The Mighty. “We’ve needed courage to survive this, to keep waking up each day and just move forward. We’re just hoping that somehow we can help people feel good. Just like Carson would do for people when he was here himself.

See some of the places Carson’s Courage Cars have been found in the photos below: 

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You can download the Carson’s Courage Cars tag here to print it out and hide with cars.

h/t Reddit Uplifting

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When I Make Casual Conversations Awkward as a Special Needs Mom

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One difficult aspect of being the parent of a child with special needs or medical complexities is that you sometimes can’t join in the casual camaraderie of the “you know how it is…” conversation with other parents. A typical scene might proceed like:

Parent One: “I just don’t know what to do about all that drool. She’s teething, so, you know…”

Parent Two: “Yes! Ugh. Well right now we’re starting on potty training, and you know how that goes.”

Special Needs Parent: “True! I’ll be right there with you on potty training once my daughter is out of the hospital, but you know how it is waiting for your kid to be off narcotics and paralytics, amiright?”

[Blank stares.]

Please don’t misunderstand my meaning here — I’m not trivializing the more everyday concerns of parenting. Rather, I’m illustrating that engaging authentically in casual conversation as a special needs parent can feel like being the oddball in a comedy sketch who throws out non-sequiturs and unexpected extremes that just don’t fit the tone of the exchange. I am perpetually Steve Carell from “The Office.”

Understandably, most people don’t have that shared experience to draw on, so the nod or the empathetic “mmmmmhm,” can’t follow, and the momentum of the conversation is gone. Usually people are kind in this situation and offer an encouraging comment or ask to learn more about my circumstances. These are appropriate, sweet responses, and my family and I feel blessed and valued by these exchanges. Nevertheless, that air of relaxed camaraderie dissipates, and a shift is made into a more formal and/or weighty discussion.

For me, missing the opportunity to have a casual conversation about what actually happened in my day is one of the biggest unexpected challenges of being a special needs mom. In these conversations, I know I can either avoid mentioning the medical parts of my day and maintain that casual atmosphere, or I can share my experience but expect to shift from being a “relaxed peer” into being an educator and grateful-recipient-of-concern. Again, I am truly grateful for the interest and concern others have shown us. And I actually love sharing our experience and educating when I can; it’s a big reason why I write here. But sometimes I just want to be able to chat casually over coffee.

To make an analogy, medical situations (doctor visits, medicines, hospital stays, machines, daily trach care) are part of my everyday life much like how a daily traffic commute is part of many peoples’ lives where I live. Both are necessary inconveniences. Both are worse some days than others. And just as commuters accept traffic as a given, medical situations are a normal part of my day. And like traffic woes, it’s comforting to share a passing comment about the daily grind with others.

Imagine that, as a commuter, you sit down to have coffee with a friend. You share a casual comment on your daily commute, except the person receiving it has no experience with traffic at all.

Commuter: “Ooh, took me an extra 25 minutes to get in this morning. I need some coffee!”

Friend: “What! Are you serious?!”

Commuter: “Yeah I think there was a stall or something? Anyway, which one is decaf here…”

Friend: “You have to sit in your car that long every day?”

Commuter: “Yeah… it’s not so bad. That’s traffic. Do they have a vanilla hazelnut now?”

Friend: “Omigod you shouldn’t have to do that!” [Staccato questions about whether you could avoid this unbelievably odd burden of “traffic” by doing xyz.]

Commuter: “… I just wanted some coffee.”

It’s unavoidable, really, because the reality is most people are completely unfamiliar with special needs parents’ “daily commute.” What we experience as normal is extreme and unusual to most other people. And that empathetic but casual tone of conversation that is so enjoyable is usually dependent on the participants having a shared experience in common. That’s why special needs websites, forums, Facebook groups and support meetings flourish — these are places that special needs parents can talk about the details of their day as casually as others discuss traffic, sometimes even humorously. A typical scene might go like this:

Special Needs Parent 1: “The other day I had to do an emergency trach change on the concrete outside of Target.”

Special Needs Parent 2: “Wow, that sucks.”

Special Needs Parent 1: “Yeah, and I got an Icee stain souvenir on my pants.”

[They laugh and continue drinking coffee.]

Maybe the commute analogy could be a useful awkward-conversation-converter, and I could let friends and family in on “the code.” The next time I want to make an offhand comment about my unusual-but-normal-to-me day, I could try remarking, “How ’bout that traffic, eh?”

Follow this journey on Yes, This I Know.

The Mighty is asking the following: What’s one thing people might not know about your experience with disability and/or disease, and what would you say to teach them? 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.

Lead photo source: Thinkstock Images

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Popular Beauty Blogger Reveals What's 'Wrong' With Her Hands in Emotional Video

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At first glance, beauty blogger Jordan Bone is just another stunning social media personality, but she revealed a secret to her fans: She’s paralyzed from the chest down and has limited mobility in her hands.

Bone posts incredible makeup tutorials on her YouTube channel, but after a few users asked what was “wrong” with her hands, the 25-year-old vlogger decided to share a different kind of video. The clip she posted, titled, “My Beautiful Struggle,” starts by showing her on the verge of tears after having a difficult time applying mascara.

“Teaching myself to be able to do my makeup again despite having paralysed [sic] hands after becoming a tetraplegic after a car accident 10 years ago was a massive achievement especially because I now feel good enough to teach others on YouTube!” she wrote in a caption on her Instagram page. “My video #mybeautifulstruggle is to inspire others to know that where there is darkness there is always light & was inspired by people rudely asking ‘why does she hold a brush like that?!’ ‘What’s wrong with her hands?!’ Anything is possible.”

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In the YouTube video above, which has nearly 3 million views, Jordan reveals that she was in a car crash at the age of 15. Jordan explains that she usually removes clips in her video where she’s using her mouth to hold makeup brushes or holding both of her hands together to apply eyeliner.

“Most of the time when I upload a video, I have questions about my hands. Truth is, I can’t move them, open them or close them,” she says in the clip. “To be able to do my makeup good enough to show you guys is a massive achievement for me.”

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Celebrities like Ashton Kutcher and Nikki Minaj have shared Bone’s story on their social channels, and she recently sat down with Cosmopolitan UK to chat about how she hopes to inspire others.

“I was very anxious to share My Beautiful Struggle because it was showing my subscribers, or anyone watching, one of the vulnerable sides to me,” she told the magazine. “I uploaded it because I wanted to let others know that they can achieve anything if they believe in themselves.”

“It’s basically a video to encourage people to live a positive life and to not put themselves down,” she concluded. “We all have struggles and we are not alone. I really hope it helps people whatever their ‘struggle’ in life may be. We all deserve to live an amazing life no matter what.”

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17 Things People With Rosacea Wish You Understood

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Rosacea, a disorder of the facial skin, is estimated to affect 16 million Americans, according to the National Rosacea Society. However, many of those people don’t know what the condition is. A survey by the National Rosacea Society found that 95 percent of rosacea patients had known little or nothing about its signs and symptoms prior to their diagnosis. Rosacea is not life-threatening, but because of its red and acne-like appearance, it can have damaging psychological and social side affects.

With all this in mind, The Mighty teamed up with the National Rosacea Society to ask people what they wish the world could understand about living with this condition.

This is what they had to say:

1. “We are honest when we say how painful it is. It feels like a frying pan is scorching your face. I also wish people would understand that rosacea is not just redness; it’s burning, red, swollen and painful eyes, sores on our face and  [it] gives us anxiety.” — Miller Michelle

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2. “[I] wouldn’t dare show my face without makeup.” — Estelle Harrison 

3. “Think before [you] speak when my skin is bad.” — Elizabeth Mary Dougan 

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4. “It’s always burned/stung every moment of every day…. I have to wear makeup when I exercise in public or have to explain that I’m fine 6,000 times. In fact, I have to wear makeup every day that I go out or at least one stranger will force me to acknowledge it or a child will innocently insult me.” — Elaina Kay

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5. “Flare-ups make you wish you could wear a mask.” — Karen Cosby

6. “It never goes away. Left untreated it gets worse with bumps appearing… But at least you don’t need to use blush very often.” — Katrina Hoening

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7. “I truly wish people realized how their perfume, scented lotions, air fresheners and smoking all affect and trigger my flushing. People just don’t understand the sensitivity with rosacea.” — Tonya Iverson

8. “No, I’m not having a heart attack. My face just looks that way when I exert myself.” — Kate Alexander

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9. “I wish people understood the psychological ramifications of rosacea. As someone with a diagnosed anxiety disorder in addition, I find myself utterly uncomfortable with interaction to the point of complete avoidance. I haven’t been in pictures since it came on two years ago, haven’t seen friends or former coworkers who have repeatedly asked to meet up. Truly it’s the side effects of rosacea, the shame and embarrassment, that really add to the difficulty of coping.” — Christina Bombina

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10. “I would like people to understand the simple fact that even eating the right foods and trying to reduce stress may still mean redness and break outs. It’s something many people have had to learn to deal with. Sometimes I can go for a month or more with no problems, only to find the next day my skin has changed.” — Sharon Cinnamon

11. “I hate when people look at my sores… It is a day-to-day struggle.— Carrie Bertram

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12. “Mine flares up at weird times and sometimes only on one side, which is even more embarrassing. And don’t even think of adding alcohol into the equation.” —Heather Loggie

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13. “Mine is primarily darkest on my nose and triggered mainly by emotion or stress. If I start even feeling like I’m going to cry or am getting stressed, everyone asks me if I’m sick because it looks like I’ve been blowing my nose all day.” — Elizabeth Locker Bennett

14. “It’s embarrassing and I don’t want to leave the house or I have to run home because I don’t want to be out during a flare. And yes, it hurts.” — Christina DiLallo Millbern

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15. “In high school my entire face would turn purple when I did cardio, along with flushing on my chest and upper arms. When I turned 21 and had a glass of wine it was the same effect. I wasn’t diagnosed till this year at 33.” — Laura Marie Hershberger

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16. “My face is clean. I wish they understood that my acne is not due to lack of personal hygiene but rather from rosacea.” — Sheila Cordellia Hicks

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17. “I hate some questions: ‘Are you shy?’ ‘Why are you nervous?’ ‘You don’t have to be red. Be cool.’ and ‘Relax.’” — Melissa Moreira

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*Answers have been edited and shortened. 

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