When my youngest daughter was born with Down syndrome, all I knew were stereotypes. I wrongly assumed our life, and my daughter’s life, would be defined by limitations. I was wrong. What defines our life is love.

I won’t say parenting a child with Down syndrome is easy because parenting is not easy, and parenting a child with a disability does present extra challenges. But even though there are hard days and hard moments and hard hours, those do not define our lives. What really matters — what is most important — is love.

There are beautiful and perfect moments. There is the good, there is the joy, there is the pride we feel for our kids. There is the excitement of even their smallest accomplishments. And always, always the unending love.

If you ever see a child with Down syndrome and think you could never do it, yes, yes you could do it. Because of love.

And I wish people could see what I see, this life we live.

I wish people could see we take family vacations, we grill chicken in the backyard, we eat dessert and we celebrate birthdays. I wish people could see the love we live with.

And I hope next time you see a parent of a child with Down syndrome, rather than thinking of how hard you imagine it could be, you think about what matters most. I hope you see the love. I hope you think of these beautiful moments shared by our Mighty parents:

“Every member feels that fierce love for our Hudson.” – Dionna M.

“[My son] and I enjoying life!” — Ingrid M.

“This was a few weeks back. My wife was working so my co-pilot and I took a trip to a Jeep show. He gets to ride in the passenger seat in the Jeep, since I can turn off the airbag, and he almost always falls asleep. He also instantly wakes up when I turn the engine off.” — Kevin P.

“This is right before his appointment with his respiratory specialist. Every week it’s multiple doctors appointments and physical therapists. No matter what challenges he is facing that day, this is the smile I get from him. He’s a strong little man and in return he’s made me a stronger person.” — Amanda S.

“My 26-year-old son with his niece… just love!” —  Denise B.

“This is my son Johnny with his siblings. Johnny has blessed each and every member of our family and made me a better person. Each child I am blessed to have has had their share of ups and downs, but they all bring more joy and love every day!” — Emily M.

“Miley, 9, showing her goat, Rita, at the fair for the 4H goat show. She worked all summer getting her ready. Her hard work paid off and she got a blue ribbon and a callback for showmanship.” — Missy A.

“Haven’t met a person yet who can have our sweet Evan smile this smile at them and not smile back with everything they have. He is changing the world one smile at a time and our lives are immeasurably better with him in them!” — Blair P.

“So much love for this little [girl]. We’ve had some challenges but she’s taught me more about life in her short seven years than I could ever teach her! Hope is amazing” — Stacy R.

“I feel like this picture shows the love between Izzie and one of her older brothers, Grady. Both of her brothers are a great help to my husband and I when it comes to Izzie, but not because we make them or even ask them. They just step in and do what they can because they love their sissy so much!” — Tiffany J.

“My favorite kids.” — Kimberli P.

“This is our Samuel. He is such a joy to our family and all who know him! He truly lives life to the fullest and is a daily example of how life should be. Can’t imagine life without him! Thankful God chose us for his parents.” — Jenny E.

“This photo is of me and my daughter, Heather, at Disney World early this year. She is truly the heart of our family. She turns 40 in October. We will be celebrating her birthday at Disney this January. I absolutely love traveling with her!” — Suanne J.

“My sweet Harlan. His due date was World Down Syndrome Day but he arrived a month and a half early. It was suspected shortly after his birth that he had Downs Syndrome and later confirmed through genetic testing. We wouldn’t change him for the world. He is loved beyond measure.” — Crystal  E.

“My son, Cree, who will be 3 in less than two weeks with his big sister who will be 7 the week after. I think this shows their overwhelming love for one another. He is the love of our lives.” — Angel W.

“Our oldest, Cori, and our youngest, London. These two have such a love/hate relationship like any typical toddler sibling duo would, but at the end of the day, London looks up to her big sissy and always needs to give her a kiss good night. Cori has so much bravery, love and strength. I’m so thankful she shares it with us all. She is truly the glue in our family!” — Jamie D.

“Love.” — Caroline H.

“This is Owen. He is 7 and loves baseball, especially the St. Louis Cardinals. He loves playing ball with his brothers, dancing and playing in the backyard.” — Christy L.

“Samuel’s turning 12 this year. All a wonderful journey. He brings a smile and a hug to everyone he meets.” — Barry L.

“My baby sister, Helen. She was the love of my life, I miss her sweet smiling face, she passed away last year at the age of 59, she is now God’s angel” — Julie H.

“Vincent brings us so much joy. He smiles at me until I smile back.” — Susan F.

“Loves of my life!” — Lauren G.

“Our son, who was adopted from Ethiopia, is very much loved by his sisters (and his whole family)!” — Anna V

“Our beautiful Maria.” — Lorena C.

“No words necessary for this picture.” — Jennifer H.

“The love my parents and son have for each other!” — Lori G

“Adelyn Paige. She has brought us so much joy since the very first ultrasound! We wouldn’t change her for the world.” — Katie S.

“Hiking with cousins and auntie and brother and mom. Family hiking in Colorado.” — Rebekah L.

“Will helped his dad and big brother build this Lego rocket over the summer! They had a great time together.” — Judi H.

“This is my daughter, Bre. She is 9 years old, will be 10 in November.” — Candis H.

“Our sweet Hannah has brought blessings for our family! She is adorable.” — Dayana A.

“My sister and niece with my son, Finnegan, at the F.R.I.E.N.D.S of West Tampa BBQ.” — Kathy B.

“Mackenzie — can’t imagine life without her.” — Karen L.

“My sweet 4-year-old, Sawyer, giving his baby sister a big smooch. Every day is a love filled day with Sawyer.” — Missy G.

“My best bud.” — Jennifer S.

“Charlie, 3 years old, with all of his siblings!”– John M.

“Our greatest joy, Anthony, 4 years old.” — Amy B.

This is life.

Full.

Rich.

Beautiful.

Ours.

Overflowing with love.

Thank you to our Mighty community for these photo submissions.

 

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I can walk, but I can’t walk very far, and it’s always with pain and fatigue. I can stand, just not for very long. I use a mobility scooter — a small version of an electric wheelchair — and walking sticks. 

Limited as my mobility is, I’m still made to feel like a faker. I don’t look sick enough. I don’t look disabled enough. I’m too young.

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If I get these comments when using medical aids, imagine what happens on the rare occurrence that I don’t use my aids and park in a disabled space, which I’m legally entitled to use. You got it. All hell breaks loose.

Just because I don’t fit society’s view of “disability” or conform to how a sick person should look and act. The much-used universal symbol for disability — the wheelchair — doesn’t always reflect reality. The definition of disability is often pigeonholed as someone requiring a wheelchair, or, at the bare minimum, crutches.

It’s so much more than that.

Painful, invisible conditions exist that entitle a person to a disability parking permit. Unfortunately, as has been demonstrated all too often of late, these invisible conditions are often assumed illegitimate by strangers. We are branded as fakers and con artists. Told over and over that we don’t look disabled enough to be entitled to a disability parking permit.

Take the recent story of Justine Van Den BorneWhen Justine, who was diagnosed with multiple sclerosis at 35, parked her car in a disabled space at a shopping center in Melbourne, Australia, she had no idea she would return to see a nasty, anonymous note stuck on her windshield that read, “Did you forget your wheelchair?” It was placed directly above her disability parking permit on the dashboard.

How could this be? Simple: Justine walked into the shopping center.

Our opinions and conclusions are greatly influenced by what we see. If someone looks healthy, they obviously can’t be too sick, right? Too often these judgments are completely wrong. I ask you this: Would you like to stop breathing on the idea that air, being mostly invisible to the naked eye, isn’t a real thing? No, I didn’t think so!

Invisible illness, ghost illness or whatever terminology you want to use, manifests internally, affecting the body from within. Many don’t understand what an invisible disability is really like for a person. Extreme fatigue, chronic pain, disorientation, dizziness, vision impairment, difficulty with mobility, cognitive issues, neuralgia…the list goes on and on.

We smile, we laugh and we get on with things, trying to live each day to the best of our abilities and be happy. Know this though: Despite my apparent healthy appearance and sunny disposition, I am legally disabled. I am battling a daily struggle. I am restricted by chronic pain, fatigue and neurological dysfunction, including numbness, weakness and intermittent spasticity in my limbs.

As I recently described in a conversation to my doctor: “My right leg has been numb from thigh to ankle for the past three weeks; my hands are tingling and short-circuiting like a failing strobe light; fatigue has knocked the wind out of my sails; pain is having a party at my expense; the nerve burn is kicking into overdrive in my arms…you want me to keep going?!”

These symptoms aren’t always obvious to the untrained observer, so even though my life is far from normal, I’m often mistaken for having a perfectly functioning body.

And I’m persecuted for it.

We need to start assuming the best of people instead of the worst. Don’t jump on a person with a disabled parking permit just because the driver or passenger isn’t in a wheelchair.

As Justine, who took the note as an opportunity to raise awareness for invisible illness, posted on Facebook: “I am sick of people like yourself abusing me on my good days for using a facility I am entitled to.”

If you see a disability parking permit but don’t see a wheelchair, don’t adopt the negative stance and assume the person has stolen it.

Yes, I understand that faking disabilities can and does occur, but I choose to believe that the number of instances is relatively low.

We need to advocate for the rights of the disabled community, but abusing people over a parking permit they are legally entitled to use is not the way to go about it.

Reporting the Ferrari double-parked across two disabled spaces without a disability parking permit might be a better place to start.

A version of this post originally appeared on Starbrite Warrior.

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.


My son, Caleb, is a looker. He’s only 5 years old, but at 36 pounds and nine surgeries, he’s a real head turner. That wasn’t always the case (says his mom who doesn’t believe a word of that). Even at 2 pounds soaking wet and not at all ready to brave the world, he was gorgeous to me. It took my son a few months to look like a real baby, but he came around. That scary NICU place let him out after seven months, and our days of surgeons, scrubbing in and gown-wearing were over. That feeling was actually short-lived but that’s another story.

One day, I found myself the victim of the proverbial rock and hard place. Our medical supplier called to say our coming shipment was denied due to insurance changes (non-fixable by me and with a full one day’s notice!). I’ll spare you the details and just say it was a nightmare. What does any mom in this situation do? My son’s shipment literally contained his nutrition, the one and only thing he “ate,” his tube-feeding formula. After the phone calls, tears and offers to trade kidneys, I turned to Facebook.

In my desperation and spilling of all emotions to a group of moms who would “get me,” I didn’t realize the settings of the group were open. That means all my friends saw my sad, desperate plea for help from other moms who might have extras of this particular formula.

Let me gently remind you — my horrifying problem involved my infant son not getting his only source of nutrition, his specialized formula, to my house. No, I couldn’t feed him something else, and no, I couldn’t buy it myself. A box of six cans was over $200 or more. At the time, it was the only thing he could get through his g-tube, and it was cost-prohibitive for us.

Jessica’s son

Then there was this friend… Delaware is lucky to have her. 

Remember how everyone saw my hideous post screaming to the winds for help? My friend, Jessica, saw the post and helped in a way that knocked the wind out of us.

Her son was in the NICU facing IUGR (intrauterine growth restriction), liver failure and coagulopathy (a condition that affects blood coagulation), and even so, she showed an incredibly generous and brave heart.

She saw my post and sent the information of the formula my son needed along with our address to several of her friends and family she thought could help. Explaining our situation, she told them if they could buy and send us the formula, to please do it. No yes or no answers needed to her email.  Jessica told them if financially they could help, to just do it. And did they ever.

Let me spare you the ugly-cry details, but that one Facebook interaction fed my son for months. Within two days, boxes of formula arrived at my doorstep.

The brave, generous and incredibly bold act she took upon herself to reach out to others, and even dig out of their own hearts and wallets to help my family — well, that just changed my life. I saw what the power of desire could do for the better. By the time our insurance situation was fixed, over a month had passed. Sometimes I still wonder… what would I have done otherwise?

Years later, I’m still moved that most of the kind souls who helped us in times of need didn’t know us from Adam or had never heard of my son’s medical conditions. (Caleb has short bowel syndrome, pulmonary vein stenosis and hypertension and gastroparesis.) They just sympathized with another hurting human being.

I try to make a difference wherever I go, because I remember that generosity of spirit. It was more than opening their wallet to my family; they opened their hearts to my son’s heart and literally his stomach.

Give a smile, a dollar, a handshake or hug. If it’s in your hand or heart to help, do it. Even in the most unconventional way, you could change a life. Because I’ll never forget that time my friend used Facebook to feed my son.

Caleb and Noah

Follow this journey on Hey Little Fighter.

The Mighty is asking its readers the following: Describe the moment a stranger — or someone you don’t know very well — showed you or a loved one incredible love. 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.


As I learn how to navigate this new pathway of living with disease, I’m realizing some folks naturally seem to know how to step up and be a friend in this difficult situation, while others mean well but struggle to know how best to help and be supportive. So here are four things you can do to be a good friend to someone with a disability or disease.

1. Love us.

While disability may impact who we are, we’re not defined by that disability. We are people, just the same as someone with a crooked smile or flyaway hair. See us for who we are and love us for our hearts and inner selves. There is much to love about us, from our quirks to our kindnesses, from our hobbies to our pet peeves. Yes, this still involves our challenges, but who doesn’t have challenges? When it comes right down to it, just love and care about us the way you do all your friends.

2. Learn about our conditions.

It means a lot to us when our friends take the time to read up about our disabilities or illnesses. Educating yourself about our conditions has many benefits. You’re likely to better understand why we do (or don’t do) whatever it is we’ve been doing. It might help you to know ways to offer assistance or just allow you to talk with us about what’s going on with our health. If you have a question about our condition, ask us. The gesture of learning about what ails us is touching and shows us how much you love us.

3. Listen to us.

Sometimes we just want to talk about our troubles. These may or may not involve our medical problems, but if they do, please listen. It can be hard to find someone to discuss things with when your health is dicey. Pity and dismay isn’t really the kind of reaction we’re seeking. Neither is it helpful to be assured it must be nothing when it’s something that’s important to us. Mostly, we just want a friend who will listen and give us their attention and understanding. We want a friend who will make no more of what we say than we do. Sharing our challenges isn’t a plea for being coddled — honest! Our feelings need to come out, and having a safe person to confide in can mean the world.

4. Live your lives with us.

What do you like to do? We probably like to do that, too. How do you live your life? We do the same things. These are opportunities to connect, to spend time together and to offer the company of a friend. Sure, we might regretfully decline an invitation, but that doesn’t mean you shouldn’t invite us the next time. Or the time after that. Even small things are worth doing together. A movie night on a couch can be just as fun and fulfilling as a movie night at the theater — maybe more so. Spending time in the kitchen laughing and talking is absolutely invaluable. Live your lives with us and include us even if you aren’t sure what we’ll say yes to. It will mean so much that you have included us.

Perhaps it takes a little more effort to be friends with someone dealing with a health issue. Or maybe once you begin, you find it’s easier than you thought. There really isn’t a secret formula except to just be a friend. We’ll do the same for you. When all else fails, let’s talk. Let’s plan. Ask us how to help, and I bet any of us would be happy to share our thoughts and ideas. Friends are jewels in life who are to be treasured, especially in times of trouble. So let’s be friends!

Follow this journey on Lupus Rhythms.

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


It feels so hard… at first. It feels like the purest definition of overwhelming because it is overwhelming: the beginning of a life lived without what may feel like one of the foundational foods of your family’s diet.

Maybe your child has just been diagnosed with a food allergy. Maybe it’s celiac disease, lactose intolerance or something rarer and harder to explain. Whether it’s a lifelong restriction or a temporary one, the thought of reading labels, re-thinking your family’s mealtimes and being vigilant about whatever your child puts in her mouth seems like a lot to manage right now.

The first thing you might want to do is start searching for replacements for what your child is not allowed to eat. You may want to begin with the one-word suffix “-free.” Gluten-free, dairy-free, egg-free, nut-free – that “-free” word will initially pepper every corner of your consciousness as it plasters itself across the labels of the foods in your pantry and refrigerator. However, before you look for those items, I suggest a different approach:

First, look for the things in your existing diet that already work.

When my already-vegetarian daughter was asked to follow an elimination diet that completely removed dairy, eggs, soy, nuts and wheat from her life, it seemed there was nothing left. However, when we began to look at our average week, there were several meals that worked already. Beans and rice were fine, for example. So was our favorite chickpea soup. Every fruit, every vegetable. We began to marvel out loud at how many things could be made from potatoes.

When I realized there was a place to start, I took out a notebook and opened my cupboards. No matter the item, if it was something she could eat on this diet, I wrote it down: canned mushrooms, lentils, all our spices, artichoke hearts, quinoa, five kinds of rice, Jello mix, sugars, pickles, on and on. I listed every single “yes” in my pantry, and then I moved onto my refrigerator, where I found every vegetable and fruit, salsa and hummus, jam.

From there, I moved onto the meals we could recreate with only minor tweaks. Pasta with butter and cheese was recreated with gluten-free pasta, olive oil and fresh herbs. Many of our favorite morning cereals could stay once we found a nondairy milk we liked. With a quality thermos for her lunchbox, every dinner I’d discovered already worked could become the next day’s lunch

By the time I was done, I had three pages of “yes” items in my notebook. I sat on the floor of my kitchen with a stack of sticky notes and every cookbook I owned. I labeled promising recipes – yellow stickies for the ones I could make without a trip to the store and white stickies for the ones I could make once I’d purchased some substitute specialty items.

Then, finally, I sat down at my computer and began searching for substitutions. I began with the things I needed to complete the recipes we already liked, searching for the best gluten-free pasta, the most effective egg replacers, something that would approximate soy sauce. I joined some discussion groups and asked questions. I started a folder of “Elimination Diet” bookmarks in my web browser.

Within three days, I had a game plan: a list of meals to try, a cabinet full of new experimental items, a mindset shift that made an enormous difference for our family.

In the end, these diets are still hard. They still require vigilance and planning, and as a parent, you still need to know – and memorize every variation of – the foods on the “no” list. However, starting from the perspective of what does work makes an enormous difference.

Hang in there, parents. You can do it.

lunch

The Mighty is asking the following: Write a letter to the parents of a child with your disability, disease or illness. What do you wish they knew or better understood? What words of advice would you offer based on your own experiences? 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.


These parents are trying to send Lego a message the company can’t ignore.

Toy Like Me is a parent-run social media campaign calling on the toy industry to produce toys with disabilities. The group, formed in April, started a Change.org petition asking Lego to create a set that featured figures in wheelchairs in a setting other than the hospital. The petition got nearly 19,000 signatures, but the organization says their request was ignored. Now, with the holidays approaching, they’re trying again.

Toy Like Me has submitted to the Lego Ideas platform, a place where people can upload and vote for new Lego design ideas, a set of holiday-themed figures in wheelchairs. The figures come with accessories like Santa beards, wands and white canes. It’s called “Christmas Wands ‘n’ Wheels.”

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Courtesy of Toy Like Me

The organizers are urging people to visit the ideas platform and vote to make the toy set a reality. According to the Lego website, if a project receives 10,000 supporters, it automatically qualifies for a project review by a board of set designers and marketing representatives.

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Courtesy of Toy Like Me

“For a child with an impairment it would be hugely affirming to be reflected by a brand like Lego,” Toy Like Me co-founder Rebecca Atkinson said in a press release. “It says that the brand is behind them, believes in them and that they are part of the mainstream. For children without a disability, seeing a brand like Lego celebrate human difference helps to create a more positive attitude when they meet someone with an impairment in real life.”

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Courtesy of Toy Like Me

Toy Like Me says Lego has yet to respond to the campaign’s multiple challenges on TV, radio, email and social media.

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Courtesy of Toy Like Me

In July, Lego released a Duplo Community People Set, a collection intended to educate young children about a variety of different people and occupations, featuring a person with a disability. The figure was an elderly man in a wheelchair, which Toy Like Me says furthers misunderstanding about disability as well as the stereotype that it’s something that only affects the elderly.

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Courtesy of Toy Like Me

“Lego has huge cultural sway,” Atkinson said, “and the power to really change perceptions. Children look up to global brands like Lego and learn through them. But if these brands don’t include positive disability representation, then what are they teaching children? That exclusion is OK in real life?”

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Courtesy of Toy Like Me

The organization hopes Lego will soon be the latest to join the ranks of Playmobil, Orchard Toys, Lottie and Makie dolls, who have already answered the campaign call for positive disability representation in toys. Playmobil is now working to produce a line of characters that positively represent disability, to be for released in 2016/17.

Go here to vote for “Christmas Wands ‘n’ Wheels” on Lego’s idea platform.

Real People. Real Stories.

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