So last week, Romi and I went to grab some stuff — cough-cough, five boxes of frozen pizza with spicy olive oil, cough — at Trader Joe’s.

The Portland store — besides having a microscopic parking lot that brings on the anxiety of musical chairs from my preschool days — is flanked to the left by a loading dock, complete with a gigantic roll off dumpster that you can actually see inside. This delights Roman, and he runs ahead.

Trailing by a few steps, I see him excitedly jumping, finger pinching, then (sh*t!) start talking to a stranger. Lest you forget, the grocery store is where all the most “helpful” strangers gather to pass judgment on your ill-behaved child and on your inferior parenting skills. I steel myself.

Roman’s unwitting victim is a middle-aged woman, caught mid-step, ensnared in Romi’s world of hydraulics, construction vehicles, conveyor belts and trash. Romi touches her arm, talks rapidly about an orange garbage truck, which I know he desperately wants for Christmas, even though he already has two green ones. But she has no context and zero idea what he’s saying.

I see her familiar, scanning head turn as she wonders, “Is this child possibly here alone?” A weak smile on my face, I step in, catch her eye and nod, wordlessly reassuring her that I’m here — she can go. Instead of leaving though, she lingers, listening to Roman. My hand on Roman’s shoulder, I quickly say, “Sorry, autism,” feeling like a traitor for slapping a label on him like that. But here again, I’m expecting her to make her escape, because this is where most people reply with a weird “that’s OK” as if it weren’t and lumber off to their more normal lives.

Instead, she looks right at me, or through me, it seems, and asks, “How can I help?” Bewildered, I stare back. “Pardon me?” She slows her speech, kindly repeating, “What can I do now to help him?”

Tears immediately well up in my eyes, and I look down at Roman to hide my emotion. “Honestly,” I say, “I’m not sure. No one has ever asked me that.” Incredulous, she responds, “Really?” Um. Yes. 12 years of yes.

Weightless, my self-consciousness lifted, we form a little protective barrier around Roman. Both standing there, me with my arm around my little guy, listening to his scripts and animated dumpster speech. When he starts to slow down, I smile and say, “Hey, Romi, let’s go get a cart so we can get our shopping done.”

Trance broken, I awkwardly say to the lady, “Well … thank you.” And I hustle Roman away before my tears drop. Because even though this whole episode lasted no more than a minute, Roman is settled. His humanity validated by the undivided attention of a stranger, he’s ready to go get some pizza. Right after mama visits the chocolate aisle.

This post originally appeared on Kid Gigawatt.

The Mighty is asking its readers the following: What’s one secret about you or your loved one’s disability and/or disease that no one talks about? If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio.

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When I was a little girl, my mom and I would get up early most mornings to read the Bible together. I always loved the stories in the Old Testament of battles and heroes and romance. I pictured myself as Esther speaking for her people, Deborah leading the armies into battle or Rahab saving the spies.  In my daydreams I was the biblical version of Wonder Woman, stepping up and saving the day when the men failed to get the job done. These days I’m too tired to play warrior princess. Since my daughter Alyssa got sick, another Old Testament story has resonated with me though.

In Exodus 17, we read a story about a battle the Israelites fought. In this particular battle, the Israelites prevailed as long as Moses held up his hands, but he grew tired as the battle raged. His weary arms started to sink; the enemy grew stronger. Seeing this, Aaron and Hur found a rock for Moses to sit on. Then they did something that changed the course of the battle. They stood beside Moses and held his arms up.

Parenting in general is hard work, but when a child has special needs it can start to feel like an impossible task. There are so many appointments and emergencies and daily trials — it’s enough to make your head spin. Ironically, as the world implodes and we need help the most, many special needs parents find their support systems dwindling. Some people choose to abandon us because our new lives don’t fit their sense of perfect. Some shrink away in fear that our tragedy might wear off on them. I honestly think, though, most stand back because they don’t know what to do. In the face of what seem like insurmountable obstacles, physical challenges and emotional devastation, they simply don’t believe they have anything to offer.

That could not be farther from the truth.

As I reflect back on the past two years, I remember many times when I felt like Moses, alone on a mountain, growing weary of the fight. There were moments though, when people came beside me and helped me bear the load. In small acts of kindness, friends and strangers came along and held our arms up.

It was the town pharmacist who saw us adding yet another medication and took the time to ask if I’m OK.

It was my MMA instructor doing an entire class of just punching the bag because I was too raw for anything more.

It was the time at work when I broke down and every woman in my office stopped what she was doing to hold me while I sobbed.

It was random text messages from people saying they were praying for me.

It was my mom sitting with Alyssa so I could sleep for a few hours after being awake at the hospital for days.

It was our brand new babysitter being willing to keep Alyssa even on bad days so I didn’t have to quit school.

It was the other mothers in a Facebook group who understood the true intensity behind a simple post of “I hate epilepsy” and offered their virtual support from around the globe.

It was the friend who let me take off the mommy hat for a little while and talk about school or clients or some other gossip that helped balance out my brain.

It was the people who gave my boys grace because they understood how hard it is to watch their sister fall apart.

It was the teacher’s aide who gently held Alyssa as she crossed the stage so she could still receive her pre-k awards last year after seizures left her disoriented and unstable.

What I want you to notice is that few of the things I’ve listed are world-changing actions, but they were slivers of light in an otherwise dark time. They cost their givers little but meant the world to me. There was no special skill or expertise required, only the willingness to stay when our life was anything but pretty and we were too depleted to give anything in return.

The truth is that you usually don’t have to do anything extravagant to support the special needs parents in your world. I don’t need you to fight my battles. I don’t need you to have all the answers or the perfect plan. I just need you to stand beside me sometimes and hold my arms up.


This post originally appeared on Mom with an Asterisk.

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My baby. It took me a while to whisper those words to the tiny, blood-red thing quivering within a nest of rolled-up cloth nappies. His hospital tags bore my name, but how could I have possibly earned the right to call myself Mom when the only thing I could do for my son each day was to change his nappy through the portholes of his incubator?

I was a helpless spectator, watching as strangers yanked the invisible strings, which I prayed would pull my baby one step closer to home. And every night I left my son alone in the hospital felt like an insult to the very definition of motherhood.

When you give birth to a micropremmie, every trace of the new parent journey you might otherwise expect is stripped away. Those first layers that help establish our relationship with our baby and shape our identify as a mother don’t exist in the NICU.

Or at least, not for a while.

So instead, tucked away in the corner of Ward 9, away from the joyful cacophony of the Special Care Unit babies, I learned about naked parenting.

premature babies the mighty

It took four and a half months, but slowly … achingly slowly … the privileges of my parenting experience were expanded. And somewhere along the way, I became a mother.

But when did it happen? Could it have been that first, incredible time I held Etienne skin-to-skin; when I felt the tiny weight of him relax into my chest, when I smelled him and kissed his downy head 10 days after he was born?

Or did I become a mother several weeks later, when I fed Etienne a fingernail’s worth of milk through his gastric tube, the first time I was able to sustain and nourish him?

Was I a mother after I’d bathed him, or clothed him or picked him up when he cried? Or did it only happen once I’d strapped him into the car seat to go home?

Today, my parental identity has evolved into complex layers of experiences, emotions, insecurities and unanswered questions. But I confidently call myself a mother. So the only way I can answer that question is to strip my identity back again. To find the common connection between the me of today and that scared woman in the NICU, hesitant to call herself Mom.

So let’s take away the home-cooked meals and the carefully chosen outfits, remove playtime and the rituals of a baby routine; strip away the kisses, and the hugs, and the guilt, and the worry and the burden of “not good enough.” And what will stand before you, the essence of this naked mother, is just one remaining layer.

It existed even before I saw my son, before I touched him, bathed or fed him. Even before he drew his first breath.

I’m guessing this last layer is the same in all mothers.  

And that’s a fiercely protective, unwavering and unconditional love for our children.

So if you’re questioning your parental identity because you’re separated from your child, or because they’re in the NICU (or worse), or just because you’re another mom who feels like you’ll never live up to the impossible expectations of others … strip it back.

Take it back to the naked essence of motherhood, which is not about comforting or nourishing, or protecting or teaching. They’re just consequences of that final layer. 

I want to say this to the woman I was back then and to any other woman who ever doubted that title of Mom: At the very moment when our children existed, and we loved them, we earned the right to call ourselves a mother.

Then and forever more.

And once we accept that love is the foundation of motherhood, and every action or decision we subsequently make regarding our children is just an outcome of that final layer, perhaps then we’ll stop questioning and second-guessing and start loving ourselves a little more, too.

carmen gould naked parenting the mighty

This post originally appeared on 558 Grams.

The Mighty is asking its readers the following: What’s one secret about you or your loved one’s disability and/or disease that no one talks about? If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio.

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Tawny Willoughby is using her mistakes to teach the world about skin cancer prevention.

The 27-year-old mom has had basal cell carcinoma five times and squamous cell carcinoma once, according to her Facebook post below. On April 25, she decided to share the gruesome side to skin cancer treatment by uploading the graphic selfie below to Facebook.

If anyone needs a little motivation to not lay in the tanning bed and sun here ya go! This is what skin cancer treatment...

Posted by Tawny Willoughby on Saturday, April 25, 2015

The post’s original message read:

If anyone needs a little motivation to not lay in the tanning bed and sun here ya go! This is what skin cancer treatment can look like. Wear sunscreen and get a spray tan. You only get one skin and you should take care of it. Learn from other people’s mistakes. Don’t let tanning prevent you from seeing your children grow up. That’s my biggest fear now that I have a two year old little boy of my own.

After her post garnered attention, Willoughby added information about her previous tanning routine:

To answer a few questions and comments I’ve seen, I did the bulk of my tanning in high school. I probably laid an average of 4-5 times a week (I laid frequently because my tan faded very fast). I never laid in the tanning bed and in the sun in the same day. I never laid in the tanning bed twice in one day. I had my first skin cancer diagnosis at 21. Now, at 27, I’ve had basal cell carcinoma 5 times and squamous cell carcinoma once (excluding my face). I go to the dermatologist every 6-12 months and usually have a skin cancer removed at each checkup. I’m very thankful to not have had melanoma!

She also offered some education:

Skin cancer is not always moles, only one of mine has been a mole. Get any suspicious, new and growing spot checked out. Anything that doesn’t heal, possibly bleeds on and off and crusts. The sooner you find it the less likely it will leave a disfiguring scar or grow deep enough to metastasize. Melanoma kills, non melanoma disfigures (and can also kill). Don’t be a statistic! This treatment was done using a cream called Aldara (imiquimod). I’ve also had the following treatments: Curettage and Electrodessication, Cryosurgery (freezing with liquid nitrogen), Surgical Excision and Photodynamic Therapy (PDT).

Willoughby wrote on Facebook that in just two weeks, her photo was shared more than 5,000 times. As of May 12, though, that number had surpassed 50,000.

I’ve lost count of how many people shared it now and told me I’ve helped them,” Willoughby told CNN. “It’s really cool to hear people say they won’t tan anymore. I’ve had mothers thank me after sharing my pictures with their daughters. People in my hometown said they are selling their tanning beds.”

h/t BuzzFeed

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Yes to this.

On Friday, May 8, the U.S. Postal Service released a new stamp celebrating the 2015 Special Olympics World Games, which will be held in Los Angeles from July 25 – Aug. 2. The Special Olympics Forever stamp is now available nationwide.

Screen Shot 2015-05-12 at 1.11.31 PM

More than 7,000 athletes from 177 countries will compete in 25 Olympic-type sports at this year’s games, according to Special Olympics’ website.

“The Postal Service is pleased to honor Special Olympics, an organization that — for nearly five decades — has changed the world by creating opportunities for children and adults with intellectual disabilities,” USPS Pacific Area Vice President Dean Granholm said in a press release. “In doing so, we honor the important work of Special Olympics, which uses sports as the catalyst for societal change in the areas of health, education, and in creating communities of acceptance and inclusion for people with intellectual disabilities everywhere. Using these stamps on your cards, letters and packages is a great way to show your support for these athletes.”

For more information on Special Olympics World Games, head here.

You might also like this Mighty story: 36 People Explain Why Special Olympics Is So Important

h/t Disability Scoop

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