“Given the choice between the experience of pain and nothing, I would choose pain.” — William Faulkner

You never truly experience life and your true potential for living until you experience life’s real adventures. These are the moments that in some ways define you and in other ways, stretch you beyond unimaginable limits. I wouldn’t for a moment suggest that I’ve overcome unthinkable odds — just watch the recent news and see real people dealing with dire situations. But in the past six months, I’ve had to face a challenge and it’s given me the opportunity to feel that pain and immerse myself in some important life lessons.

My parents have Alzheimer’s disease. Some say it’s tougher that they both have it, but I see the positive side of the situation. They have each other, and they depend on that more than anything else. They also live in this lovely parallel universe from time to time, where they have the most interesting discussions that only the two of them can understand. And understand each other they do. I’ve often stood on the sidelines, amazed at what I’m hearing but not invited to participate in the conversation. But they have each other and their delightful discourse. Lesson number one.

As I’ve waded through these last few months, educating myself, steeling myself for emergencies and trying to keep an even keel, I began to realize I’ve arrived at this moment in my life well equipped to handle the many extraordinary challenges that exist with aging parents and dementia. For 11 years, I’ve been a parent of a child with a disability. He has mobility issues, speech issues and a mild intellectual delay. Initially, I thought of these two family dynamics as separate entities. Yet again and again, I’ve found the tools I’ve needed to care for my parents from the toolbox of my son, Graydon’s life.

Communication is key with Alzheimer’s patients — eye contact, calm, slow speech, simple topics. Limit distractions, use reminders and cues, stick to concrete rather than abstract ideas. All strategies I have used and some I continue to use with my son. Foster their independence as much as possible. Encourage and reassure them they’re doing well and are loved. Keep their minds engaged and their bodies active. This has been a constant in my son’s life and the one thing that’s helped him progress so well in his daily routine. For his grandparents, it’s perhaps their biggest challenge but one worth pursuing every day.

The most common thread through this journey has been the ever-present need to protect their dignity and respect them, both my parents and my son. Their minds and bodies have challenged them, but they are intelligent, funny, interesting people. Through the tougher moments, I’ve always focussed on the individual, and they never fail to amaze me with their insight and their collective experience. As with my son, just when I feel the overwhelming need to care for them, emotionally and physically, they turn around and enlighten me with their words and actions. Lesson number two.

I think life, in all its complicity, is really just one big classroom. We never stop learning — through our parents, through our children. As arduous as our experiences might seem, they’re what nurture our mind and body. I don’t think I would trade my lot in life for anything. Given the choice, I would still agree with Mr. Faulkner.

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This post originally appeared on Alzheimer Society Canada.

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Dear NICU nurses who were there when our boy was born,

It’s been 7 years, so this thank you has been a long time coming. The early days left little to be thankful for; our assumption of a healthy second baby boy was abruptly replaced with shock, fear and anger. A sterile stay in the NICU is probably not how most families expect to start their journey with a new baby, so I’m sure you’re used to the flux of emotions that come from our end of things. Looking back now though, I’m able to truly grasp the gratitude I hold in my heart.

Thank you for being there for my son. While my hands were shaky, trembling with fear, your warm and steady touch reassured him when I could not. You see, I was too scared. It sounds crazy, too scared to touch my own son, but with wires and leads and tubes attached to him in various places, I was terrified that I’d do him more harm than good if I stroked his belly wrong or made him wiggle too much.

Thank you for your tenderness. You saw that we were scared. Scrubbing your hands and arms up to your elbows for a strict three minutes might be commonplace to you, but doing so before being allowed in to see our baby was definitely new to us. The first time around, we had the freedom to scoop up our infant as he slept within arms reach. We heard him breath all night long without buzzing machines and dinging bells. We felt like parents, not like visitors. When we stood outside the NICU doors with tear stained cheeks and bleary eyes, you stopped what you were doing to welcome us in. When just about everyone else met us with frowns and uncertain emotion, you didn’t. Even though I couldn’t see behind your protective mask, I could tell from your eyes that you were smiling. You walked us to our son’s isolette, decorated with a big construction paper heart with his name and reminded us that this home of his was temporary. You gave us hope when we had none.

Thank you for your respect. You spoke to us in direct terms that we could mostly understand. And if by chance we didn’t, you never made us feel silly for asking questions. When I was too nervous to give my own son his first bath, you walked me through it step by step. When I voiced my concerns, you listened. Even when we sometimes felt like it, you never treated us like victims. We were Aiden’s Mommy and Daddy, plain and simple. You never made us feel small — and that helped to build our confidence.

Thank you for your patience. Every night we made a list of questions. We made you stand there answering each one while we crossed them off our list. Sometimes, when we couldn’t sleep, we came up at 3 or 4 in the morning to ask them again just so we could spin the answers around in our head and give our minds something to focus on. When I couldn’t hear your responses through my heaving sobs, you gave me a moment to collect myself and simply tended to my child’s needs. If I argued or got angry or demanded something of you, you understood it as raw emotions and didn’t dish it back to me even when I may have deserved it. I promise I wasn’t trying to be rude. I was just scared. Thank you for letting me be scared.

Thank you for your encouragement. I was told many scary things about my son in those first few days. I watched as doctor after doctor came in to shuttle him from test to test. Talk of brain bleeds, organ problems, breathing issues, severe mental delays — I was flooded with so many negatives that my entire existence was shaken to its core. I searched for normal. And even though they said I would not be able to nurse my boy because of the anatomy of his mouth, something inside of me made me want to. When he was no longer intubated, you let me try. You showed me latching tricks and pulled up a rocking chair and shooed visitors when I was getting frustrated. You probably don’t know this, but I successfully nursed Aiden for four months. Had you told me no like everyone else had, I would have missed out on an invaluable lesson on perseverance. Something we have carried on into every aspect of Aiden’s life.

Please let this long overdue thank you letter serve as reminder on those tough days — when you let the fear and misguided emotions from scared and tired parents make you doubt your important role. We certainly didn’t find hope from the doctors with their rushed search for answers, confusing big-words and “prepare for the worst” attitude. Without you, we would not have survived. He would not have survived. We will be forever grateful.

Every year on his birthday, I think of you. And I’m finally getting around to letting you know.

Love,

A NICU mom

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This post originally appeared on More Skees Please.

For all of February, 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. No gesture is too small! 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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It had been a tough couple of days.

I was ready to pack my son, Kirby, up and get the heck out of there.

Kirb had pushed me to the edge of fear and patience, and I was just done.

The scene was Boy Scout Camp Horseshoe, where Kirby and some of his buddies from an all-autism troop, BSA Troop 77 Malvern, Pennsylvania, were attending a few days of summer camp with their dads and alongside their neuro-typical brother Scouts. We weren’t doing the whole week, but we had a half dozen boys with autism sleeping in tents for four days on 1200 acres of wooded hillside encircled by the Octoraro Creek.

Kirby had “eloped” (run away) several times during our visit, and the last time he was missing for two hours. He’s too fast for me or any of the other dads to catch when he runs, and he just wasn’t listening. He’d been good for a long time. I was caught by surprise. I’d put on miles of trotting through woods, down trails and over roads looking for him. In the end of each of these elopements, one of the neuro-typical kids would find him and reunite us. It all worked out, but I was burnt out.

But this has been our experience partnering these two troops — the “typical” guys in Troop 7 look out for their brothers in Troop 77. And they can do it in a way we dads cannot. They have the energy, the speed and the stamina to look after a peer with autism that we dads just don’t have anymore. It makes us dads all feel old and inadequate, but that’s for another blog somewhere that whiny middle-age men read to commiserate. The point is, mixing up the typical and Scouts with autism works just like mixing the kids up in school classrooms does. The kids with autism can model typical behaviors and the typical kids become sensitive and usually it brings out the best in them as big brothers and sisters.

At Camp Horseshoe, every morning a Scoutmaster stands up and shares a “big idea” with the assembled 500 Scouts and adult leaders. No one wanted to do one the last day of the week, and I was “encouraged” to stand up and talk about autism. OK, I’m game.

My message that morning was simple:

  • I explained a bit about autism and how much it was a “boy’s issue” and noted that the Boy Scouts of America is primarily a boy’s organization.
  • I explained how proud and lucky we were to have the guys in Troop 7 to be the big brothers of our boys in Troop 77 and how we were only able to take the boys with autism  swimming in the ocean or camping in the woods because of the help and watchful eyes of the boys in Troop 7.
  • I explained that friendship and support were important to kids with autism, even though they were different and seemed less social.
  • And in the end, I pointed out that being a good friend to the Scouts with autism ties into the Scout Law which goes like this: “A Scout is trustworthy, loyal, helpful, friendly, courteous, kind, obedient, cheerful, thrifty, brave, clean and reverent.”

It was a short speech. It didn’t last much more than five minutes including some breaks for clapping and getting the guys of the two troops to stand up to be seen.

Over the next 48 hours, I learned that this five minutes profoundly changed the nature of 500 kids. A proverbial pebble in the pond.

The first thing that happened was that the boys of Troop 7 were visibly proud that they’d been called out for being such great big brothers to the guys in 77.

And then, as the boys of Troop 77 maneuvered around camp that day, they were no longer invisible. Scouts of all stripes stopped to say hello and to shake a hand. The boys started to hold their heads higher.

That afternoon was the camp wide “Paul Bunyan Contest” where all of the troops in camp compete in stuff like climbing, sawing huge logs, making giant pancakes over a campfire and tug-of-war. Magically through the whole event, boys and troops created positive experiences for the Scouts with autism. No one told anyone to do this; they just became aware and did compassionate acts of kindness. At the end, a giant demonstration tug-of-war was staged and somehow the rag tag band of just five Scouts with autism bested the top tug-of-war troop.

This was the final day at camp and parents and siblings and relatives were everywhere. They’d come to witness the Paul Bunyan games and also the final troop marching on the parade grounds that evening. The troop marching each evening at Horseshoe is a camp tradition that’s survived since the first year in 1928. It’s competitive, and there’s a trophy awarded each day of camp for the troop with the best form.

Our brothers in Troop 7 were in a heated tie with their arch rivals of BSA Troop 14 from West Chester, Pennsylvania, on this final day. The tie would be decided tonight in front of all the parents, grandparents, brother, sisters. All week the boys with autism had watched the marching but had not wanted to participate, being content on the sidelines. Possibly it was the changed attitudes and behaviors all day at camp or possibly it was a whim, but the boys with autism announced to us dads that tonight they were going to march. Oh boy, here we go…

As a part of the evening tradition, the troops “call out” details about their troop’s disposition to the adult leaders across the field. How would we get that done? Our guys seldom said anything in more than a whisper if at all. And marching in formation? Come on.

As we dads were ruminating and musing out loud in camp about how to get Troop 77 marching that night, the boys of Troop 7 overheard us. They decided they could help. One of their Senior Patrol Leaders — the same guy that “calls cadence” for their march and who would be crucial to their besting their rivals in Troop 14 — would stand with the boys with autism during “call out” and help them before ducking out and sprinting back to his own duties with Troop 7.

OK, well, here we were — two dads and five Scouts with autism on the parade field and the rest of the Troop 77 dads on the line with the other adult leaders across the field. The boys were a motley looking group who struggled to stand still, but they were there ,and one could tell they were excited and proud.

Call out went just as planned with the Senior Patrol Leader coaching one of our more outspoken boys.

And then the marching started. We were set to go last so we wouldn’t disrupt the competitive troops ahead of us. And when the time came, we marched the route around the parade fields. A disorganized group by any measure, but the boys had their heads held high.

At the halfway point, the applause started. The camp was full of visitors. I wondered if the boys could keep it together with the uproar. They did. Their corners were rounded, and they were out of step, but they were there on the field with everyone else.

As we marched down the line of the adult leaders standing at attention, there was more than one tear shed, and when we passed the head of camp and the boys attempted a disorganized lopsided salute, a lot of us were having trouble seeing through wet eyes.

The boys marched off the field into a mass of new brothers from many troops who all cheered them, patted backs and shook hands.

That’d be a great story right there, but it got better.

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That night, the boys, parent, and visitors of Troop 7 and Troop 77 convened. There was a buzz, the boys of Troop 7 were sure they’d won marching and broken the tie with Troop 14. The annual feast was being enjoyed by scouts and visitors alike. And during that dinner an unusual thing happened.

One of the camp staff came down the walk. He was preceded by a Troop 7 Scout who heralded his forthcoming arrival to me. The boys worry when camp staff come around the sites, it creates a buzz. “Mr Wurts, Alex is coming down and he wants to talk to you.” And as Alex turned up, I noticed Scouts and adult leaders had a wary eye on the proceedings. Apparently so did Alex; he asked me to step up the path to talk in private.

What Alex told me blew me away.

He said the boys of Troop 7 had not won marching that night. This surprised me, as marching results are kept as secret as winners of The Oscars. I’m sure I looked perplexed. I’m new to Scouting, but I knew this was unprecedented. “So why are you telling me this?” I asked.

Alex then explained: Troop 7’s arch rivals, Troop 14, had won marching that night. They were the top of the heap for the week. But the “arch rival” boys of Troop 14 had come to the camp leadership and asked to be allowed to forfeit their win, leaving the rival tie behind. They said they’d like to present the marching award to the boys of Troop 77 for marching as best they could. Alex understood that kids with autism often don’t do well with surprises, and he wanted to tell me camp leadership had approved this unprecedented request and this would go down at breakfast the next morning. Wow. OK. Well then…

As I walked back into camp, all eyes were on me and Scoutmaster Rapp gave me a “come hither” look so I went over to chat with him. He asked about what Alex had wanted, and I told him in confidence. With a nod and a smile, he suggested that I also bring the two Senior Patrol Leaders of Troop 7 into the confidence. I spoke to them together and while they were visibly sad about losing, they were also visibly happy for their brothers in Troop 77.

And that’d be a great story right there, but it gets better so I’ll tell you some more…

The next morning at breakfast in the dining hall, the usual last breakfast excitement and chaos was unfolding. Troop 7 and their arch rivals from Troop 14 were chanting at each other with the typical valor of arch rivals. It was serious stuff suitable for a longstanding rivalry.

At awards time, the marching trophy award was to be presented. All was quiet. Troop 14 was called as the marching winners, and they came up to the podium with the trophy as usual. But then they stepped to the microphone and forfeited their win and called up the boys of Troop 77. They presented the trophy already embellished with a #77 to record the win.

The boys of 77 were truly excited, and they hoisted the trophy like they’d won the Super Bowl or the Stanley Cup. Everyone in the house was on their feet applauding; it was deafening. Many of our guys were covering their ears and smiling. Many adults were teared up again.

When breakfast was adjourned, the boys of Troop 7 were out the door fast. Their Senior Patrol Leaders formed them up quickly into patrol lines. When their arch rivals of Troop 14 came through those doors, they shook every hand and shared kind words. Arch rivals had become brothers.

And that’s how you create 500 autism-friendly teenagers with a 10-minute speech.

This post originally appeared on Autism Village.

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My four tiny boys and I had just arrived at McDonald’s. While waiting for our food, my then 4-year-old noticed two colorfully dressed, dark skinned men sitting at a nearby table. They were enjoying a conversation in a language we couldn’t understand, while sipping their Cokes and munching their French fries.

My son openly stared and smiled. As our family headed toward the playroom with drinks in hand, he peered up at me and spoke with wonder. “Look at those guys, Mommy. They are so black!” They were, and so I comfortably agreed. I was beaming with pride because my son had spent the first four years of his life stimming and not talking. His words were new, and my heart still danced when I heard them.

Moments later I was confronted by an unhappy black woman. “I heard what you said to your son,” she informed me, a hand on her hip and disapproval in her stance. After a moment of confusion, I understood her concern. She went on. “They are clearly visiting our country and should not be exposed to those ignorant comments.”

I wondered if she’d even noticed my colorful brood. My two oldest boys have dark brown skin, the 4-year-old is white like me and my youngest is a coffee and cream color (his dad, my husband, is quite black).

In attempting to tell this woman my reason for not reprimanding my son for his politically incorrect comment, I was given an opportunity to voice an opinion I’d not yet clearly formed.

Those two men were black. My 4-year-old had not lied. And he hadn’t judged them based on their skin color or fascinating and beautiful outfits. Rather, he’d been interested and impassioned to voice his excitement. If I’d asked him to be quiet or worse, not observe and engage with the world around him at all, I would have been in danger of frightening and confusing his natural curiosity, his thrill in enjoying the world. My adorable 4-year-old, who was slow to learn language to begin with, would have heard me bash his newly formed words and his desire to share them. Also, shushing him would be suggesting that maybe there is something wrong with their dark skin.

The woman didn’t exactly agree with me, but she also didn’t argue. She smiled at my boys and admitted that she wanted to think about what I’d said.

The men visiting our country are not my responsibility. The diners at the restaurant and their opinions on how my kids should behave are not my responsibility. Teaching my children to engage in the world and discover their passions is. It’s a job I don’t always do well, but I try to do it authentically.

If I could find that woman today, I would thank her with all my heart. By being willing to voice her concern, she challenged me to discover my own. And as is so often the case, through parenting, I came to understand what is — to me — an important truth.

Understanding and accepting our responsibilities — not fearing a truth for the difficulties it may bring or what others may perceive it to mean — and being willing to speak out when you feel others may benefit from what you have to say (as that woman did on that day) are what it takes to be an active parent. My mom taught me that.

It’s also a successful recipe for being a passionate and engaged citizen. For my boys and the world they will inherit, I insist on being both.

Follow this journey on Autism Answers By Tsara Shelton.

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In this moment I’m overcome with excitement; you have arrived and anything is possible!

In this moment I’m smothering you in kisses and hugs.

In this moment I’m singing to you; your smile lights up my heart.

In this moment I’m worried. Why aren’t you walking?

In this moment I’m grateful. The tests come back and say it’s nothing too serious, something called “hypotonia,” low muscle tone. You quickly start physical and occupational therapy

In this moment you’re walking for the first time, you’re just over 2 years old, and I can’t help but cry. This is one of the best moments in my life. I knew deep down the day would come, but to be honest there where times when I had serious doubts

In this moment you are amazing me with how much you know, how much you see.

In this moment I’m confused. I have no idea what is happening. It’s only the second day of kindergarten. Aren’t you just being a typical kid? Don’t they usually wait a few weeks before pulling you aside?

In this moment I’m frantic. Can anyone help? God please help!

In this moment I’m pissed as all hell. Why can’t they help, why can’t they treat you with the respect, patience and understanding you deserve?

In this moment I’m heartbroken. Where are the answers we are so tirelessly trying to find?

In this moment the doctor tell us she thinks “Griffin has Asperger syndrome.” Asperger syndrome, my son has Asperger syndrome.

In this moment I feel judged and insecure. Being told you aren’t doing a good enough job as a parent is not something I ever thought I’d encounter.

In this moment I’m praying the caller ID doesn’t say “Chicago Public Schools,” but it does…

In this moment I’m choosing to just hug my husband and let this challenge bring us closer together. Making this choice is not always easy, but I know it’s worth it.

In this moment I realize our family is anything but typical, and things like making friends and going to school are not going to be done in a traditional way.

In this moment I need to mourn things not looking the way I thought they should, even though I know we are doing what is best for you.

In this moment I am thankful you can express yourself in your own unique, brilliant way.

In this moment I’m feeling tired and frustrated that you need me to repeat and repeat things a certain way. I feel guilty for feeling this way because I know it helps you and is part of who you are.

In this moment I’m smiling, hearing you share your passions and vast knowledge on topics ranging from video games to classical music, despite hearing about it for the millionth time and not always understanding just what it is you’re telling me.

In this moment I’m in awe watching you talk to people you just met. Seeing you ask a parent about their baby, making that mother or father feel so special, noticing when another child falls down and going over to them to see if they’re OK.

In this moment I feel so lucky that at the age of 11 you still want to hold my hand even after I’ve told you it’s OK to let go. You look at me with your big brown eyes and say, “But Mom, I love you, why wouldn’t I want to hold your hand?”

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In this moment I’m believing, despite what I’m currently seeing, that your future is filled with lasting, loving, supportive friendships, amazing opportunities and experiences

In this moment I’m hearing you meltdown. The banging, screaming and cursing breaks my heart. I take a deep breath, and I hold you

In this moment I feel a pain that I pray I will never feel again. It drowns me in a coat of heavy despair.

In this moment I blame myself. I should have prepared you better. I could have said it this way… I should have remembered to bring this or that.

In this moment I’m trying to trust that I’m doing enough for you. It’s one of the hardest things to do.

In this moment I try to remember that even though you’re 11, sometimes the only way you can handle what is happening is to do what a 4-year-old might do, and that is to scream.

In this moment I will try — try to trust that whatever we need we will receive in the most perfect timing.

In this moment I am listening to you, really listening.

In this moment I know you are doing and will do amazing things.

In this moment I’m so grateful for it all — yes all of it — because I know every moment is a gift. A gift I sometimes would like to return, but one I know is leading to the next great moment.

In this moment I’m letting go of the fear, guilt, blame and loneliness.

In this moment I’m thankful for every single person who has taken the time to know you, ask about you, encourage us as a family and see the beauty of who you are.

In this moment I know you are exactly who you are supposed to be; I am exactly who I’m supposed to be, and that is enough.

In this moment I’m thanking God for trusting me and your dad with you. You, a brilliant beam of light sent from above to change me and anyone who is lucky enough to ever know and love you.

In this moment I love you more than the last.

This post originally appeared on What Will This Day Bring?

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There had just been a snowstorm, and my husband’s business trip was delayed. I was happy to keep him home a bit longer. Maybe I was feeling romantic a couple days after Valentine’s Day or maybe I just wanted him to shovel the snow. I went into the bathroom for a shower. I heard the house phone ring but didn’t think anything of it. I walked out of the bathroom, saw my husband looking pale, sitting silently in the living room. I was instantly nervous, and he told me that his brother, only 32, died. My mind went blank.

My brother-in-law was a free spirit, a surfer who traveled the world following the waves. He was a lifeguard who saved many people’s lives. He loved children and taught them about the ocean. To celebrate his life, hundreds of people gathered on the beach in February and many paddled out into the frigid Northeast water to pay tribute. This was the first event that February that made us take a hard look at what we were doing with our lives.

A few weeks later, I went to China without my husband to see my family. One morning, I was out with my sister, and I suddenly began to violently vomit. I fell over. My sister rushed me to the hospital, where I heard the doctor saying, “blood pressure extremely low…” I’d never felt that bad in my life and thought, “This might be it.” The doctor later said I had severe food poisoning, and I might have died had I not made it there so quickly.

In the hospital bed, I started to wonder if I was making the most of my life. Sure, I had a good education and career. I was on a great path by most people’s standards. I was learning that life is full of resilience but can also be fragile. Was I really making the impact I wanted to make on this world?

Heck no!

I decided at that moment that I want to live my life my way. I want to do things I’m truly passionate about and make a difference. When I returned to the U.S., I got together with my husband, family and friends. Events in our own lives led us towards a common interest — making the world a happier place for kids, especially kids who really need it. We had some ideas about making improvements to kids’ lives in the medical space. After talking to different families, doctors, nurses and therapists, SuperHealos was born.

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My husband and I left our stable jobs to pursue the SuperHealos mission. We’re just starting out but are making great progress. SuperHealos is dedicated to helping kids face life’s toughest challenges. We’re starting this journey by creating stories and characters to whom these kids can relate. For example in our first coloring storybook, “SuperHealos Adventures in the Hospital,” the kids are introduced to the SuperHealos characters and learn what they’ll encounter during their hospital stays. We’re introducing products, like our SuperHealos cape, that play an important role in the story. Kids can feel like SuperHealos with these products and continue to be empowered after reading the book. Our other big focus right now is redesigning the traditional hospital gown to make it more comfortable and exciting for kids to wear. It’ll be a fun part of the SuperHealos ecosystem. You can isit our website and Kickstarter for more info and to support the cause.

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