Launch Mission Blog

The Launch Mission did exactly that. There was built up anticipation, and then:

Three,

Two,

One,

Blast off!

It catapulted through our expectations, and it just kept soaring. While we knew that the Patches Program was something our Squad wanted, the creativity and positivity that has been pouring out from this Mission has been awe-inspiring.

We had over 2,339 superheroes unlock their mission by the end of the very first day, and we have had over 4,000 in total! 

For those of you who may not know, we started the Patches Program at the beginning of January. Through the Patches Program, each month our Squad can complete Missions to unlock their superpowers and earn patches for their capes! The cape is just the beginning of the Journey, and the Patches Program allows our Squad members to grow and stay united – across the whole world!

This Launch Mission is the very first one, and it lays the foundation for the rest of our Squad’s Missions. Their task was to make their own Toolbox, which will be their place to put the special things they acquire throughout their TinySuperheroes Journey. So, if they are ever in need of a reminder of what makes them Extraordinary, or how many superpowers they are capable of, (like strength, courage, love) they know exactly where to look!

And these toolboxes – some immense creativity, thought, and time was put into them!

 

As I was scrolling through all of the Mission Submissions, I was completely overwhelmed with happiness. (And, when I feel any emotion strongly – whether it is anger, sadness, or in this case pure happiness – I start to tear up.)  So, you can imagine the full force of joyful emotion that I felt as I saw hundreds upon hundreds of TinySuperheroes with huge smiles on their faces proudly holding up their toolboxes.

 

While working at TinySuperheroes has brought me to “happiness tears” many times, this case in particular gave me so much hope and excitement. Our Squad goes through countless battles every single day, and these capes bring hope to them, but what many may not realize is how much strength and hope it gives me, indirectly. Just to know that by being part of the TinySuperheroes Crew, that I can bring at least one smile to a kid, especially a superhero, fills my heart. But to see hundreds of these smiles, I felt like my heart was actually going to burst!

To say I am excited for the rest of the Missions to be sent out is an understatement. One of our goals that we have been striving towards is not only to get a cape to every child overcoming disability or illness, but also to fill their cape with patches. By receiving a cape, these kids know that they are super. However, by Unlocking their Superpowers, they remember that they are capable of so much, and that they have a Squad full of people that care, love, and support them throughout their journey. 

 

6 Year Anniversary!

Today is TinySuperheroes’ 6 year anniversary!  It brings up a lot of feelings – mostly those ones that land right in your gut where you can’t really decipher whether you’re anxious in a really good way or a really bad way. (I’m pretty sure it’s the good way, but my stomach isn’t as confident.)

 

On January 15, 2013 I was inspired by a sweet girl named Brenna.  She was born in December of 2011 (just 2 months after my first child) and entered the world facing a tremendous and unexpected battle. She was diagnosed with a very rare and severe skin disorder called Harlequin Ichthyosis. Her mom began writing about their journey to update family and friends. (She has since written an amazing book.)

 

 

In August of 2012 (prior to me learning about Brenna) my only nephew at the time, Eli was celebrating his 2nd birthday. I wanted to make Eli an awesome birthday present.

 

A few years prior my husband (Joe) had given me a sewing machine for Christmas. I was so excited about it, though it collected dust in a closet until Eli’s birthday sparked my desire to be crafty.

 

I decided that what Eli needed was his very own superhero cape. I went to Joann’s and bought some fleece, velcro, and elastic, brought out my sewing machine and started watching Youtube videos to figure out how to wind a bobbin.

 

I nearly lost an eye that day making Eli’s cape. Seriously. Can you imagine that? Not knowing what I was doing, I had purchased velcro with a sticky backing. Turns out, this was NOT a good idea for a sewing machine. The needle broke right in half and ricocheted, hitting me less than an inch from my eye.

I think back on this silly moment often. How something so small would have changed the course of my life…

 

Well, it didn’t hit my eye, but it did change the course of my life.

 

I gave Eli his cape at his birthday party and honestly, he wasn’t even half as excited about it as I was, but I wasn’t discouraged and continued making capes for the little people in my life.

 

 

Something changed when I read Brenna’s story. I was struck by the  way her family faced their journey with joy and gratitude in the midst of real fear that they might lose their daughter.  Brenna was a superhero. It seemed obvious that I needed to make her a cape, so I did.

 

There are so many things that happened between the day I sent Brenna’s cape and today. We have now sent over 20,000 capes to kids overcoming illness or disability. Each and every one of those capes arrives to a story…becomes part of the journey of an Extraordinary child.

 

It is a privilege to be part of TinySuperheroes.

 

It was a privilege to spend years with Super Gabby as she battled severe Epilepsy and it was a privilege to share in her final days on earth – her nurses proudly wearing her cape on Gabby’s last day.

 

It was a privilege to join Super Evie in her kindergarten class to help share her story and teach her class about Spina Bifida – helping to teach them that our differences make us Extraordinary.

 

It was a privilege to walk into Super Jacob’s room and visit with him just hours after he received a femur transplant to remove the cancer in his bones.

 

It was a privilege seeing Ryker bend the knees on his prosthetic legs years before doctors ever believed he would.

 

It was a privilege meeting Super London and watching in amazement at the beauty of her sign language. It left me a puddle when she and her mom created a special sign for my name (a combination of the signs for “R” and “tiny”).

 

It was a privilege to stand in line for hours at Super Runner’s funeral, where hundreds or people rallied to honor him and support his family. His TinySuperheroes cape draped his casket.

 

It was a privilege to help Super Remedy and her mom pack and move out of the Ronald McDonald house where they had lived for over 9 months, hundred of miles away from their home in Alaska. As they said their goodbyes to their new-found family, Remedy gently sang “Grown Ups come back” from Daniel Tiger.

 

It is all a privilege.  These moments are sacred. I do not take them for granted.

 

TinySuperheroes is much more than a cape.  It’s a Squad, a community, a journey…

 

My goal for our TinySuperhero Squad is for every single child who receives a cape to know without a doubt that we see them, that we are on their team and that we believe in them.

 

We start our relationship with their official cape, but I believe it is our consistent presence and encouragement in their life that holds the possibility of instilling true self esteem. Pride that they can take with them for the rest of their life.

 

I hope that 6 years from now, there will be hundreds of thousands of kids who know they aren’t alone – who are part of a Squad that knows what they are capable of and embraces every unique superpower that they bring. I hope they feel and believe they are Extraordinary. I hope, like Super Max here, their cape will be something they cherish as they grow!

 

So here we are in 2019. We’re sending more capes than ever. There is a crew of amazing people around me now who all share my passion for our Squad. It is wonderful to have people by my side.

 

We launched our new Patches program just last week and now every child on our Squad has the opportunity to join us for monthly missions, to unlock their superpowers and earn patches for their capes at no cost to their family. In 7 days, over 1,000 kids created their own TinySuperheroes Toolbox – confirmation that our Squad is ready to dive deeper.

….

 

Personally, I am humbled by all that you have taught me and I am grateful by how you have embraced me, just as I am…ponytail and all.  I cannot thank you enough.

 

We are forging forward today, as we do everyday, to turn our hopes for our Squad into realities. We strive always to learn from and serve our TinySuperheroes in the very best way we can.

 

For every unread email, late reply, missed appointment, cape shipped to the wrong address, or surgery missed… I hope that you know at my deepest core, I love you all.

 

Six years is something I am proud of, but I’m pretty sure the journey is still only beginning.  Thank you for being a part of it and for trusting me along the way.

 

Love,

Robyn Rosenberger

Status Update 1.4.19

Status update.

It’s January 4th already and we have a lot going on.  I figure the BEST way to make all of our TinySuperheroes (and their parents) feel loved and cared for is to keep our lines of communication wide open, but sometimes when you’re a bit buried in the day-to-day even that becomes a challenge.

Tonight I just wanted to give some status updates in hopes of reaching as many of you as we can to keep you on the same page!

Not sure how many of you were around to witness the great cape drought of July 2018. It was rough. Throughout the year more and more and more and more and more families were nominating their kids for capes.  It has been awesome.  I don’t want to say we were unprepared…so I’m going to say we were surprised.

So, we ordered a ton of capes*** (like twice as much as we ever had before)…but they didn’t arrive before we were completely out of capes, leaving hundreds of kids waiting (patiently) for their capes to arrive.

 

***There’s an idea floating around that we hand sew every cape and it is my goal to be transparent with you all whenever possible.  TinySuperheroes started by me sewing capes.  I probably sewed well over 1,000 capes from my kitchen cape (which my family loved) before it became too much to keep up with.  We now have our capes manufactured using our design, our fabric and our love…and we personalize the capes at our HQ in St. Louis. Would we love to hand-sew every cape?  Sure!  But would we have been able to send capes to the 20,000+ kids who have received them? Definitely not!  And since empowering kids is our Mission, this is the direction we have taken.

 

I digress….

In August, 8,000 capes arrived and we were elated. This is probably one of my most favorite photos of behind the scenes of TinySuperheroes because it so clearly represents how far we have come in our journey with TinySuperheroes.

Then December came…never ever ever ever ever ever in a MILLION years would I have guessed we would have sent out 8,000 capes in 4 months, but guess what, we did. It’s incredible really. And I over emphasize this on purpose…we want each and every child who receives a cape from us to feel our arms wrapped around them. (Hoping to accomplish this even more so with our new Patches Program!)

The craziest part about that is that every single one of those 8,000 capes (minus 60 that were given out at a hospital) was sent directly to a child’s home.

Here we are on January 4th. We did everything we could to avoid another drought but here we are.  Are we totally out of capes?  No…our capes come in various sizes and colors so that each TinySuperhero receives a cape that fits them perfectly.  So, we currently do have some available and are sending them out to everyone possible.  But, if a TinySuperhero is looking for a blue or red cape these days, we’re just completely out. And if they need a large pink or purple, we’re out of those, too.

The good news is in October we made another big order…this time we ordered 15,000 capes…and they are in progress, just not yet on their way. You better believe we will be ready for their arrival.

So, if you are one of these parents whose kids are waiting for their capes, I want you to know that I’m so sorry for the delay!  We kindly ask you for your trust and patience.  I have three kids (ages 7, 4 & 1)…trust me, I get it. If they were expecting a cape in the mailbox, this would be devastating…

Which is why I’m thrilled about the timing of our Patches Program which begins on Monday! Everyone is invited to participate, and I sure hope that all the kids who are waiting will be the first to sign up!

Thanks for sticking with us!  We love you all and are SO excited for what is ahead for 2019. Our focus (as we continue welcoming more kids to our Squad) is for be the fuel they need to unlock their superpowers.  This is no small task, but we’re ready to take it on!  We will continue communicating with you to the very best of our ability!

Love,

Robyn

 

Patches are Coming! SOON!

The launch of our new Patches Program is right around the corner!  We are excited to tell you all about it!

 

Our Mission at TinySuperheroes is to empower Extraordinary kids as they overcome illness or disability. We are always striving to welcome more kids to our Squad while also providing fuel to all of them.  Our new Patches Program is our next step towards this.

 

At TinySuperheroes, the cape is just the beginning. We live by this motto within our HQ, but we also have to live it in order to ACTUALLY empower the Extraordinary kids who make up our Squad. If the cape is just the beginning for our TinySuperheroes, then what is next???

 

About 2 years ago I offered a paid monthly Membership where families could receive monthly activities in the mail to complete and earn patches for their capes.

There were a few things about this that were most important to me.

 

  • Kids love receiving mail.
  • Negative voices surround us, and kids. Throw in the exceptional challenge of having special needs and the voices become very loud. Our messages of affirmation need to be louder, which means these kids need to hear from us often and regularly.
  • Authentic pride is developed by achieving goals and overcoming challenges. To build pride in our TinySuperheroes, we have to give them opportunities to succeed.
  • Every child deserves the opportunity to participate.

 

We had over 120 families participating in our Monthly Membership for over a year. It was awesome – I felt it was working! The kids who participated were engaged, excited and proud! But there were way more than 120 kids in our community who deserved this opportunity, and I knew the $10 monthly cost was simply too much, but wasn’t sure of the solution (yet).

Then, we did a survey to 3,000 families in our community…

 

Is your child part of an extracurricular group or activity?

NO 80%

YES 20%

 

Would your child like to be?

NO 20%

YES 80%

 

This is a problem, and I believe TinySuperheroes can be part of the solution. I have a deep desire to fill this void. I long for TinySuperheroes to be a Squad – a community – where every child is welcomed, celebrated, encouraged, supported and empowered.

 

In 2019, we are breaking down the barrier – we’re making our new Patches Program free for everyone. I am so excited…and slightly terrified if I’m honest!  We are using what we learned from our Monthly Membership and making it accessible for everyone.

 

How will this work?  Great question.

 

The Patches Program is designed to help our TinySuperheroes unlock their superpowers.

 

On the first Monday of each month we will release a new activity for our Squad. We call these activities “Missions”.  Each Mission will focus on unlocking a unique superpower like kindness, courage, strength, etc.

 

Upon the release of a new Mission, there are 4 easy steps to take:

  1. Unlock Mission

Once a new Mission is released you will go to TinySuperheroes.com/Patches and simply click the “Unlock Mission” button.  Enter your email address, and you will instantly receive a link to access your secret Mission!

 

  1. Power Up!

This is the phase where you actually DO your Mission! Once you unlock the Mission (described above) we will give you all of the information you need to complete your Mission!  Be as simple or creative as you’d like to complete your Mission! Take photos while you’re working on your Mission so you can report to HQ when you’re done!

 

  1. Report to HQ

Now that your Mission is done, you need to report back to HQ!  (HQ is what we call our Headquarters!) Click the “Report to HQ” button at TinySuperheroes.com/Patches and provide a description or photo of your Mission! Missions are due at the end of each month.

 

  1. Mission Complete

You’re work is complete!  Now, we will ship your patch to wear proudly on your cape!  (The patches can be ironed on by a grown up, no sewing skills necessary!)  We hope you’ll send us a photo to show off your new patch!

 

Our first Mission releases on January 7th (the first Monday of the month).  This is our Launch Mission and we will be building the foundation for our TinySuperheroes’ Journey.

 

We hope you will join us.  The action will all happen at TinySuperheroes.com/Patches  (Remember, you have to patiently wait until January 7th!)

 

Questions?  Leave them in the comments below – your insight will likely help many others (and us) too!

Santa Visits TinySuperheroes HQ

TinySuperheroes HQ is a unique place. Some days it’s very quiet. The lights are dimmed, and it’s just me. But most of the time, it’s bustling with kind-hearted people working really hard to get capes to superheroes from around the world.

There’s one thing that never changes at HQ…it’s always magical. Today, this rings especially true. It is the morning of the Santa Party.

St. Louis’ South City Optimist Club was kind enough to throw a holiday party for TinySuperheroes! People of all ages have filled the room. I am sitting at the arts and crafts table by Super Sawyer and Super Danni. I hear the familiar rumble of the train roar by, but today this train is special. It is dropping off Santa all of the way from the North Pole to visit the incredible kids at HQ! (He took the Polar Express because his reindeer are resting up for Christmas Eve.) I see Super Sawyer’s eyes light up as he feels the rumble of the train, too. I mention how excited I am to see Santa, and how he is probably getting off that train now. And sure enough, Santa comes through the door soon after!

Super Ava ran right up to Santa! Super Ava, if you ever get the pleasure of meeting her, is among the sweetest and most courageous of the Squad. She was the first to sit on Santa’s lap, and she quickly captivated the whole room. In the commotion, Super Ava’s tiny voice began to proudly sing ‘Rudolf the Red-nose Reindeer.’ Santa quickly joined in, and then the song slowly took over the whole room as one by one we all joined in to sing the song. It was like a movie scene, “The best way to spread Christmas cheer is singing loud for all to hear.” Super Ava’s Christmas cheer and the magic that goes with it, like a wave, took over TinySuperheroes HQ.

 

 

 

 

 

 

 

This was the start of something magical, indeed. Everywhere I looked little pieces of magic were happening. There were Squad members soaring around the room.

One Extraordinary kid at TinySuperheroes HQ had yet to receive his cape, though: Super Charlie. When it was Super Charlie’s turn to sit on Santa’s lap, all eyes were on him. The Squad was prepared to add another member and surprise Super Charlie with his blue cape! While a little tentative at first, Super Charlie opened the box. He unwrapped his new cape, and I could see his face change into a big smile as he realized that having a cape meant that he was a superhero.

 

 

 

 

 

 

 

 

 

 

 

 

Later Super Charlie could be found next to Super Maria. Both TinySuperheroes communicate using a special device. Super Maria is usually quite tentative to use her “talker”, especially with someone she doesn’t know…but there the two of them were, learning about each other through their talkers.

While people in the TinySuperheroes community were coming in and out of HQ all morning, Super Carlos and his family were one of the last to arrive, but boy, did they make one of the biggest impacts. Super Frida, one of Super Carlos’ sisters, also joined the Squad today! She was beaming ear to ear with such a beautiful smile the whole time. Immediately, she put her purple cape on and started flying, yes I said flying, around the room.

By now, most of the kids had their fair amount of candy thanks to the many delicious snacks that the Optimist Club provided. Super Rory told Alexa to play music, specifically ‘Kiki’ by Drake. And while at first many of the adults made skeptical disapproving faces at the loud song choice, something sparked inside the kids, and a dance party began to form in middle of TinySuperheroes HQ! Little bodies began to move to the music and laughter consumed the room. Super Liam knew every word. Super Carlos was the star of the show, in the center of the dance floor. I specifically felt incredibly special because Super Carlos wanted ME to dance with HIM! I was truly honored and felt the magic swell in my heart as I joined in the dance party.

As the Santa Party slowly but surely came to an end, it was just me and the quiet in TinySuperheroes HQ again. I glanced up and saw Courage, the TinySuperheroes elf. He had been sitting above the door the whole time keeping a watchful eye on everyone, and I swear he winked at me as I locked up TinySuperheroes HQ. The magic that TinySuperheroes brings to my life is truly incredible, and I am so blessed to be a part of it.

 

Super Vivian

Today, I met Super Vivian for the first time. I didn’t know much about her, but she is the cousin of a woman I admire greatly, so it didn’t take much convincing that we needed her on our Squad.

Super Vivian is 8 years old and going into third grade. She has revealed Extraordinary super powers while navigating childhood with sensory processing disorder and generalized anxiety disorder.  

Today, Super Vivian came to the Shipping Extravaganza event at our headquarters. It was the first time I had met her, and she had yet to receive her cape.

When Tiny Superheroes are nominated for our waiting list, they are given the opportunity to ask their community to support the sponsorship of their cape. The goal is $30 and any money received over $30 goes to sponsoring capes for other kids on our waiting list. (There is no obligation for families to participate in the campaign, but it is what enables us to send thousands of capes each year.)

Super Vivian had already rallied her community to raise $310, enough to sponsor her cape and NINE other Tiny Superheroes from the waiting list!

The incredible thing that surprises me over and over again are how generous our TinySuperheroes are. Often they are just as excited to help other kids as they are about receiving their own cape. It’s phenomenal.

While we were together at our Shipping Extravaganza, we had the awesome opportunity of personalizing her cape together! Then, she presented me with $150 to sponsor five more capes! (On top of the $310 she had already raised!) Super Vivian created her own stress balls and sold them to family and friends to raise this money, and decided she wanted to use it to help empower TinySuperheroes!

Super Vivian’s cape transformed her spirit in a very short time. Just this past Thursday Vivian was at the park with her friends and became very sad and withdrawn when all her friends wanted to spend all of their time on the zipline – something that terrified her. Managing emotions in these social situations can be very hard for Super Vivian.

Shortly after Super Vivian received her cape, her mom sent us this message:

 

“Although her anxiety has come a long way, she still struggles every day. Especially in social situations. She has been hyper-focused on that day at the park with her friends and her anxiety about the zip line. As soon as you put the cape on her she ran over to us and asked if we could go to the zip line today. I know she asked 80 times during lunch and the drive home. She jumped right on.”

 

Watch this short video to see how joining the TinySuperheroes Squad has empowered Super Vivian to embrace her super powers!

 

Stand With Mario

The moment you finish reading this, your life will never be the same. Mario does that to people – he changes them.

“Let’s sell hats and change the world.” – Super Mario

I had the pleasure of meeting Mario over video this week and when his mom told me about the morning that Mario said to her, “Let’s sell hats and change the world”, I knew he was special. Well, I actually knew well before that, but this sealed the deal. I’ll tell you more about how he is changing the world with hats, but first I want to tell you more about him.

Mario was born in 1999 in the back of an ambulance. You read that right – he was born in the back of an ambulance and he had no signs of life when he arrived. He was saved by the paramedic after 7 minutes of resuscitation. When they arrived at the ER, the doctor said he wouldn’t have even tried to revive him. Being born in an ambulance to the hands of a paramedic saved his life. Mario’s faith is strong and from day 1, his life has been a testament of his faith.

Doctors said he would never survive…then they said he would never eat…that he would never talk…that he would never walk.  Well, so far he’s done all but walk – which he’s overcome in abundance. He gets everywhere he wants to be with the massive strength of his arms, as he’d rather travel on his own than in a wheelchair. And as for surviving…eating…talking…well, he’s doing just fine!

Among his long list of things he has overcome are two rare syndromes – Caudal Regression Syndrome and Golden Har Syndrome. He has survived open heart surgery, stomach surgery, intestinal surgery, hernia repair, G-Tube placement and removal.  But at 18 years old (he’ll be 19 next week) he is much more than a survivor. Against all odds and with strength from his faith in God, Mario is thriving.

He finds joy in dancing, specifically to his favorite Taylor Swift song, Shake it Off. He loves cheeseburgers and pizza. He loves living in California but is hesitant about surfing (though he’s done that, too). He spent nearly a whole day in the company of Tim Tebow – who is now a big Mario fan (not surprisingly). He’s one of the friendliest guys I’ve ever met and in our brief time together over video he showered me with heart-felt compliments. He made me feel so special – I imagine he makes a lot of people feel special.

While I think it takes merely 20 seconds to realize that Mario’s super powers are limitless, peers in his life have not always taken the time to learn this. Instead, he has often been met with bullying – the kind of bullying that hurts you externally, and hurts you internally even more.

One morning, after a hard week at school, Mario decided he’d had enough. He woke up, and told his mom that he was going to put an end to bullying. “Let’s sell hats and change the world!” While his mom admits that at first it seemed like a pretty far-fetched dream, per usual, Mario took action anyway and soon she saw his potential yet again.

“Stand With Mario” is his campaign to end bullying. Mario wants to support kids who have been hurt by peers and he wants to educate kids about acceptance and kindness. He wants to create opportunities for kids to be buddies instead of bullies, and he is doing this with Buddy Benches.

Buddy Benches were inspired by a boy named Christian who wanted to bring something to his elementary school to “eliminate loneliness and foster friendship on the playground.” The idea caught fire and now buddy benches can be found all over the country.

Mario soon began selling T-Shirts, sweatshirts and hats, using the proceeds to place buddy benches at elementary schools. It costs around $500 for Mario to bring a buddy bench at a school and already Mario has raised enough money for 3! His goal is to place 24 buddy benches at 24 elementary schools.

When Mario sees people, he does not see their limitations. When he sees problems, he doesn’t see dead ends. So when Mario reflected on how bullying affected him, he took action to end it for everyone else.

Mario’s mom plays no small role in all of this. She actually is his adoptive mother and clearly lives with a faith in God and belief in her son. In our “meeting” she wanted to make sure that other moms who were dealing with medically fragile children could see the hope that lies in Mario’s life.

“It is so daunting – the doctor’s appointments, therapies…but it is worth it.”

Talking with Mario made me so excited. Of course I am excited for the work he is doing and I am honored to join his journey, but if you think of the thousands of TinySuperheroes on our Squad, and how one day they will all be grown like Mario with ideas of their own…well gosh – our Squad really could change the world!

You can support Mario’s mission and buy his awesome gear or donate a “Hero” hat to an amazing kid by clicking here.

 

TinySuperheroes Delivery!

Last night I accompanied Super Rory and Super Maria on an important TinySuperheroes Mission. You never know when you will be called on for an important Mission, and when you do, bedtime goes out the window and you answer the call!

St. Louis Children’s Hospital is home to Dr. Parks who is known all around the world for performing SDR surgeries. SDR stands for Selective dorsal rhizotomy and is an optional surgery for kids with Spastic Cerebral Palsy. Parents from all over the world make the hard decision to travel to St. Louis for the surgery, followed by weeks of intensive physical therapy. All in all the surgery is a month commitment with many more months of therapy to follow up with when they return home. On average, it seems families need to raise about $150,000 to move ahead with the surgery. It’s a big deal.

Through a series of awesome coincidences, we were informed of a group of kids who were in town for surgery and camping out at the same hotel…of course they needed capes!

Tuesday night Super Rory, Super Maria, her mom and I met at TSHQ to gather our supplies and headed to their hotel!

There isn’t a word to describe the experience of empowering kids with their official cape. It changes your life. Soon I’m going to figure out a way for a videographer to accompany me on deliveries…

There we met Super Ella, Super Ben, Super Emma and Super Jana. They all have spastic cerebral palsy and each had the SDR surgery in May, but these four TinySuperheroes are each so unique that I can’t wait to tell you about them individually.

Super Ella is 5 years old from New Zealand. She actually had her SDR surgery ON her fifth birthday – May 3!!!  Super Ella is a celebrity in her neck of the woods. I could go on and on about this girls incredible journey, but for starters,  she is a world record holder – the first I’ve ever met actually. Super Ella loves fairies and in their efforts to fundraise for SDR, they broke the world record by having 928 fairies in one place! They rallied their community in such an amazing way that men, women, dogs and kids were all dressed like Ella to help get her to St. Louis! There’s so much more to this amazing kid, you should definitely follow them on Facebook at Fairy Steps 4 Ella.

Super Ben is 6 years old and is also from New Zealand. It took about 30 seconds to learn that he was a rockstar. He certainly has the personality for the part, but it was amazing to experience one of his concerts in the lobby of the hotel. He and all of these friends had drum sticks that they found at the Hard Rock Cafe and it was clear we weren’t their first audience! It is Ben’s dream to walk unassisted, and the path to that dream involved getting to St. Louis for SDR surgery. His family made it happen and his resilience and determination will have him on his own two feet, I am sure. He’s also a superstar in New Zealand, so be sure to check his story out here.

Super Emma is 7 years old from Denmark. She has a grace about her that you can feel when you are with her. Super Emma could walk independently before SDR, but they were very hopeful the surgery would help. After surgery, most kids have to work very hard to regain muscle strength before they see improvement. When we found them, Ella, Ben and Emma were having celebratory “walking cookies” because we met her on the day she walked independently again for the first time. What an honor. They will be returning to Denmark this weekend where her dad, twin brother and older sister can’t wait to have her home! Super Emma’s cape had a heart on it, and she told her mom (because I unfortunately did not speak her language) that her super power was knowing how people were feeling and being able to make them feel better. I have no doubt this is true of her.

And finally Super Jana. She and her mom are in town from Jordan and she had her surgery just about a week ago. I am SO happy that they happened to return to the hotel while we were still here, because missing them would have been a big loss for me. The first thing you notice about Jana is her smile. It is BEAMING. I don’t think I’ve ever seen a more radiant smile. Jana is 8 years old. She is a bit shy but her loving nature overpowers it. She held my hand during a photo and half of my heart is still in a puddle in that hotel lobby. Jana just had her surgery about a week ago, so Tuesday was her first day of the intensive therapy. In order to make the trip for her SDR, Super Jana created beautiful artwork to help fundraise. She is an incredible artist. When I saw her pictures, I couldn’t believe how beautiful they were. I am going to do a separate post about her art because I learned so much from her three drawings. You can follow her journey on Facebook at Hope for Jana.

We’re grateful to have been greeted by open arms, and so humbled that our community’s love resonates across the globe.

Super Londyn’s Sign

Photo by Rikki Lauren Photography

There is something unexplainable and special about TinySuperheroes.

It’s hard for me to write about because I’m always nervous that it will come across as if I think I had something to do with this. I have a lot to do with TinySuperheroes…my awesome team would probably panic if I left because I’m quite unorganized actually (big surprise, I know) but I definitely do not want credit for this special part because it is something deeper than anything I could have even imagined.

We had our Open House this past weekend to celebrate National Superhero Day. Hopefully at some point I’ll get around to writing a post about that…

But for this I just want to focus on one special moment (among dozens) that happened that day.

I’m backing up a week to an event we participated in called Shoot for Seamus.  (I seriously need to do a post about that too…see what I mean about being disorganized?)

This event is led by amazing women (many of whom are professional photographers) and the goal is to capture photos for families of NICU babies.

I have the pleasure of giving our teeniest capes to these sweet babies (there were 104 of them that day).

Photo by Meghan Stewart

This was my second year participating and it was fun to meet some new folks who joined this year.  Two of them were named Marquita and Mia.  They were there because they knew what these families were going through and were honored to have an opportunity to give back.

Marquita’s daughter, Londn, and Mia’s son, Gavin, both spent 9 months in the NICU during the same time when they were born 9 years ago. It is obvious that this time formed an unbreakable bond between these two women.

They both have a remarkable spirit about them, and I was fortunate that Marquita was assigned to tag along with me, so while roaming the quiet halls of the NICU we were able to chat. I felt like I had known her forever.

One week later I invited both of them to bring their kids to our Open House! I was a little worried that I was jumping in too fast, but they kept right up and I had the pleasure of meeting Gavin & Londyn on National Superhero Day! We had some other Squad Members here too, so they were able to give Gavin & Londyn their capes and officially welcome them to the Squad. (This was a REALLY special moment though not the focus of this story…)

Super Gavin receiving his cape

When Londyn was born she weighed just over 1 pound. Marquita was repeatedly told that Londyn would never be able to breathe on her own as she relied on a trach and ventilator in the hospital. An amazing testimony of faith, Marquita and her husband never gave up on this possibility and of course Super Londyn has been breathing on her own for most of her life now!

I can’t possibly capture their journey with Londyn in this post, so I just want you to know that I’m leaving out so many important details on how a 1lb baby can turn into a 5-foot-tall, beautiful 9 year old girl.

Super Londyn has significant hearing loss and has a cochlear implant in her left ear. She communicates in many ways, sign language being one of them. Becoming fluent in sign language is on my bucket list so I’m probably annoyingly excited to meet people who speak it.

So, Super Londyn and I were talking and I was showing off my skills (I’ve been spending a lot of time singing to Baby Signing Time)…like how I can sign eat, drink, play, candy, apple…and my current favorite, cracker. Londyn was appropriately laughing with me and will certainly make a fabulous teacher some day.

So there is this very special thing in the Signing Community where people have symbols to represent their name.

—— I am in no way educated or properly familiar with the Signing Community, so I’ll probably have a lot of this wrong – so I’m sincerely apologizing upfront. — —

So you can spell someone’s name with the alphabet, which I think is a very common way to introduce yourself, but there’s also this tradition of sorts where you can receive a symbol – or a special sign that someone creates to represent you!

Super Londyn has a symbol for her name.  You make the “L” with your finger and bounce it over your heart. Marquita and Londyn were teaching me her symbol and decided they wanted to give me one. They made the “R” with both hands and put them in the position that means “Tiny or Small” (like TinySuperheroes…) and they made it my symbol…a special sign to represent me!

I’m unfortunately not a big crier, but if I were, I would have been bawling. In some ways this is a small gesture. Anyone can have a symbol..but it must be given to you by someone in the signing community…which makes it so beautiful.

I’m having trouble finding the words to explain why this moment was so special to me…I think it really embodied so much of what I love about our TinySuperheroes Squad in one moment. Love, Unity, Inclusion…celebrating each other just as we are. Londyn welcomed me into her journey with wide open arms – no hesitation – and I wonder what it would be like if more humans could wrap their arms around strangers like this.

Super Londyn is quite amazing and I’m sure I only know about 2% of her story. The imprint she left on my heart that day was deep. I have found myself doing her symbol just to relive that special time together.

My life is never better than in these moments when I feel real connection, and more often than not it is when I’m with my TinySuperheroes. I only hope that I too can freely embrace people as well as Super Londyn’s family has embraced me.

Super Liam giving Super Londyn her cape! Photo by Rikki Lauren Photography

In honor of Super Luke

In Honor of Super Luke

If I were wise, I would be writing down each and every story that I have the privilege of encountering. They are all different and each one is mind-blowingly amazing in its own unique way.

I’m about to tell you an amazing story about Super Luke Yarrow.

Luke was born on January 21, 2013…surprising everyone by arriving 10 weeks before his due date. He made quite an entrance with an emergency c-section just 2 hours after his worried parents went to the hospital.

Luke’s journey began in the NICU, where he was intubated and put on an oscillator. An ultra sound revealed that he had suffered a brain bleed on both sides of his brain and at 4 weeks old Luke was diagnosed with Congenital Hydrocephalus and had his first surgery to place a VP shunt.

For 2 1/2 months, Super Luke was in the hospital, his mom was staying at a Ronald McDonald House and his dad was at their home working – 1 hour away. This was hard to say the least.

Luke breathed on his own for the first time when he was 2 months old. He had a G-Tube placed so he could eat safely without aspirating, and he went home for the first time on May 4, 2013 – a day his family will never forget!

Super Luke’s life at home was wonderful. He has the most amazingly committed parents who did everything to help Super Luke live a full life. Through in-home therapy Super Luke learned to take liquids and food orally, roll over and began being mobile with the help of amazing adaptive devices.

Luke received his cape and officially joined the TinySuperheroes Squad in January of 2014. When his mom nominated him, here is what she said about him:

Luke is definitely our super hero.  He was born 10 weeks early, and was diagnosed with a severe brain bleed and Hydrocephalus.  Many of his doctors told us not to expect him to make it past 3 weeks.  Well, he turns 1 tomorrow! He has had surgeries for a shunt placement, a shunt revision, and a g-tube, and he has been amazing through it all!  We’re working our way up to full feedings by mouth and every day he gets stronger and stronger and maintains his happy disposition. If you can’t tell, I’m one proud mama! 

Super Luke is an Extraordinary member of our Squad. He completed every single TinySuperheroes Mission that was available to him and was planting seeds of awareness everywhere he went by handing out his official TinySuperheroes Squad Cards. (I hear there is one hanging up in the Kansas City Royals AND Chief’s locker room!

I never had the privilege of meeting Super Luke – something I really regret – but I do feel like I know him and this story that his parents shared with me captures his essence.

Super Luke loved school and school loved him! His family was essential in the plan to create an accessible playground at the elementary school. Super Luke was loved by all there, but had particular fondness from the school’s custodian. One day, Super Luke gave the custodian one of his Squad Cards. To this day, this man carries Luke’s card safely in his wallet – and often showed it to Luke in the hallway.

Love radiated from Super Luke. He was an active member of the Junior Rangers and has visited far more National Parks than I probably ever will – with the patches on his backpack to prove it. He was thriving in pre-K and excited for kindergarten.

In late February, Luke became sick with RSV. Because of his history with breathing problems, Luke was hospitalized but was improving. An awful spiral of events started and Super Luke contracted Influenza and hospital-acquired pneumonia. He was transferred to the Children’s Hospital but his strong body had had enough. Super Luke passed away on March 20th of this year.  No doubt he is soaring above with our other TinySuperhero Angels, and he certainly is surrounded by love, but nothing in the world can ease the pain of this loss.

Within days of Super Luke’s passing, his family reached out to me. I’m not sure they will ever comprehend how much this meant to me. I honestly cannot wrap my head around it. I am so honored that TinySuperheroes was such a strong part of Super Luke’s journey, but without hesitation they have given me far more than we have given them.

His memorial was a superhero celebration! His obituary stated that he was a member of the TinySuperheroes Squad. His parents asked people to contribute to TinySuperheroes in lieu of flowers. It’s beyond incredible – but honestly, it’s not surprising – Super Luke’s impact while he was on earth was immeasurable, there is no doubt his message will continue to reach the world.

His parents, Corey & Joshua drove from Kansas to St. Louis to meet me and deliver the contributions. They are learning this for the first time as they are reading this, but in Luke’s honor, his friends, family and community gave over $3,000 to empower 100 new TinySuperheroes. Luke touched the lives of everyone he met – and he isn’t stopping.  In the boxes of the 100 capes we send out in Luke’s honor, we will be including his Squad card and his story because his Mission is not done. We are honored to help him continue to carry it out. We are so very proud of him.

If you feel inclined, you can help us share Super Luke’s story – it is a story that should be heard. You can use the buttons below to share to your Facebook page, and help us spread the love that he gave everyone he knew.

I’ll end with a message from his mom:

He is ever a fighter, and forever my hero!
If you would like to sponsor a cape for a child in honor of Super Luke, click here and write Luke’s name in the customer notes so we can inform his family.