Learning from Leaders

For awhile now I’ve been looking for opportunities to bring our message of inclusion to young students – I want to help them see that our differences are what make us Extraordinary! We’ve had a variety of opportunities with classes in the past couple of years, but today we had the privilege of bringing TinySuperheroes in full force!

Today’s adventure was made possible by Home State Health of Missouri!  We are so grateful for their partnership, sponsorship and commitment to enrich the lives of the children they serve.

The John Thomas School of Discovery is a unique Magnet school in Nixa, Missouri. I’ve known about this school’s awesome-ness for some time and I am so excited that all the pieces finally came together for us to share our Mission with the students there! It is so kind of them to open their doors to us.

We started the morning with their Leadership class. This group of 5th & 6th graders blew me away. It was obvious in the way they looked at me through my entire presentation that these kids want to change the world. It was clear in their eyes that they care about their school and the people in it.

My hope for these Leadership students was that they could see how one simple choice (like sending a superhero cape to a stranger) can create ripples that touch thousands and thousands of people.

I want them to know that the simple choices we make all day long matter…that at at any time one, of those choices could be the one that changes everything.

I hope that through my simple story they are able to see that their story really matters.

We had more in store for the Leadership class, too. We challenged them to their first TinySuperheroes Mission…with an ulterior motive of training them to conduct the same Mission with the kindergartners whom they would be empowering later in the afternoon!

  

With Home State Health’s generosity, we were able to make today SUPER special for the 69 kindergarteners at the school.  Each of the three classrooms became a mini Squad of their own, and each child received their official TinySuperheroes Cape!

It’s hard to say which was better – the smile on the faces of these 5 & 6 year olds as they received their capes, or the pride that beamed from the Leadership students as they cloaked each kindergartener.

  

It’s very hard to put an experience like this into words. Hopefully some of the photos will reveal how much love was radiating between these groups of kids. I hope that today planted seeds for many more fruitful conversations and friendships to come.

   

Today was a privilege. I am hopeful for more opportunities to reach kids with our TinySuperheroes Missions. We’re always grateful when people trust our heart for our Mission and give us the opportunity to help kids SOAR!

You can sign up for your child to receive Monthly Missions in the mail by clicking right here!

If your school is interested in hosting TinySuperheroes, we’d love to talk to you!  Feel free to send us an email at empower@tinysuperheroes.com

 

 

 

A TinySuperheroes Race for ALL Abilities

October is Abilities Awareness Month and on October 11 we had the most inspiring opportunity to celebrate it!

The Kirkwood High School Women’s Cross Country team hosted the second annual TinySuperheroes Race at their home meet this year!

The Cross Country team approached me last year because their amazing coach wanted to pursue a greater purpose for her team beyond running. The girls were so excited to support TinySuperheroes and on their own, came up with the idea of hosting a race at their home meet.

Last year we didn’t do much planning, but had a blast with about 10 kids crossing the finish line.  Needless to say, this year’s turnout of 50+ kids was surprising, exciting and INSPIRING!

Our race is designed for kids with ALL abilities! The short run is lined with cross country runners and family members from all over the area – all hooting and hollering for every single kid that ran, walked, rolled or was carried by!

We wish you all could have been there, but we’re happy to share some photos with you!  If you would like to host a TinySuperheroes Race in your area, send me an email at empower@tinysuperheroes.com

-Robyn

It’s the small things

“Sometimes we get so caught up in trying to accomplish something big, that we fail to notice the little things that give life its magic.”  -unknown

 

I want to share a little thing with you that is so very BIG.

Super Beau and his sidekick brother Super Gus have been on our Squad for awhile now. (Their sweet sister Super Anna is also on the Squad!)  They live in St. Louis so I have had the privilege to spend time with them, though not nearly enough.

Their mom, Emily, shared this today:

“This is totally what TinySuperheroes is doing for us. It’s been ingrained in his heart!”  – Emily Hepburn

 

When Super Gus was asked who his superhero was, he drew a picture of his brother Beau. It’s a simple thing, but what lies beneath this small picture gives me goosebumps.

Beau is diagnosed with Growth Hormone Deficiency and Opitz G Syndrome, a rare genetic disorder.  He has gone through dozens of pokes, tests and procedures.  He has regular therapies and his mom has regular insurance phone calls.

Super Beau’s older brother, Gus is his biggest fan.

Gus has watched his brother endure, persevere and overcome, and Gus thinks of his brother as a superhero.  If that isn’t motivation to continue to empower children as TinySuperheroes, I’m not sure what would be.

Thank you for sharing Emily! It is an honor to have your family on our Squad!

Spina Bifida Awareness Month

One of the things we value most at TinySuperheroes is our opportunity to raise awareness for the conditions that affect our TinySuperheroes and their families.

I learned quickly that awareness leads to funding, which is necessary for new treatments and cures.  So, for families who are reliant on new treatment options to help their children, raising awareness becomes a crucial component of their journey…and in small or big ways, we want to help.

Spina Bifida has become something that is close to my heart, because the TinySuperheroes on our Squad who are overcoming Spina Bifida every day have taught me SO SO SO much!

So, in honor of October being Spina Bifida Awareness Month, we decided to embrace it and share with the TinySuperheroes community all we can about Spina Bifida!  And to make it a bit more fun, we’ve designed an exclusive patch that is only available to folks who purchase a TinySuperheroes cape now through October 15! Inventory is limited, so hop on this deal – we’re also giving you 20% off your cape!  Use promo code spinabifida20 at checkout and start by clicking here.

We’ll be introducing you to our TinySuperheroes with Spina Bifida this month, and we hope to be adding dozens more before the end of October, but wanted to start by sharing a bit of information that you probably didn’t already know about Spina Bifida.

  • Spina Bifida is a neural tube birth defect, and develops in the child less than one month after conception.
  • In babies with spina bifida, part of the neural tube fails to develop or close properly which causes defects in the spinal cord and in the bones of the spine.
  • Spina Bifida occurs in three different forms, which vary in severity, but it is also known as a snowflake condition because no two cases are exactly alike.
  • Doctors are still not sure what causes Spina Bifida.
  • About 1,500 children are born with Spina Bifida in the United States each year.

As part of our campaign to raise BIG awareness for Spina Bifida this month, we created a Spina Bifida Resource Guide. We would love for you to be part of the solution in spreading the word, so please share this Resource Guide on your Facebook page and use the hashtag #spinabifidastrong

Stay tuned…lots of awesome live interviews coming this month with some of our Extraordinary Spina Bifida TinySuperheroes!

Much love,

Robyn

 

 

From a Wheel Perspective

Our oldest son, Super Rory, started Kindergarten last week. On the supply list was a yoga mat for rest time.

School started last Wednesday. We are pretty much behind on everything in our life, so we did school shopping on Monday…which meant both Target & Walmart were sold out of yoga mats. (Seriously?!) 

Monday night was meet the teacher night where the teacher kindly informed me that yes, he would need his yoga mat on the first day.

Tuesday comes around and I’m juggling 3 kids that afternoon, so before picking up Milo from daycare Rory and I hit up 3 random stores hoping for a miracle.  No yoga mats.  

There was no way I was going to take all 3 of them to the big sports store (Dick’s) at the mall, but my amazing mom stepped up and said she could run by there for a yoga mat that night.

So around 9pm the night before kindergarten, my mom shows up with a pink and purple yoga mat…….

It was a great yoga mat – beautiful actually – but Rory was MORTIFIED in the morning and was not going to take a pink and purple yoga mat to kindergarten…and you know, I kind of understood where he was coming from so I prepared to bend over backwards to save my son from utter humiliation (I am totally cool with boys using pink yoga mats…but Rory wasn’t into it).

So on the first day of kindergarten Rory, Milo and I get up, take Milo to daycare and then Rory to his new school…as did every other parent…so we parked a few blocks away and walked there. It was approximately 100 degrees so by the time we arrive (without a yoga mat). I am definitely sweating.

Ok – so Rory is off and Sheldon and I begin our expedition to the store we were avoiding the night before in hopes of trading the pink yoga mat in for a more manly color.

I grew up here – I know this mall – so I parked by the food court which is the shortcut to Dick’s.  I get Sheldon out, click the carseat into the stroller and have already strapped on the diaper bag when I see the yellow rope blocking off the food court doors. 

I considered getting back into the car and driving to another parking lot, but the whole carseat/stroller maneuver practically kills my back every time I get it in and out of the car, so I decided to walk. So Sheldon and I head down the parking lot, around a big corner where I know there is a JC Penney.

Walking with a stroller is not the same as being in a wheelchair…but on this fine morning I got a really interesting glimpse of what this journey would be like for someone in a wheelchair.

There was a sidewalk hugging the parking lot around JC Penney but I counted 4 times I had to “jump” the curb because there wasn’t a curb ramp. They were nice enough to mark the sidewalk edges with bright yellow paint, but no ramps. This works fairly ok for me pushing a stroller. I honestly am not sure how a wheelchair user would handle this situation. 

I get to the first JC Penney door … JC Penney doesn’t open for another 45 minutes.  JC Penney is a large store…so now I’m walking around it to find a door to the mall that is open. I am now about 1/3 the way around the mall from where I parked.

I find a parking garage where again, the sidewalk has no curb ramp.

I get to the Mall entrance (don’t underestimate my sweat at this point) and find an elevator to take us to the floor to get to Dick’s.  I get there to find two huge heavy wood doors into the Dick’s. The doors were beautiful but there was no accessibility button to open them. 

So again, doable with a stroller – not pretty and not fun, but doable. I’m not sure how a wheelchair user would handle this situation and there was no one else around to help.

I get inside Dick’s and find … stairs.  The only way to get into the store from here is to go down about 10 stairs.

I’m almost laughing at this point because I’ve never looked at the world through this lens before and holy cow – I cannot imagine if this is what I had to go through every day.

Now, to Dick’s credit, there was a wheelchair lift.  And the kind man at the counter at the bottom of those stairs asked if I needed to use it.

I’d like to think I’m not overly prideful, but it does creep in, and the first feeling I had was that I didn’t want help.  I wanted to operate it by myself but I had NO idea how to do it and frankly, I’m not sure if operating it by yourself is even an option.  So I waited for him to get his key out, turn the key, the lift came up in what felt like 20 minutes, I awkwardly opened the door and got in with the stroller and then it took another eternity for the lift to go down, all while the kind man stood waiting and watching.

Now, if I’m blunt…this situation felt humiliating. I’m not in a wheelchair and I definitely don’t want to assume I know what that would feel like. But I know amazingly able people who use wheelchairs and who are certainly far more independent than myself.  And it annoyed me that this is what they would have to do in order to get into Dick’s.

The yoga mats were upstairs. Thankfully there was an actual elevator to get me there. And THANKFULLY there was a black yoga mat. 

But guess where I had to make the exchange?  At the counter at the bottom of the first set of stairs. So back down the elevator we go, to the counter, make the exchange and then…you guessed it…back up the wheelchair lift.

If you haven’t ever ridden one, it is an experience. Somehow we can get loads of people up 30 stories in a skyscraper in seconds…but it literally takes minutes for a wheelchair lift to go up the equivalent of 10 stairs.

And the sounds that lift made…it just wouldn’t have been surprising if it had stopped halfway and never turned back on.

We make it up the wheelchair lift to the large heavy doors without an accessibility button.

A kind man is entering while we are about to exit. Perhaps he didn’t notice the large stroller…but he didn’t notice that possibly holding the door would have been a kind gesture. (How often have I not noticed???)

Then we walked around JC Penney on sidewalks without curb ramps (I counted 5 jumps) and eventually made it back to the car.

Next time you’re on an adventure for a yoga mat, I encourage you to take the journey as if you were in a wheelchair. It is really eye-opening.

Maybe if we all did this a little more often, we could help improve the environment around us so that truly it is accessible for everyone!

The first day of kindergarten went great and Rory loved the black yoga mat.

Dear Gabby

On Monday, July 10, Super Gabby earned her Angel wings.

Super Gabby was one of our first TinySuperheroes to ever receive a cape, and she was one of the first that I had the privilege of getting to know personally.

For a week now I’ve sat on this trying to figure out how I could possibly express in words what Gabby and all of this means to me. I only hope that in her time on Earth, I was able to properly show her how special I think she is.

Super Gabby was 11 years old and lived her life battling Epilepsy. You can read her original TinySuperheroes story here.

I hesitate to say I am in shock of her death, as I know so many people were so much more intertwined in her life, but Gabby was elemental in the change that TinySuperheroes has had on my heart. She is a part of my daily life even though she probably didn’t know. But I can’t seem to wrap my mind around her being gone.

I can’t even remember how I first met Gabby…can’t recall who introduced me to her or how we met.

I dearly love her mom, Kim, who welcomed me into any situation with open arms. I more recently got to know her dad – Gabby was surrounded by love.

One day I was parking my car and walking into Seattle Children’s Hospital and I distinctly remember wondering how my life got me to this place that I would have the privilege of spending time with Gabby there.

That’s what spending time with Gabby was – a privilege.

I could write about Gabby for hours, but there is one thing that Gabby taught me that I will never. ever. ever. ever. forget.  It changed my heart completely.

On one of my sweet visits with Gabby and Kim in the hospital, I found them working on an art project together. I can’t say this with total certainty, but I want to say they were painting a butterfly. This was early in my TinySuperheroes journey. 

I know that I still have a lifetime of things to learn – but I REALLY didn’t know anything then.

So, in full transparency, I remember wondering why Kim was painting a butterfly with Gabby if Gabby couldn’t physically participate. I ignorantly assumed that if Gabby’s body wasn’t voluntarily participating, this meant Gabby wasn’t present.

I’m not sure I’ve ever made a more inaccurate assumption.

I feel sick to my stomach that this crossed my mind. It is humbling to admit. I’m willing to reveal my own ignorance because it is perhaps the most important thing I’ve learned in the last 4 years.

Gabby (and Kim) taught me how to see people.

Gabby (and Kim) taught me how to see people. Like really see them. You see, when I first met Gabby I saw that she was non verbal and had little control of her body. I assumed she wasn’t present.

Gabby had the grace to teach me that I was wrong.

I feel grateful beyond measure that I was able to learn this early in our friendship because otherwise I would have missed SO MUCH.

Because of Gabby, I know (at least better) how to talk to people.

I know to look them in the eyes even if they don’t look back.

I know to talk to them (not the person with them) even if they don’t talk back.

I know to slow down and learn how they communicate, even if it is different than me.

I know to take the time to get to know them.

I know to never assume anything about anyone. Everyone has a story.

I am forever grateful that she and her mom had the grace to allow me to learn this. I can only imagine how hurtful it must be to be present but not seen.

Gabby was present – it didn’t actually take much to learn that about her. She filled every room with peace. Something I could actually feel. I had the honor of being with her outside of the hospital when things were stable and in the hospital when things were uncertain, but Gabby’s peaceful presence was a constant. 

I would have loved to hear what Gabby had to say in words – I’m confident she has the kindest soul. But what Gabby said just by being her was more than enough.

Gabby – I miss you.  I know your mom, your dad and your whole tribe of people miss you so much that it hurts.

I also know that while your time on earth may be finished, your work here will never be done. You have taught me something that has changed the way I treat people. I don’t know that there is anything more powerful than that.

The ripples of your love will last forever.

We will take care of your mom. She is so strong, just like you.  We will make sure she knows that we all know and remember you. We will hold her close and share sweet stories of the way you loved on all of us. We will continue to send love to your dad as well. I will make sure your sweet cousins get their Missions – they adore you.

I am sure our TinySuperheroes Angel Squad greeted you appropriately.  Please send all of our love to Super Braden, Mabel, Connor, Angel, Logan, Caden, Case, Moriah, Alayna, Sam, Israel, Elijah, Channie, Caroline, Andy and ALL of the TinySuperheroes who have gone before you that their Squad loves them now more than ever!

Fly high sweet girl.  Can’t wait to see you again.

We would love for you to leave a comment to show our support for her family.

Happy Feet! (not the movie)

Until I had a son born with a congenital birth defect in his feet, I never really thought too much about my kids’ feet.

But now, not only do we think about feet but we celebrate them!

Today we had the joy of attending the Happy Feet Party hosted by Super Sheldon’s orthopedic surgeon (Dr. Matthew Dobbs) and his team!

The impact that Dr. Dobbs has on his patients is unique. I can’t even imagine how many children he has treated for Clubfoot and/or Vertical Talus. I’ve mentioned before that we are very fortunate to live in the same town as the specialist for our son’s diagnosis, but today made that even clearer.

Families travel from all over the world (literally…from everywhere) to have their children treated by Dr. Dobbs and many of them made special accommodations to be in town for today’s party!

We met families from Canada, Iceland, Texas, Rhode Island, Florida, New Mexico, California, Illinois…I could go on!

Dr. Dobbs has changed the lives of each child and family forever.

And the best part?!  The theme of this year’s Happy Feet Party was superheroes…so you know I couldn’t resist bringing TinySuperheroes capes!  We were able to empower ALL of the nearly 100 kids who came to the party!

My heart could have leapt out of my chest to see these kids spend the whole day running around in their capes…and for a Happy Feet Party…watching kids run is extra special.

We are so grateful for Dr. Dobbs, his entire staff, Heroes, Cope & Kids for bringing Spiderman and Captain America, Santa Needs Help volunteers and all of the families who made the party so special!

Most definitely our TinySuperheroes Squad is much stronger after today!

Own It.

Sometimes it is hard for me to talk about TinySuperheroes. I mean, I talk about TinySuperheroes all the time…but when it comes to really talking about it… I often keep it to myself.

TinySuperheroes has woven itself deeply into my heart. When faced with an opportunity to share it with someone, I have a deep fear that the person on the other end won’t “get it”.

Really talking about my vision for it leaves me feeling totally vulnerable and often I’m not willing to take the risk. What if I get rejected? … What if they don’t see the impact the way I do? … What if they don’t think it’s important?

When I think of TinySuperheroes, I think of my 6 year old friend Super Lily who is having major hip surgery today and told the doctor beforehand that she “was scared, but also brave”.

When I think of TinySuperheroes I think of my friend Super Runner, whose cape draped his casket at the visitation of his funeral.

I think about Super Remedy who, while going through her own brutal chemotherapy, helped me deliver capes around the hospital to other kids who needed them.

I think of Super Gabby who just got to sleep in her own bed last night after a several week stay at the hospital.

And I worry that when I tell someone about our superhero capes, that they won’t think about these things, too.

That they won’t see the hope or joy that I’ve witnessed or the importance of kindness and inclusion.

It all feels like a lot packed into one superhero cape, but it is all there…I know it is.

I’m 32 and still learning how to trust myself. How to trust my voice and intuition. And I’m learning to own my passion for TinySuperheroes. To show up just how I am, with what I believe and who I believe in. To not shy away…even if it leaves me feeling vulnerable.

This year I met a new friend named Rikki. Our 5 year olds play soccer together. While the games are riveting, we often find ourselves chatting for a full hour before we realize the game is over. (We really do care about our kids’ soccer game…we just have a lot to talk about.)

I told Rikki about TinySuperheroes and she “got it”. She came back the next week wanting to help. Rikki happens to be an amazing photographer (seriously check her out) and offered to do photos for TinySuperheroes…And then she actually scheduled it.

During the photoshoot, amazing things happened. I watched as Rikki’s daughter, Danni, learned how to navigate Super Liam’s wheelchair. And I felt deeply how transformative experiences like this can be for the little people around us – for Danni AND for Liam.

Today Rikki sent me some of the photos. My heart is mush. I don’t always have the perfect words to communicate what my hopes are for TinySuperheroes, or how it has so deeply changed my heart.

I don’t always have the words.

But I do have this photo.

And it says it all.

Thank you, Rikki!

Perseverance

Micah’s Miles in full force!

Perseverance is defined as “steadfastness in doing something despite difficulty or delay in achieving success.”

Perseverance is our theme for the month of May. It feels quite fitting for me personally. I’m in a tough season of life at the moment…a season that is simultaneously full of blessings and full of trials…and I’m finding that reflecting on how our TinySuperheroes have persevered motivates me to do so as well.

This month we are excited to introduce Super Micah.  We will be sharing his full story in the coming days, but perseverance is no doubt one of his super powers.

Like Micah, so many of our TinySuperheroes persevere through circumstances that are hard. Often the light at the end of the tunnel is quite dim before it is bright, but our TinySuperheroes and their parents keep fighting their way towards it.

For me, running TinySuperheroes as an organization is a test of my own perseverance. For 4 years it has been an honor to walk this journey, but I’d be lying if I said it was easy.  Frankly, it is the hardest thing I’ve ever done (also the most fulfilling). And in this particular season of life – raising 3 boys the with newborn at home recovering from surgery (and a cough), while trying to fulfill the full-time amount of work I have to do…well frankly I can really resonate with feeling the “delay of achieving success”.

As I write this post, I’m also thinking about the many customers who are waiting for us to ship their capes, the kids on our waiting list who are anxious to receive their capes, our website that is still featuring our April theme and the hundred+ emails that remain unread………

But in May…we will PERSEVERE! We will measure our success on our ability to keep moving forward even if it feels at a snail’s pace, just as Super Micah perseveres through marathons…mile after mile, year after year. I encourage you to do the same in whatever race you are currently running.

Stay tuned for our May Mission on perseverance that ships May 15 (but you can sign up now!) and I can’t wait to share Micah’s full story with you!

And as our friends at Team Hoyt say, “Yes You Can!”

-Robyn

Super Sheldon Post-Surgery Update!

We’ve been so overwhelmed by the loving support that you all have shown us.  I wanted to update you on Super Sheldon (at risk of feeling like I’m bombarding you!)

In 2015 our middle son, Super Milo, spent 8 days in the hospital fighting RSV. Other than that, and many quick ER visits!) I’ve never been on the parent side of a pediatric surgery. I’ve visited TinySuperheroes after many surgeries…even heart transplants…but I didn’t know what the other side was like. In many ways, I still feel like I don’t know what it is like. Even in surgery, we have been very blessed.

First let me tell you the best thing that Vertical Talus has given my family – a deeper sense of community. I always knew community was important to me. The TinySuperheroes community is as dear to me as my own family, and now we have been warmly welcomed into a new community. Two months ago I’d never heard of Vertical Talus. Suddenly I feel connected to families from all over the world who generously share their experiences to help newbies like me. It feels so good – I truly hope TinySuperheroes can grow to make people feel the way that other ‘happy feet’ families have made me feel.

Sheldon is becoming a pro at cast removal!

Prepped and ready for surgery.

Super Sheldon with Dr. Dobbs

Super Sheldon’s surgery went great! Dr. Dobbs says his feet are in great shape! We won’t see them for awhile. He’s in casts now – they are quite bigger than his last to account for swelling – and the only thing I can see are his cute, swollen toes. I’m kind of glad I can’t see under the casts yet – if his feet are as swollen as his toes, I might freak out! He’ll have casts on for the next 6 weeks until they go back in and remove the pins that they just placed.  (6 more weeks of casts…Super Sheldon’s got this!)

 

Back in my arms after surgery!

The recovery was a little tough on me – it’s quite hard to see your sweet baby in pain and not really be able to hold him (in any normal way at least) because his feet needed to be elevated. The staff at the hospital was amazing and they were able to control his pain, which I am so grateful for.

Super Sheldon and I had the honor of empowering a few TinySuperheroes during our quick 30 hour stay. Most notably was our new friend and sweet roommate, Super Mia! It was such a blessing to share a room with her family, and Sheldon & Mia were able to get in good sync with crying. Super Mia is 2.5 years old and uses Down Syndrome as her super power. She had just gotten her tonsils and adenoids removed and was being cared for by her loving mom and dad. Sheldon happened to bring a few capes with him so we loved being able to give a TinySuperheroes Cape to her!

Our new friend Super Mia!

So Sheldon was able to come home on Friday afternoon and while he’s definitely still needing Tylenol regularly, he’s starting to perk back up to his old 9-week self! His sidekick brothers are doing a great job of loving him and not touching his feet!

Thanks again for the love! It has been so wonderful meeting other Vertical Talus and Club Feet families and I hope this post can be an ounce of support for someone else out there!

-Robyn