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

Surgery Day is Tomorrow!

Well, everyday of this Vertical Talus adventure with Super Sheldon I find myself understanding more and more about our TinySuperheroes Squad. The truth is, what I’m really understanding is how much I will never really understand what many of these families survive…but I hope I can learn to love them better with each ounce of experience I gain…and I hope they will forgive all of the things I don’t understand.

For example, I now kind of understand what it is like to try to get to 4 appointments + surgery in 1 week (it’s a full time job). I now kind of understand what it feels like to have to advocate for your child – or to trust your gut to get a second opinion (it’s exhausting and terrifying). I now  understand what it’s like to feel like you’re missing out on the sweet moments holding a baby without full casts on (it breaks your heart).

And soon I will understand what it feels like to hand your 8 week old baby over to doctors who will put him to sleep, cut him open and fix him. Soon I will understand how long that hour-long surgery might feel.

Super Sheldon goes in early tomorrow morning. The surgery seems pretty simple compared to what many of our TinySuperheroes have endured. They will place a pin in a bone in both feet will do a tenotomy on his achilles tendons. I am confident he is in the best hands.

I’m so grateful for the support you all have given my family and I truly hope that Super Sheldon’s journey will continue to humble and mold my heart into one that can create lasting impact on our TinySuperheroes. I’ll be sure to keep you posted tomorrow!

Many thanks!

Robyn

Perspective & Vertical Talus

Perspective. If I had to sum up my journey with TinySuperheroes in a few words, perspective would be at the top of the list.

On February 24, 2017 we welcomed our third son into our family, Super Sheldon. It’s crazy how instantaneously it seemed impossible to imagine life without him and terrifying to imagine life with 3 boys! (Just being real here…three feels a little overwhelming…)

When Super Sheldon was born, his feet looked funky. It was clear that his feet had been stuck in a strange position while he was on the inside (I’m pretty sure right under my ribs) but less clear if something more substantial was wrong.



At 2 weeks old, an X-Ray revealed that Sheldon has bilateral congenital vertical talus. I’d definitely never heard of it and am still not positive how to pronounce it. As I understand it, it is a deformity of the foot that causes the talus bone (the bone that connects the lower leg to the foot) to point the wrong direction (it typically points towards the toe, and in these cases points vertically toward the ground).

Vertical Talus is completely fixable and his early diagnosis will only help. It will involve a bit of chaos (as I feel it) in the coming months including many sets of full leg casts, 2 surgeries and a set of awesome boots that are connected by a bar. (Treatment is similar to club foot.)

While I certainly have feelings of angst, hesitation and fear, those feelings are no doubt trumped by the feeling of gratitude – something that the TinySuperheroes community alone has taught me.

Before TinySuperheroes, months of casts and surgery on my sweet new baby would have felt paralyzing. I would have wondered what we did wrong…worried about what this could mean for his future…fear the stigma of having a child born with deformed feet would carry…

But with TinySuperheroes, I see how blessed we are by this diagnosis.

Blessed because it is something they can correct.

Blessed because it shouldn’t affect his gross motor development.

Blessed because they caught it early.

Blessed because the doctor who developed the treatment for Vertical Talus, is in our city!

Blessed because we have health insurance that will cover this.

Blessed that we have family around to support us.

Blessed because we have Sheldon, who is just perfect.

Blessed because TinySuperheroes has taught us that differences are super powers!

Because of TinySuperheroes, I don’t want to hide his casts. I want to strap on his cape and let Sheldon be an ambassador for our TinySuperheroes who overcome things like this and SO MUCH MORE. I want to use this opportunity to bring awareness and encourage kindness.

So tomorrow we go to St. Louis Children’s Hospital to see Dr. Matthew Dobbs and Sheldon will get his first set of casts. Tonight, I just want to say thank you. Thank you for teaching me how to see the joy in all things, at all times. You’ve truly changed me and I’m forever grateful.

We’ll keep you posted, but Super Sheldon is ready!

PS – If any of our TinySuperheroes have had full leg casts…how do you prevent the inevitable disaster of a terrible diaper!??!??!?!?! (Seriously…I need to know!)

 

February’s Superpower: LOVE

Happy February!  I can’t believe how quickly the New Year came and went!

I am so excited to give you a sneak peek into our February Mission for our TinySuperheroes Membership!  If we can all agree on one thing, it’s that none of us will be hurt by putting more love into the world, and I believe it is essential for our children not only to know they are loved, but to be proactive about showing love to others!

In February’s Mission, we will be talking about just that, as well as learning about Congenital Heart Defects that affect 1 in every 100 kids!  We’ll meet Super Madi and learn how her scars from open heart surgery are visible evidence of her strength!

By the end of February’s Mission, your children will have created a beautiful set of chimes, and each time they ring, we hope they will remember just how loved they are!

We would love for you to jump on board and sign your child up for our Membership today!  February’s Mission will arrive just in time for Valentine’s Day (so would make the perfect gift!)

Click here to sign up!

Much love,

Robyn

 

Making Room to “Be You”

img_6711-jpg-1-copy-1

I had an amazing experience this morning that I just couldn’t wait to share.

From time to time I am blessed with the opportunity to share our TinySuperheroes stories with groups of people and it’s always amazing to share with other kids.

For the third year in a row, I had the privilege of spending time with a family group at North Kirkwood Middle School in St. Louis. Since I have been with them before, I wanted to do something a little different, so I brought our “Be You” poster from our first Membership Mission for them to do together!

After encouraging them to channel their 7 year old superhero selves, a room full of 11-13 year olds got on board to complete their Mission!

But something really special happened. While everyone was drawing their pictures and figuring out their super powers, one girl pulled me aside. She said that she usually doesn’t share this, but that she felt comfortable and safe within this class…and she wanted to share that she can relate to our TinySuperheroes because she has had over 48 surgeries in her life!

She wrote all about it on her poster, and at the end of our time together, she stood up to tell all of her classmates about her experience.

Her story is Extraordinary, but what I think is worth a moment of reflection is that it was in this scenario, around this conversation that she felt safe to share. The confidence and pride that radiated from her as she educated them about the brain tumor she had as a baby and the shunt she has now made me feel SO proud of her.

The whole experience made me realize that one of the things we need to give each other more of is time and space to be who we are. And in that space and in those conversations, we are all more comfortable with sharing the unique experiences that makes us each Extraordinary.

Thank you Mrs. Lancaster & Dr. Moore for making room for your students to feel proud of who they are!

Check out our Membership and empower the kids in your life!  www.tinysuperheroes.com/membership

how-to-choosethe-best-decor-for-your-sofa-colored-cushions

Launch Mission: Be You!

,

TinySuperheroes Membership Launch!

All Kids. All Abilities. One Squad.

Today is a day I’ve been working towards for a long time. It always feels terrifying to put something new out there…especially something that is close to your heart. But for about a year now, my heart has been transforming within TinySuperheroes, and the new Membership that we are releasing tomorrow (ahhh!) is the manifestation of my desires for the growth and future of TinySuperheroes.

For the first 3.5 years of TinySuperheroes, we have been working towards fulfilling our Mission of empowering Extraordinary kids as they overcome illness or disability. With over 10,000 capes sent to kids, I am pleased with what this community has accomplished.

Our capes have traveled to thousands of surgeries, been admitted to the hospital countless times, and have even served as symbols of hope at services when some of our TinySuperheroes have left earth to join our Angel Squad.

I am so thankful that our capes have brought hope and joy to many families, and we’re certainly going to continue sending capes, but I believe our TinySuperheroes community has the power and opportunity to do so much more, and we want YOU to be a part of it.

I’ve been working on this project for awhile now, but the seeds were planted during a brief, subtle, experience at the grocery store.

I was in line at checkout, and while I almost always find a way to spark conversation with people in line while we wait, I hesitated to do so with the man behind me who looked quite different than me. I wasn’t trying to be rude and I certainly wasn’t trying to offend him, but I realized in that moment that I was treating him differently.  And just as mortifying … I realized that my four year old was watching. It hit me like a ton of bricks.

So I started doing research and was shocked to find out that 3 and 4 year olds demonstrate the same level and type of bias as adults.  And not so surprising, children learn their own parent’s prejudiced attitudes simply by observing how their parents interact with people from other groups.

With my own insecurities, fears and shortcomings staring me right in the face, I realized that my actions will most likely determine how my son treats children at school who look differently than he does.  

Because of TinySuperheroes, I have had the opportunity to meet kids from all different walks (and rolls) of life. I’ve met amazing kids battling cancer, others using Down Syndrome as their superpower, some overcoming Spina Bifida and others fighting Rare Diseases. With each child I met, my desire for the world to know about their Extraordinary strength and courage only grew.

But I began to see that the people in my life outside of TinySuperheroes were not having the same experiences. And more notably, their kids were not having these experiences. It began to make sense why kids would avoid sitting at a lunch table with a child in a wheelchair…if they’ve never met or talked to a child in a wheelchair!

I believe that TinySuperheroes can bridge this gap. If we proactively introduce children to things outside of their norm, remove the fear associated with differences, and open doors for conversations within families, we can mold a generation of kids who are kind.

So this is where the TinySuperheroes Squad Membership comes in. Our Membership is for ALL kids with ALL abilities! Each month, the special child in your life will receive a unique package in the mail. In each month’s TinySuperheroes Mission, they will meet a new TinySuperhero, collect trading cards, participate in character-building activities, and earn patches for their capes!  

My hope is that over time, after meeting kids with a variety of differences, the wheelchair will no longer feel scary, and talking about the wheelchair won’t be avoided! Just as I hope that my son will be able to embrace the things that make him different than the other kids at school.

So there you have it. I’m nervous, anxious and excited…I can’t wait to show you our video and the actual details of our Membership….and we really hope you’ll sign up!

Much love,
Robyn

Learn More About Our Membership Packages (Now Live!)

www.TinySuperheroes.com/Membership

TinySuperheroes is partnering with The Mighty!

We’re thrilled to announce a new partnership that will bring our resources in front of The Mighty‘s wide-reaching readership. We will now have a growing home page on The Mighty and will appear on many stories on the site.

The Mighty is a story-based health community focused on improving the lives of people facing disease, disorder, mental illness and disability. More than half of Americans are facing serious health conditions or medical issues. They want more than information. They want to be inspired. The Mighty publishes real stories about real people facing real challenges.

We’ve been fortunate enough to see several of our TinySuperheroes’ stories pop up on The Mighty, and are always encouraged by the impact they have made by doing so!

We encourage you to submit a story to The Mighty and make your voice heard!

the-mighty

She May Not Be Brave, But She’s Obviously a Superhero

We are excited to share this post with you, written by Hillary Savoie – the mother of Super Esmé and SO much more!  

12814456_10153845166195236_8456377304851250659_n

When I was newly pregnant, I had this overwhelming feeling that this was it—this was where the rubber met the road. It was time for me to fully become the kind of woman my daughter—I’d always known my first child would be a girl—could look up to.

Looking down at those positive pregnancy tests, which I took obsessively over the first few weeks, I imagined the things I would teach my daughter by my example. I realized quickly that there were things I’d need to learn to do better in time to teach her. I imagined how I would guide her, helping her grow into a confident, thoughtful, powerful girl and, eventually, woman.

But then my daughter arrived. Before I even saw her clearly, everything changed. She arrived, Esmé, tiny and fragile—struggling to breathe, to move…to survive.

Over those first hours, days, months, I watched her battle for the tiniest gains.

And soon it became clear to me who was going to learn from whom.

She was going to teach me.

It was clear who was tougher than whom.

It was her.

This little child—who could not hold her head or drink without choking or sputtering—was so much tougher than I was.

That was the undeniable truth.

Within weeks of her birth, my child had completely humbled me. She was my superhero, come to change everything I thought I knew about life, parenting, and love.

 

The Responsibility of Bravery

I shy away from my daughter being called brave. It makes me cringe—even as I say it to and of her, because I do. But, I hesitate as I say it, because, here’s the thing: I don’t know that she is brave. Bravery means someone is ready and willing to meet a challenge. It implies a choice.

Esmé doesn’t have a choice but to be tough. There is no alternative path for her.

The very act of Esmé’s daily life requires her to face challenges—painful, intrusive, terrifying, and apparently insurmountable challenges.

Life hasn’t given her a say in the matter.

Bravery is not the responsibility of children—it is the obligation of adults. It is the job of the adults in her life, the people who are lucky enough to exist in the meaningful circles she builds around her, to be the brave ones. Be ready and willing to fight beside her—to find ways to make doctor’s visits less painful, therapies more fun, and procedures less scary, even as we want to cry just from watching.

Facing down the insurmountable day-in and day-out isn’t easy—not everyone is brave enough to choose to be there with Esmé. And so we search for and accept only the doctors, the therapists, the family that is.

13305202_735608026580219_6321360356257471261_o

Loving a Superhero

While I am troubled by the idea of my daughter being called brave, I am not, as you might have guessed, similarly troubled by the idea that Esmé is a superhero.
In fact, I fully embrace it.

As I wrote in my first short book, Around and Into the Unknown, Esmé’s genetic differences often make me think of superheroes like the X-Men and Spiderman. That like these characters, my daughter has something that makes her different, at the level of her genes. This difference is catastrophic in many ways—but it is also part of what makes her Esmé. Which is pretty great, because Esmé is the most determined, kind, clever, and funny person I know. I cannot help but believe that the genetic differences that make her who she is are more than simply errors of genetic multiplication and division.

They mean something more. What this is, I cannot claim to understand—not fully.

Like Esmé, superheroes do not have a choice but to be different—their bodies require them to face down their differences. Like Esmé, their choices come in the form of how they perceive their differences, what they do with their differences, how they use them.

Every time I watch my daughter get up from falling again and again, trying to pull her uncooperative limbs into order, bruises raising on her slender legs, I see her make a choice between two paths: trying or not trying to do the impossible thing. Each is difficult in it’s own way. After two years of being able to pull to stand, but not yet having let go or taking an independent step. (After four years of finding and loosing words or and over, and after five and half years of struggling to safely swallow)…no one would be surprised if she stopped trying. But stopping trying is, its own kind of pain and frustration—it is accepting a lack of independence. It is saying, “I cannot win this battle,” which is a battle of a different sort.

I see these two paths being weighed behind my daughter’s eyes sometimes when she watches other children racing passed her. I see it when other children speak to me, and I, understanding their words, speak back
No matter her choice it is a battle.

img_0511-web

Choosing Our Battles

This makes me think about the larger role of superheroes. We think it is all about the “bad guy,” but it isn’t. The role of superheroes is to make us see the world—and our own choices—differently. It should be to move the rest of us, those of us who have choices, toward greatness. Superheroes should inspire our bravery.

This is the deeper, knowable, importance that is hiding in the errors of division and multiplication in my daughter’s DNA. These are the truths that open up in front of us when we walk headlong into loving someone like Esmé: My daughter makes me brave. I am not a brave person; I can only be brave for her because it was demanded of me…because my daughter demanded it of me. This is the thing that people don’t understand when they hear about our day-to-day life, and say “she’s so lucky to have you.” I am brave, but I am only brave because my daughter demanded it of me. And so, I when I reply, “No, I am lucky to have her,” I don’t only mean that I am lucky she is here, because I love her, but because she has made me who I am.

And it isn’t just me. I in the five-and-a-half years since my daughter entered this world I have watched the ripple effect of her existence. She changes people. The people who really, truly, honestly love her, they are different for knowing her. They are better. I see it in them. They are the people who saw the love gauntlet she laid down for them, took a deep breath and said, “Ok, bring it on.”

This is the battle we are lead to when we love a superhero.

 

hillary

Hillary Savoie is a writer, advocate, and mixer of killer cocktails. She is also mother to Esmé, a beautiful little girl with multiple rare genetic conditions. Hillary has blogged about life with Esmé since 2012. Her writing has appeared on Motherlode—the NY Times parenting blog, The Mighty, Romper, and the Huffington Post Blog, among others. In 2015 she published two short memoirs, Around and Into The Unknown and Whoosh. Hillary is the Founder and Director of the Cute Syndrome Foundation, which is dedicated to raising research funds for and awareness of PCDH19 Epilepsy and SCN8A Epilepsy. Hillary holds a doctorate in Communication and Rhetoric from Rensselaer Polytechnic Institute, which was great preparation for parenting Esmé, who is an expert in nonverbal persuasion. In her free time she enjoys gardening, dancing to Beyoncé and the Muppets with Esmé, snuggling her geriatric cat, Chicken, and dressing her daughter up as famous women from history. Follow her on Twitter and Instagram @HillarySavoie and Facebook @HillarySavoieWriter