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

Courtney’s New Book!

If you don’t know Courtney Westlake, well, now is the time!

Courtney came in my life through the internet.  My husband had gone to high school with Courtney, and her beautiful daughter Brenna was born just two months after our first child. I had never met Courtney, but a friend sent me the link to her blog: Blessed By Brenna, after Brenna was born with Harlequin Ichthyosis – a very rare and severe skin disorder.

I had no idea that Brenna’s story would reshape my life completely.  Months after Brenna’s birth, I had become an avid reader of Courtney’s blog and in awe of their family’s strength and determination to seek joy in the midst of their very unknown circumstances.

It was Brenna who first sparked me to see Extraordinary children as superheroes. It was Brenna who inspired me to reach out to a stranger and let them know I see how amazing they are. It was Brenna who changed the course of my life forever.

Courtney has written a beautiful story that captures this journey.  Her book releases on Monday August 1 and is called A Different Beautiful. This book is so much more than their story. It is a mom sharing her experience of raising a daughter that looks differently and radiates beauty. Courtney shares her insight of what Brenna has taught her so far in her short 4 years, but also opens the door to help other parents raise kind kids who recognize beauty as well.

If you’re going to read one more book this summer…make this it!  You can preorder right now at this link!  http://amzn.to/29r3RVg

FullSizeRender (2) med

 

A few of our favorite Blogs!

If you’re anything like me, I can easily (and accidentally) get sucked into cyber-space and find hours escaping me the moment I find a new blog that I love! It was this very phenomena, actually, that inspired me to send our first TinySuperheroes cape to Super Brenna! To hopefully spare you some of the hours I’ve already spent, I wanted to share with you some of my favorite blogs from moms of Extraordinary TinySuperheroes!

 

Blessed By Brenna: celebrating a different beautiful

Courtney Westlake shares about their family’s journey, which inspired a new definition for beautiful when their daughter Brenna was born with a rare and severe skin disorder. Preorder her new book, A Different Beautiful here!

 

Enjoying the Small Things

Kelle Hampton writes this heartfelt blog about her family, including their journey with Super Nella, her daughter who surprised them with a diagnosis of Down Syndrome. She is also the author of a NY Times Best Selling Memoir, Bloom, about Super Nella’s first year of life.

 

Girl in a Party Hat

Amy Silverman shares with amazing humor in her writing while also giving us a peek at the inside of her life with her daughter, Sophie, who uses Down Syndrome as her superpower!

 

 

Hopeful Parents:  grassroots support for parents of kids with special needs

Christina_ShaverChristina Shaver started this “grassroots community where parents who understand what it’s like having a child with special needs can connect.” This site offers a forum for parents to actually connect and chat through!

 

Love That Max: about kids with special needs who kick butt!

Ellen Seidman is an established magazine editor who has created a powerful blog inspired by the story of her oldest son who is using Cerebral Palsy to reveal his superpowers!

 

 

Nifty Moma lifestyle blog

samantha niftymomoSamantha King is a lifestyle blogger who offers everything from party ideas, DIY crafts and recipes. One of her three sons was recently diagnosed with Type 1 Diabetes and we’re happy to have their family on our Squad!

 

Owens Family life, death, joy, adoption

karen owensKaren Owens shares about their life with Gavin, their grief after his death, and the joy that continues to come as they journey with their adoptive children who are overcoming special needs.

 

 

Special Needs Mom: celebrating the simple every day

suzanne perrymanSuzanne Perryman is a writer, crafter, reader and mom to two amazing girls, one who is battling Mitochondrial Disease.

 

 

 

Comment below with your favorite blogs! Self promotion is welcome here – so feel free to share your own blog as well!

Arch Grants Helping Us Soar!

tinysuperheArch Grants LogoWe are honored, grateful, humbled and EXCITED to share the amazing news that TinySuperheroes is a recipient of Arch Grants! Arch Grants is a “is a nonprofit organization that accelerates economic development by providing $50,000 equity-free grants and pro bono support services to entrepreneurs who locate their early-stage businesses in St. Louis.”

I learned about Arch Grants soon after my family relocated to St. Louis in late 2014. We are so honored to be among nine other companies to receive this round of Arch Grants. Arch Grants hopes to attract and retain innovative entrepreneurs to the St. Louis region. While Arch Grants wasn’t the reason we moved from Seattle to St. Louis, it has been a most welcomed surprise on our journey with TinySuperheroes.

St. Louis was my childhood home, and I am excited to raise our little family here. It turns out that St. Louis is not only an amazing place to nurture my family, but also my business. With this grant, we now have even more opportunities and resources to continue working towards stability in TinySuperheroes, which will allow for long term impact on the children our mission reaches.

While my name might be the one that shows up next to TinySuperheroes, please know that I am more than aware that TinySuperheroes is a sum of all of our parts – including all 10,000 TinySuperheroes soaring around the world!  We are so grateful for the continued support and encouragement from each and every one of you.

I look forward to updating you on updates about Arch Grants in the coming year, and I’d encourage you to check out the other amazing companies I’ll be working alongside in the process!

Exciting things ahead – one cape at a time!

pic from stl today arch grant

http://www.stltoday.com/business/columns/david-nicklaus/more-startups-collect-arch-grants/article_d8242b00-bd31-5ea6-bb3d-a7baf3a710ae.html

St. Louis Cardinal’s Rally Behind TinySuperheroes!

Check out the TinySuperheroes Squad on!  Click here to watch the video!

When I sent the very first TinySuperheroes cape to Super Brenna in January of 2013, I had a few hopes in store for that package.

  1. For Brenna to feel like a superhero.
  2. For her family to know that I knew she was a superhero.
  3. For other people to see just how Extraordinary she is, too!

Never did I imagine that this would become my life’s work.  Never did I imagine how blessed I would be by the thousands of families I have had the privilege of getting to know in person and from afar.  And NEVER did I imagine that two pieces of fabric could become a powerful source of hope, courage and strength for many.  But all of this has happened…over and over again.

My list of hopes and dreams for TinySuperheroes has grown, but my original desires for these kids to feel like superheroes, for them to know that I know they are superheroes, and for others to recognize their super powers remain at front lines of my journey with TinySuperheroes today.

Last night, the St. Louis Cardinal’s offered an opportunity to our local TinySuperheroes families that brought all three of these things to life!  Eight TinySuperheroes and their families joined us at the Cardinal’s game for Superheroes Night!  They got to mingle with Spiderman, Superman, Batman and Captain America … and best of all, they got to hand out their very own TinySuperheroes Squad Cards and reveal their super powers to fans at the game!

The glow on the faces of all of the TinySuperheroes (siblings included) was priceless. Getting to spread the word that our differences are our super powers is what TinySuperheroes is all about!

Super Liam, Super Bradly & Super Elise SOAR!

Super Liam, Super Bradly & Super Elise SOAR!

We are so grateful for the St. Louis Cardinal’s and for the experience they gave these families last night. We are hopeful that as TinySuperheroes continues to grow, the hearts in the communities around us will grow alongside us. And one cape at a time, we hope that ALL children with ALL abilities feel empowered to embrace what makes each of them unique and special.

Check out our photo gallery below!