A TinyNote from Robyn 9.15.19

A TinyNote from Robyn…

“Where is my Cape?”

“Where is my Cape?”

We totally understand why you are asking this question, and we are genuinely happy that you are excited to get your cape!  We try really hard to communicate with you as much as possible, but we know there are gaps, so I wanted to try to fill one of them today!

I’ll start with this – our shipping strategy isn’t perfect. We are actively working on making it better. The big changes we want to make will take time.  One of our high-level goals is to reduce the wait time for capes (TinySuperheroes should not have to wait for their capes!), and that is our main consideration in the decisions we’re making on shipping.

But, that will take time for us to build, so I’m going to tell you how we do our shipping now so that you feel more in tune with us!

When it is time for us to ship your cape (I could write 3 of these posts to answer questions on how we know it is time…but for now, we’re starting here…), here is what happens and who is doing it…

1. Approximately 1 week before we print your shipping label, we send you an email and a text with the opportunity to share your Squad Page again!

We do this because we hear from a lot of folks AFTER they get their cape that they were hoping to raise enough to get their cape personalized.  When this happens after we have already shipped it, it creates a lot more work and more costs, so we want to make sure that anyone who is hoping to have their cape personalized has enough notice and time to do so before we ship.

2. Robyn does some double checking to make sure we have your address, size and color correct, and then Robyn prints your shipping label at HQ.  You get notified that your shipping label has printed, but it has not shipped yet.

3. Someone from our TinyCrew takes the labels and drives in their car over to Project Inc. We’re about 10 miles away from each other.

Project Inc is an organization that we partner with for shipping.  For over 60 years, Project, Inc. has transformed the lives of adults with developmental and intellectual disabilities in the St. Louis area.

4. Our friends at Project Inc. package your cape, put your shipping label onto the package and give it to USPS.

Depending on how many labels we give Project Inc at one time, your cape will be given to USPS from Project Inc. within 1 – 7 days.  

5. When USPS scans your package for the first time, you will get an email with the tracking number and your cape is officially on its way!

We know this takes longer than Amazon Prime, and it even takes longer than we want it to, but using this process, we have sent over 20,000 capes to Extraordinary kids in 2019 alone, and we greatly appreciate your patience and support!

PS – there is one way to hack our system. When a TinySuperhero’s Squad Page hits the personalization goal of $120, our seamstress Terri steps in and works her magic quite quickly. We ship those capes directly from HQ!

If you ever have questions about where your cape is, we’d love to hear from you at Capes@TinySuperheroes.com

The Journey

It all starts with a cape.  If our capes do nothing more than bring a smile to a child for a brief moment, it’s worth it. However, TinySuperheroes is so much more than a cape. It is a whole journey, and the cape is just the beginning. 

The TinySuperheroes Journey aims to change the world, and with enough TinySuperheroes on our Squad, we might do just that. We want to change the way the world sees people with disability or illness. We want people to see differences as a superpower, as something to be proud of, because if we were all the same, the world would be a boring place! 

A kid is nominated to be a TinySuperhero for many different reasons. But, each kid is battling a fight that is hard and important. This has caused our Squad to be FILLED with kids of all ages and abilities from across the world. And once they receive their cape, they are an official TinySuperhero Squad member! With the force of thousands of children with unique abilities, thoughts, and experiences on our Squad, immense change is possible. 

Each month, our Squad gathers together (with the help of the internet) to complete a free mission and unlock a superpower. These superpowers are moral qualities to help prepare our Squad for challenges they may face as they navigate the world around them, and the mission always provides a tool as a reminder of this superpower that they are capable of. Some of the superpowers that our TinySuperheroes have unlocked so far include Love, Hope, Mindfulness, Truth, Kindness, and Curiosity. By seeing other kids do the same activity at the same time makes our Squad feel like they aren’t alone in their battles. Our missions have helped combat bullying, increase inclusion, and raise awareness. For each mission completed, we mail a patch to each TinySuperhero’s home for their cape. This builds a sense of accomplishment, and not to mention, it is just plain fun! 

This is all shared through social media. We have a support group, composed of mostly Super Moms, with over 15,000 members. We have had moms from small towns with a TinySuperhero with a rare diagnoses connect through our group. They have felt isolated and alone, and through our community, they have found support, love, and answers. Our community is a powerful entity and growing rapidly every single day.  

One of our favorite things to do is celebrate with our Squad! We have created a Birthday Program to make sure every Squad member feels special on their birthday! (There is even a really cool birthday patch for their cape!) We also like to celebrate important life milestones – like walking for the first time, talking for the first time, and more!

We are there for our TinySuperheroes even as they gain their Angel Wings. Our Angel Squad may be the most sacred, powerful aspect of our Journey. We provide the opportunity to honor, love, and keep alive the memory of our TinySuperheroes who pass away. We have a special patch that we send the families of our TinySuperhero Angels. We remember them on their birthdays. We remember them on the anniversary of their Angel days. They become part of our Angel Squad, and they are a very special group. 

Our Journey doesn’t end there, though. We have many goals. We want to be in hospitals- from the very beginning of the diagnosis, our cape is there. We want to be in schools to help teach about inclusion. We want to be in therapy sessions to provide our Squad with even more tools. We want to have local meet-ups in every state. Just like our Squad, TinySuperheroes is growing and learning every single day, and we are so excited to see what the Journey has in store for us in the future. 

So, what makes TinySuperheroes different than buying a cape for $5 at the local Walmart? Our Squad. Our Community. The Journey. 

A Mom’s Intuition

Intuition is a strange, impressive phenomenon… But a mother’s intuition is so much more. A mother’s intuition is a force that shouldn’t be reckoned with. It’s a feeling that comes from deep inside. It is unexplainable. It is powerful.

A mother’s intuition saves lives.   

It is no wonder that our Squad of TinySuperheroes is so strong and brave. How could they not be extraordinary when they have real-life Super Moms raising them? 

These are just a few examples of how our Super Mom’s have used their superpower of intuition: 

“One afternoon, my husband Jon and I were driving down the road when an ambulance pulled out of the fire station. I told Jon if the ambulance turned towards our house I was turning around. Well, sure enough it turned in the direction of our house, so the chase was on. A feeling came over me as if I were being choked, and I told Jon I knew they were going to our house. Of course he is telling me what a nut I am. We got stuck at a red light. I wanted to run it, but Jon wouldn’t let me. He told me to calm down and that the ambulance was long gone, but I told him I felt like I was being strangled and was going home. Turning onto our street I could see the ambulance with both back doors open and lights still flashing at the end of my road… they were indeed at our house. I ran both stop signs and saw the EMTs walking to the ambulance with our son Braylan. He was stung by a bee and is allergic. Our older son shot him with his Epipen while grandma called 911. Jon’s mom asked how we knew to come home… Jon said, ‘We saw the ambulance pull out, and Lisa just knew.’ Mother’s intuition… it’s real.” -Super Mom Lisa West 

Trust your gut.

“My daughter was 4 months old when I felt a small lump where her liver is. I brought it up to her doctor, and he felt around and didn’t feel anything. So, he said if I feel it again to let him know. (I thought I was being paranoid.) A month later at her checkup, I expressed how I was concerned that she wasn’t gaining weight like my two older girls did at her age and she wasn’t reaching her gross motor milestones. He didn’t seem concerned, but he saw that I was not happy about his response. So he asked me if I wanted her to be admitted to the hospital for testing. I said yes, and she was admitted that day. It turns out she was malnourished because there was a giant tumor taking up almost all of her liver. She just finished round 4 of chemo and is going to have surgery next month. Trust your gut mamas! Who knows what would have happened if we didn’t catch it when we did.” -Super Mom Jamie Farfante 

Your opinion matters. 

“Lyla was 2 months old, still in the NICU. She was already short bowel syndrome due to Gastroschisis. She was working her way up in tube feeds and had just a day prior started to attempt nursing. She was only allowed to nurse a couple of times a day after I had pumped. First day nursing went great, second day started off great, but by that night my baby wasn’t acting herself. She wouldn’t latch and wasn’t happy. I knew something was wrong. The nurses just thought I was discouraged because Lyla wouldn’t latch, but I wanted a doctor to come check on her. The on-call doctor came and told me, ‘As long as she isn’t vomiting green stuff she is fine.’ I couldn’t shake the feeling and demanded an x ray. The doctor acted like I was overreacting. But they did the x ray. Within 5 minutes, Lyla was swarmed by nurses and doctors. Removing her NG and hooking her up to wall suction and drawing labs, running antibiotics. That same doctor came to me and said, `You saved Lyla’s life.’ Lyla had Necrotizing Enterocolitis. She ended up getting very sick and required another surgery to remove more bowel and place an ileostomy. Things could have been deadly if we didn’t catch it as early as we did.” -Super Mom Courtney Watkins 

Be persistent.

“When my TinySuperhero was four months old, he caught a cold and started gasping for breath. For two months I sought different doctors every week, only to be told that it was nothing to worry about. I had to keep pushing and trusting my intuition. It wasn’t until they started to worry about shunt malfunction that they finally became concerned about his breathing. Three weeks in the PICU and a brain surgery later… Now he breathes much better! I learned from that to push when I KNOW something is wrong.” -Super Mom Sean-Kait Saffold 

You know your child best. 

“When my son was nine months old, he was playing on the floor and I noticed that his head was moving side to side but it didn’t look like it was voluntary. (It was a very slight change.) I said something about it, but everyone just brushed it off… The next day his eyes would take spells of going round and round in circles, and that’s when I got really worried. I told my family and everyone that something just didn’t feel right, so the doctor agreed that it was odd and referred us to a pediatric eye doctor. He thought it was nothing serious, but I pushed. Then, just to make me feel better, he said that he would order an MRI… The night before the MRI, I called my mom crying because I knew something was wrong with my baby. Sure enough, after the scan, they pulled us aside in recovery and told us that he had an aggressive optic pathway glioma, and if we wouldn’t have caught it when we did and started treatment immediately, that he would have died.” – Super Mom Amanda Turner Smith  

There can be so much doubt, skepticism and negativity in this world that so many don’t understand, but just remember, you are a Super Mom. Your child would not be here without you. When that feeling of intuition creeps up, listen to it.

A Cape Full of Patches on Every Kid

The cape is just the beginning of the journey…

We asked 3,000 of our families if their children were part of an extracurricular activity or group…

80% said NO.

We asked them if they wanted to be…

98% said YES.

We knew we had to fix this.

So, as of January 2019, we launched the Patches Program!

Every month, our TinySuperheroes unlock a new superpower by completing a mission. For each mission that is completed, a new patch is earned for their cape, at no cost to the family!

Our original goal was to keep our Squad engaged, but what it has transformed into is so much more…

It builds confidence.

“It helps my daughter know that there are others out there like her. It gives us something fun to do together where we can talk about the importance of being true to ourselves and helps her to learn how special we all are in our own ways.” – Super Mom Jennifer

“The program helps give my kids the tools they need to navigate a childhood that is filled with scary things so that the wonder and amazement can fill their hearts.” – Super Mom Amanda

It builds friendships around the world.

“The patches program is important because it gives the children a sense of community. They know there is an entire group that loves and cares about them. It gives them an opportunity to be included and include the community around them. It allows them to make a difference and an impact on the world. My son and I still do the March Mission and leave drops of hope where we know it is needed.” – Super Mom Ziec

“My son loves getting the patches because to him it’s like a reward for completing something and he loves that people all over the world does the same thing as him. He likes seeing the different ways other kids do theirs and most importantly he loves that it’s something we do together kinda our thing and crafts are his favorite. He also made pen pals through this program and he loves getting mail and writing his favorite pen pal Hunter.” – Super Mom Amber

It strengthens family connections.

“It gives the kids a sense of accomplishment. My son looks forward to doing the missions, seeing how the other kids have done and of course getting something in the mail. I think it’s a good connection time between the kiddo and parent while doing them together. It opens up conversations that might be hard to open up without having this purpose. He seems to talk more freely while we’re doing the projects together. I think it connects him to the other TinySuperheroes knowing they are doing and dealing with the same things. So often he feels alone in his struggles.” – Super Mom Donna

“It’s encouraging, thoughtful and a true motivation. The missions bring together families for bonding time. It gives these TinySuperheroes something to look forward to and rewards them in the end. Something for them to be proud of and to have fun while doing. I think this whole program is AMAZING.” – Super Mom Patricia

It provides a way to educate and, hopefully, create change.

“It helps shine light on the MANY disabilities our littles have, and it allows us to bring awareness to the public as well.” -Super Mom Jenna

“It gives our TinySuperheroes the feeling of being part of something bigger than themselves.” – Super Mom Aub

Not to mention, it is just plain FUN.    

“It gives them a chance to escape the world we sometimes don’t understand. It gives us a chance to look paste all the medical. It gives us a reason to smile as we see their excitement. It gives them a sense of love outside of a world that doesn’t understand them but a group that does. It brings us parents a reason to feel like we aren’t failing them. A reason we can brag about our children when others don’t understand. Robyn thank you and your team for all you do!!!” -Super Mom Shelley

“It gives the child a chance to just be a kid and have fun, a break from the medical stuff :)” -Super Mom Marie

We were truly humbled by our Super Moms’ responses.

For us, seeing a cape full of patches means so much. It means that we actively take part in making a positive impact in our TinySuperheroes’ lives every month. It gives us a sense of pride, joy, and determination to make it even better.

Start your journey with us. We can’t wait to see your TinySuperhero grow. www.tinysuperheroes.com/patches

Happy Birthday!

Click here to download your certificate to print and put in your Toolbox:

Don’t have your toolbox?

To unlock your superpowers and make your toolbox, click here: https://tinysuperheroes.com/patches/

iCan Bike Camp

This week was the first time I’d ever heard of iCan Shine – a national organization that “provides quality learning opportunities in recreational activities for individuals with disabilities. By creating an environment where each person is empowered to maximize their individual abilities, everyone can shine!”

iCan Shine provides opportunities for kids all around the country to master recreational activities of their choice. They now have iCan Bike, iCan Swim and iCan Dance.

I am SO happy that I learned about this organization – it is AMAZING. And then, to make things even better, I learned about the Lydia Cox Memorial Foundation – another incredible organization that is here in St. Louis started by the family Lydia – an Extraordinary girl who from birth, used Down Syndrome to reveal her superpowers. Super Lydia passed away in October of 2009 at the age of 3 after a complication during heart surgery. Her legacy lives on through her foundation, and the Lydia Cox Memorial Foundation has used their funding to host an iCan Shine Bike Camp in St. Louis for the past 9 years.

Super Maria signed up for iCan Bike in St. Louis and was VERY hesitant to go. Even her new blue bike she was getting at camp wasn’t enough to convince her that this could be fun. She was scared, but she did it anyways.  I always tell our Squad that yes – even superheroes feel scared. It’s the courage to move beyond the fear that makes them superheroes. By the end of day 1, Super Maria was loving bike camp and making remarkable progress on her bike.

We were thrilled to join her by empowering the other participants on their last day of camp. The camp is just 5 days. At the beginning, none of the kids were independently riding their bikes on two wheels, and by the end everyone had either mastered it or were coming super close to riding a two wheel bike independently. It’s quite remarkable.

Super Maria was SO excited that the other campers were going to receive their capes today. When her mom came out to the living room this morning, Super Maria was ready to go in her TinySuperheroes Tee and Cape strapped on. 

Super Maria has the sweetest heart. I have the privilege of calling her a good friend as well as a member of our Squad, and seeing the way that her cape brings her courage is a daily reminder of the heart behind our Mission with TinySuperheroes.

The pride in her smile as we watched her ride her bike today is probably why the amazing volunteers who run these camps keep going…it’s unbeatable.

I encourage you to check out iCan Shine and see what programs are available in your area! It was an amazing experience to even get a small taste of their Mission today. You can find locations of their programs her

Meet the Crew: Terri

Terri is a sewing phenomenon… Seriously. One time we gave her over 100 letters to sew onto capes… and I swear she finished in like an hour! It is truly an honor to have Terri as our seamstress here at TinySuperheroes HQ. Terri is responsible for personalizing all of the superhero capes. So, if your cape has a letter on it, Terri personally cut the letter, placed it on the cape and sewed it! She was even the one to wrap it all up in the tissue paper, put a sticker on it, package it up, and print the label with your name and address on it!

Not only is Terri lightning-quick, but her work is absolutely beautiful.

When Terri started working for TinySuperheroes two and a half years ago, she was helping Robyn by sewing 20-30 capes per month. Now, Terri is sewing more than 400 per month!

What a wonderful lady. But she doesn’t stop there!  

Terri was an OR nurse in pediatric hospitals for 30 years.

“I began my nursing career as a student at Deaconess School of Nursing and continued to work there after graduation. From there I went to work at Shriners Hospital for Children for over 6 years as an OR nurse. I left Shriners and started in the operating room at St. Louis Children’s Hospital. I stayed there for 24 years. The decision to leave was not easy. I loved working with and for the children. Now, at TinySuperheroes I can continue to work for the children, but just in a different setting!”

It is obvious that Terri is an incredibly caring, thoughtful and selfless person.When she isn’t sewing capes, you can find her gardening, practicing her faith or spending time with her family.

“I have been married to my wonderful husband for 28 years, and we have 4 awesome children. As they move out and develop their own careers and families, we are amazed at how quickly they have grown!”

When asked, she will tell you her superpower is the ability to hyper-focus on an activity which makes her a task-master! But top secret information from HQ will tell you that her kryptonite is chocolate and all forms of carbs!

Make sure to share your campaign so you can not only help 3 other TinySuperhereos get their capes, but also so you can get your cape personalized by a truly amazing person!

Hey guys! It‘s Super Robyn here and I’m on a special birthday Mission!

I am on the TinySuperheroes Squad (which is very awesome) and every month we have the opportunity to earn a new Patch for our capes!

For my birthday this year, I want to raise money for our Patches Program so that even more kids can earn Patches, too!

Can you help? Every dollar matters when it comes to making my TinySuperhero friends feel Extraordinary!