One of the things I can say that I could not have understood as I came to terms with the different parenting path we would be on was the tremendous people I would have the opportunity to meet along the way…one perfect example is Robyn Rosenberger.
Several months back I sent an email to Robyn about her new organization, TinySuperheroes, to nominate Esmé to be given a superhero cape and featured on their new website. I wrote to Robyn late at night during one of Esmé’s bad clusters of seizures–one of those nights where my hubby and I take shifts on “seizure watch.” As I watched over my sleeping girl I wrote about her unending positive spirit, her ability to make friends wherever she goes, her ability to defy odds, and her bravery…I heard back within a half hour.
Robyn said: “It is so wonderful to hear from you. There’s no doubt the Esmé is a TinySuperhero and I’m so thankful that you introduced us to her! I really do hope that our TinySuperheroes blog can reach more families like yours – to encourage you to press on. And I really hope that this blog reaches more families like mine – who take everyday for granted. I truly believe that kids like Esmé were sent here to teach everyone around them. She (and you) have already taught me, so thank you.”
I remember feeling so validated to know that someone else, someone who wasn’t a relative or friend or member of her medical team, could see how amazing my daughter is. And throughout the process of receiving our cape, writing up Esmé’s story, and seeing her on the blog, I just felt so proud. You can read my original post on it here. And you can read the original post about Super Esmé here.
We have continued our relationship with TinySuperheroes when we sponsored a cape for Super Jacob from Special and Determined for a celebration of our 10,000th pageview. We just really believe that in the highly medicalized world that kids like Esmé live in a bit magic is necessary…TinySuperheroes is a provides that magic…and we love them for it.
So, recently Robyn and I got to talking and decided that The Cute Syndrome needed its own troop of TinySuperheroes, and so The TinySuperhero CUTE Troop was born. Robyn and I want to honor the very special little girls battling against PCDH19 Female Limited Epilepsy and their friends who help The Cute Syndrome.
Check out our special page on TCS here. Keep an eye out as we bring you some of the TinySuperheroes who make The Cute Syndrome what it is…and make the world a little bit brighter.
Here’s to magic, superheroes, and CUTE!
