I also know that my daughter is absolutely a superhero. I believe she has saved me many many times over. I know that I would think my child was special no matter what her health status. But because of/despite/along with her medical issues comes a tremendous joy that her body seems, at times, incapable of containing, an unspeakable bravery, a solemn understanding, a drive to live, and a need to connect that is all beyond heroic.
— Super Esmé’s Mom
Today begins Feeding Tube Awareness Week – a particularly special week for TinySuperheroes since 5 out of 6 of our first featured TinySuperheroes rely on their feeding tube for nourishment. And as we now introduce you to Super Esmé, we have a sixth Tubie TinySuperhero! Super Esmé is the perfect advocate for Feeding Tube Awareness Week, and we’re so happy to feature her as our newest Extraordinary TinySuperhero!
Esmé was born with The Cute Syndrome. Ok, so The Cute Syndrome isn’t actually an official medical diagnosis, but it indeed perfectly describes the symptoms of Esmé’s undiagnosed genetic condition.
At their 20 week ultrasound, Esmé’s parents received the news that their perfect baby seemed to have a genetic disorder; however, the doctors weren’t sure of the nature of her condition. Fast forward two years, and the doctors still aren’t sure. Esmé was born full term, but stayed in the NICU for one week because she wasn’t feeding well and had low muscle tone. Esmé went home, but problems arose quickly, and at just 3 1/2 months old, Esmé went into respiratory failure followed by respiratory and cardiac arrest.
Life, since defying death in the ER that day, has been anything but “normal” for Esmé’s family. Her genetic condition is still undiagnosed (The Cute Syndrome), which also means they have no prognosis or idea of what the future holds. Esmé is also fighting severe hypotonia (low muscle tone), developmental delay, severe GERD, feeding difficulties, a minor heart abnormality, and epilepsy. Esmé just celebrated her second birthday, but due to the extremely low muscle tone, she cannot support herself in a sitting position for very long. She is also non-verbal.
What all of these medical diagnosis (or lack there of) haven’t addressed; however, is Esmé’s super powers. She has several, but the one she shares publicly is her ability to bring a smile to even the rudest onlooker with her positive spirit. Through tests, procedures, vomiting, hospital stays, and seizures, Esmé’s smile is never far away. She may not crawl, walk, sit, or talk…but Esmé smiles and laughs all the time, and causes everyone around her to do the same! It’s as if she knows more than us – as if she understands that indeed she is exactly who she is meant to be. Esmé has done an amazing job at teaching her parents, doctors, and now us, the balance of keeping her safe and healthy, while letting Esmé be Esmé:
Now, it may be the result of having watched every inch of my child’s body being measured, evaluated and analyzed, but, meanwhile, it seems that in trying to figure out whether a child will exceed milestones or not, we forget to just let them be who they are. Watch them, hear them…let them teach us a little bit. And if they are a little behind their peers in one thing or another…it will be ok. Really. I don’t have much of a choice with my child, because if I tracked such things I would be a blubbering mess…but it is as true for Ezzy as for any other child: They need to just be allowed to be who they are.
— Super Esmé’s Mom
So, why is Super Esmé the perfect TinySuperhero to advocate during Feeding Tube Awareness Week (other than the fact that she’s nourished through a G Tube)? Esmé is proof that miracles do happen. She has flabbergasted doctors with her strength, progress, and survival. (She is even anxiously awaiting the arrival of a Gait Trainer so that she can be more mobile, and has been practicing on “The Pony”, zipping all over the house!) Without a Feeding Tube, Esmé would not survive, and trust me, our world needs Super Esmé! She has empowered her own mother to be an advocate for her and for children like her, who rely on Feeding Tubes in order to serve our world as a TinySuperhero. Esmé’s smile represents hundreds of thousands of other children who rely on Feeding Tubes to survive, including our very own Super Brenna, Super Isaac, Super Case, Super Elijah, and Super Ireland!