The story of Ethan
Edee has a neurological congenital rare disease which he developed in utero. I since lost track of how many appointments he has had after he was diagnosed – a diagnosis that took three years to get.
I lost track of all the imaging and all the different test he had and is still going through, and I wish for the day his doctor says he’s fine, no more appointments. But that’s a wish that cannot be granted. One little piece of his body was not properly put together, and now he will have a lifetime full of chronic conditions. Yet, to this day he never has once complained. All the appointments, tests, surgeries, and even the severe pain that no child should ever have to go through – he has always taken it like a trooper, like a superhero.
He can’t run or walk like his friends, he has to do things a bit differently in school, and he deals with pain that never negotiates, and still he never lets any of it bother him.
He amazes me. His courage is undeniable. He reminds me every day that there is good in what I always see as dreary.
When an appointment is just another day at the office for him, I can’t help being amazed at how conditioned he is to all this. He goes to MRIs like it’s running an errand because he’s so used to them, for him it’s no big deal.
He is remarkable.
The journey has been long, aching, and still years and tears to go. He has had five surgeries since 2011 and his body is reminded of chronic pain every day. Some days are set backs, but those are always counter by the positivity he radiates.