“‘I ask not for a lighter burden, but for broader shoulders.”- Jewish Proverb
In everyone’s life hopefully there are people that motivate and inspire them. I refer to these people as touch stones. A touch stone is actually an assayer’s tool for identifying precious metals. I use the term as a way of identifying precious people.
One of my touch stones is a little girl named Mariella. She was born with a very scary medical condition. I have the good fortune of calling Mariella’s Mom my friend. About six years ago, Kathy introduced me to this special little girl. The world knows her as Mariella. I know her as my Princess.
At only seven years old, the Princess has seen more of the world than most. Unfortunately many of those travels have been to some of the finest medical facilities in America. Mariella was born with a condition known as Ectodermal Dysplasias (ED). E.D. is a condition that causes the bones in her tiny skull to fuse instead of expanding as she grows. As her brain grows it pushes against her skull which cannot expand to meet that growth. The condition is very rare as are some of the other “less” threatening symptoms that are also part of the mix.
As I said earlier, Mariella has been tested in some of the finest medical facilities known to man. World renowned specialists at medical centers like Stanford University have tested her looking for answers to what causes her to suffer from this condition. Each time they have come back with only bits and pieces of a diagnosis. As rare as a disease like as Ectodermal Dysplasias is, Mariella’s version of it is even rarer and the continued fusing of her skull has required multiple surgeries to her head and face.
Through it all, my friend Kathy has been strong. She has kept it together as a single mom and has employed every option despite the costs or time commitment. People are sometimes described as being a “rock”. In this case, the woman has been chiseled from granite.
There is a saying about apples falling and trees and in this case the child is obviously her Mothers daughter; a mother of pride and dignity pushing through adversity and refusing to fail. This Mothers spirit permeates the child and that has shaped Mariella into one my touch stones. I hope to try and emulate her spirit and to live as she does; Fearless, engaged and enthusiastic.
Fearless to the point of being scary at times, she is unafraid of new places. She is unencumbered with the fear of striking out on her own. This child is an adventurous soul who has seen some of the worst that life has to offer and has come out unafraid to approach life on her terms.
Engaged and completely open to new people, she is always welcoming of strangers who quickly become her friends. Even those people who are at first distracted by her appearance soon only see the beauty of her soul.
Enthusiastic….The child is a fire ball. When others might hide in a corner, she is the typical seven year old. Dancing, singing and jumping as you would expect a child her age to do. Feeling bad? No problem. In pain from surgery? No problem. She does not let those “little” things deprive her of living life as she wants to live it.
So as I look at this child what do I see? Challenges? Yes. Obvious differences? You Bet.
But I also see a person that is overcoming obstacles and is not letting excuses get in her way. She reminds me to be fearless. She reminds me to stay engaged. She reminds me that the enthusiasm that you put into life and into relationships comes back ten fold. She reminds me to smile. She reminds me to live.
Thank you Princess.
“Pain is inevitable. Suffering is optional.”- M. Kathleen Casey
