I used to use that cutesy little title “Noah In a Nutshell” to create the how-to sheet for caregivers, his camp counselors, his school team, and even the Others. It was a summary that got longer and longer every year, and every month and even week as his medical decline started to speed up and rage out of control. Its purpose was to outline the basics of his medical and overall care. I tried to keep it positive, and I tried to insert his likes, dislikes, abilities and deficits so that people would actually see the true spirit under all the observable and physical damage that his body carried. I tried to keep it full of gratitude for those taking care of him. But no one knew, until just now, how hard it was for me to do that, how frustrated and cranky I got that I needed to add certain things for some readers so they wouldn’t get over looked (like, he loves to read, please help him hold the book) due to the predetermined stereotyped thinking that comes with a person who had such limitations.
Sorry, that’s a post for another day. Today I promised to introduce you to the star of this show. Self-dubbed at age four as “Orange-Haired”, because his thinking, sort of like his mother’s, was very linear and concrete. The hair on his head was NOT red, it was ORANGE, MOTHER. ORANGE. And who could fault that logic? He wasn’t wrong. So I went with it. My Orange-Haired baby was born with “difficulties” right out of the gate. It started with severe jaundice. That meant he was tethered to a machine with a light pad strapped to his back for days on end, making him glow like that toy the Glow-Worm. My family immediately dubbed him Mellow Yellow–thankfully, we use humor, research, science and data to make an overwhelming situation manageable. And it went from there.
Craniosynostosis was next, the skull suture on top of his head–the sagittal one, if you are sciency like us– was fused completely shut. Which led to surgery at age 10 weeks. The surgery was simply the gateway diagnosis for the next few heavy hitters–schizencephaly, hypotinic cerebral palsy, cyclic neutropenia and finally, the one that led to the end, Lennox-Gastaut Syndrome. Severe epilepsy that eventually stole his walk, his talk, his read, his write, his eat, his sleep, his independence, his health, and finally, his life.
There were other diagnoses that were tried and discarded along the medical pathway–cystic fibrosis, asthma, aplastic anemia, William’s Syndrome, all scary and involving a lot of “test–wait–result”. The anxiety of that process still haunts me. Because those are heavy hitters. Not that his little cocktail of diagnoses wasn’t heavy and scary, but until the last year, my private nickname for him was “LittleBitOf”. Because of all the diagnoses he had, he just had mild forms, a little bit of them. Until LGS.
I don’t want to end on a scary, dark note. Because his life, and my life as a result, was absolutely not dark. Not ever, not even a little bit. Because that Orange-Haired Boy was an ancient soul, filled with joy and laughter, love and light that burst out of him and showered over all of his people. Whether you met him once or were a part of our lives, you were his people. He was sarcastic, so sarcastic that it warms my heart even remembering it, knocking you flat over with a side-eye and a smirk that continues to live on in pictures. He was so authentic, and he saw you. He really saw you, to the point that some couldn’t handle it and tried to shove him into a stereotypical box that just didn’t fit. And he knew when they were doing it, and yet, he held no malice. He never fought the inaccuracy. As a matter of fact, he would give grace to those people, he would not treat them any differently, and he would dismiss them so gently and sweetly that they never even knew it. But I did. And it lightened my load ever so much. It lightened the significance of “Noah In a Nuthshell” which made it easier to write and revise. I sometimes wonder if that’s one of the reasons the Universe gave that boy to me, to lighten my load and teach me that there’s no need to fight against falseness. Simply give grace, be gentle, and dismiss it gently and sweetly. Just like he did. And someday, I hope it will be as easy for me to do as it was for him.
