(Shout out to Sylvester Stallone and whoever wrote the Rocky Movies: please don’t sue me)
We all do it. We name our child, our pet, our plant (no judgement here), and immediately think of ways to shorten it or revise it to fit our mood at any given time. Or their mood. Do plants have moods? *shrug*
Everyone had nicknames for my boy: Mellow Yellow (see earlier post about jaundice), Moo Shoo, Sweet Pea, Scooter, Little Biscuit, Rollin’ Coconut and so many more. But my favorite, my all time favorite, of the nicknames bestowed upon the OHT was the one my Mom gave him. She dubbed him Noah Balboa during his first summer on the planet. I’m sure the first impulse was the rhyming thing, but man, it quickly became obvious that it fit him perfectly.
Noah had to fight from the beginning. He had jaundice and a high fever days after he was born. He was diagnosed with schizencephaly and given the prognosis of: might never walk, talk, read, write, sing, dance, might have life-ending seizures. He was born with a brain that struggled to communicate to his body what he wanted it to do. He was born with an immune system that would fail him, over and over again. However, thankfully, he was also born with a will so strong that he blew through all the stereotypes, the prognoses, the diagnoses and he lived and did exactly what he wanted. Until he couldn’t.
He, with the help of an equally strong-willed preschool teacher, taught himself to read. And read voraciously. He, with the help of physical and occupational therapists equally as strong-willed, walked, ran, danced, climbed, slid, rode a bike AND a horse, wrote, fed and clothed himself, and made his body do what he wanted it to do. He, with the help of speech therapists equally as strong-willed, spoke, sang, and was able to let his sarcastic soul fly free with his words. When I would hover, worried, watching, waiting to catch him should he fall, he would simply turn to me, lay a gentle hand on mine and say, “Mom. I do it MYSELF”. What could I do? I backed up, blocked and fought the Others who tried to make it easier for him, who disappointed us daily with their efforts to set the bar lower for him because it was harder, and let him do it HIMSELF.
And he did. He fought hard, every day, to do the things he wanted to do. Everything was harder for him, much harder, but he did it. Everything took longer, but he didn’t care. He figured it out. When he got sick, and when he got sick he got really sick, he fought, and he came back. His fevers ran in the 104-105 range. His colds nearly always led to an infection of some sort. He never got a “mild” stomach bug. He never got the 12 or 24 hour bug, his lasted longer. And when epilepsy hit, it wasn’t a seizure here and there. It was hundreds, of all kinds, all day, every day. And yet, he fought. He rallied, he did what the doctors told him to do, and he fought to do the things he wanted to do. The list of things got shorter as epilepsy wreaked havoc on his physical systems, but he adjusted, and he continued to fight. Until he couldn’t. And, only after he understood that I would be OK, did he sweetly, gently, simply, stop fighting and let go.
Noah Balboa. Best, most accurate nickname I have ever seen or felt in my soul. Thanks, Mom. ZZ