People always amaze me.
As Super Samurai has grown older, there has been a community of special needs professionals, volunteers, and parents who have rallied around him to make his life as normal as possible, in a world that sees him as anything but normal.
It was the health officials in California and the current school district in Illinois that renewed my faith in to humanity as a whole.
As he finally had his Functional Hemispherectomy(splitting his brain into two pieces) to stop his seizures. They got him settled into his weeks stay. It was a long road ahead, but he was determined to get to it, because it was his personality to do so.
His team of nurses treated him as if he was their son. He would be in pain, and they soothed him back to a comfy place, when I we didn’t know what to do. They encouraged him when he was frustrated being in a diaper, until he was toilet trained, and was his biggest cheerleaders has he relearn his speech and how to walk.
It was his birthday, when I truly knew, these people were more than invested. They had grown to love him just we did, because he is this loveable kid!
As I woke on his birthday, we had enough money to buy him a DS, and that’s it. I felt so sad, but grateful for being at this point. His main nurse Amy* walked in with a huge grin. We were on day 6 in the hospital. He had 3 more days left.
“Brandon! Cutie Pie! How we doing?”
“Ok and itchy. Need a bath”.
Now, my son is brutally honest. He also loves the ladies, always have, even before his disability. He knew, if he mentioned a bath, it was sponge bath, and a whole body lotion massage. I grinned at him and shook my head.
“Of course little man, it’s your birthday! You gotta look good right?”
“I do. Mina-mom mom(me) say I cute”.
Again, brutally honest.
He laughed, and she motioned for me to go outside. It was her and about nine other nurses.
“Well, we knew it was his birthday, and thought it sucks being in here for it. We pulled together our resources, along with the hospital, and got him a gift, and some decorations with a cake to celebrate. Do you mind helping us decorate?”
I wanted to cry. I mean they weren’t obligated to do it, but they did it anyways. I grinned like a kid on christmas day, and we were off. He was confused but happy. He didn’t know what was happening until the end when his dad came with his sisters to room. He was smelling fresh, and ready to go. He had his cake, ice cream, his DS he got, and his huge remote truck they got for him. One of the best birthdays he had.
We come 6 years later, to our school district. We are tight on money for special things for him. Like special shoes to fit over his brace on his foot, and other things. I do the best I can by buying shoes that are a little bigger than they should be and hope for the best. The staff at this high school has embraced him like his own since we moved here.
One day, I get a call from his school, and of course I get nervous, thinking something happened, or he’s got a miagrane. It his teacher, and she’s sounds happy, so that debunked my fears.
“We were calling to ask you if we could give him a pair of tennis shoes from his history teacher. We were just worried about his other shoes since they were a little too big”.
“Oh that’s fine, I tried to get speciality shoes, but at 200 dollars I couldn’t do it. Not with three kids”
“Oh no! Ok! We are sending him home on him today. Please, if you ever need anything, please call us. Remember yu aren’t alone in this journey with him. We got your and his back. He’s got a great future, and we all know it”.
Tennis shoes. A small but big gesture. Rearranging his drop offs and pick ups for the bus since the snow and ice scare him. Taking two aides to try to see if he can try skating on his field trip. Giving him a shopping spree for Christmas.
I could go on and on, but this district has gone above and beyond for him to make him feel normal on the outside. These people didn’t have to do these things. They could do the bare minimum, but they choose to do more. Even if it’s costly to them, it’s not about the cost. It’s not the glory. It’s the smile you see on Super Samurai’s face. You feel his naivety, love, appreciation, and just awesomeness through it all.
It’s that, to me, renewed my faith in humanity, and let us know, compassion is there. It’s hiding, but slowly making a comeback.