Two years and a half years goes by…

Talk about procrastination! Two and a half years ago I attempted to write frequently and to share the wild ride we call life with our almost teenage son who has cerebral palsy (non-verbal and non-ambulatory). A little background…He came into this world without a breath. It took twelve minutes for him to take his first breath. I don’t know if that essentially means he was born dead, and came to life, or what? It always strikes me as odd. He fought crazy odds and left the hospital with a g-tube (still has it), weighing over ten pounds, and a lot of uncertainty. We welcomed him home with lots of love, determination and the desire to give him the best life. He’s been through surgeries, lots of therapies, and more doctor’s appointments than most people have in a long lifetime. He handles it with grace (usually).

He’s been part of inclusive education since he was a year old, and is now going into 7th grade. He’s on honor roll most school years and spent the last year getting to know Tobii, an eye gaze speech output device. He’s happy to use it at school, but still prefers to use the language we have developed over the years of him smiling, frowning, occasionally uttering words, and us mostly guessing…I think it amuses him, until it doesn’t, and it’s tiring to use Tobii all of the time, especially after long school days. He’ll get there. He uses a gait trainer at school too, and prefers to play baseball on his feet, with adult support. We were told he’d never walk but he runs with help, or in his gait trainer…and dances! HE LOVES DANCING.

Because he’s always known inclusion, and has never been segregated because of his disabilities, he doesn’t really identify with kids who are similarly abled to him. You have to like the things he likes or something that interests him to learn about. He surfs, skis, plays baseball and is now interested in volleyball (the girls are playing at school so there’s motivation to play). He loves music, swimming, dancing, and cooking. He eats very little by mouth, and decided some time ago that he’s a vegetarian, though he’ll nibble on sushi. He finds comfort watching old Nick shows that he loved when he was little (Little Bill, Blues Clues) but he also loves Ellen, Dog with a Blog and About A Boy. He’s like that with music too…He’ll listen to Weezer and Coldplay and One Republic, but then when he’s feeling tired or anxious, he wants things he loved when he was small like Ralph’s World and They Might Be Giants. His brain is a curious place.

He likes to travel and is desperate to see Paris. I’m not sure why exactly but it may be my influence as it’s one of my favorite cities. I came back to this today because we’re gearing up for the family summer road trip. We’re visiting the Grand Canyon, first time for all three of us, at the end of July, and are taking the long way there with a couple of days in Las Vegas…We’ve heard the Lazy River is a must do for kids so we thought why not. Brights Lights and then one of the most magnificent sights in nature…a great contrast in just a few days! Travel with the boy is always interesting. We’ve grown pretty adept at making just about anything work.

We might do things differently but we’ve really never not done something we really wanted to do. I’ll never put him a position of not trying to make something work. I’ll never short change him of an adventure or experience if he’s passionate about it.

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