Changes

(Disclaimer: I’m single and pretty darn self centered, but I’ll blame it on the footloose and fancy free and cross my fingers and hope it’s not a more permanent character flaw. I reread my own entries on this blog and sigh. I’m working on it I promise. I wanna be a real girl and someday I’ll change from wood to a grown up.)

I’m so excited for Kristen, Adam, & Connor. Connor got his first electric wheelchair this week. It was a kind of telescoping seat that leans forward and can get just a few inches off the ground. This is close enough that Connor can crawl onto the seat and then return to the normal position and take off! From all reports he’s a speed demon. J

I was considering the other day how my perceptions have changed since Connor’s diagnosis. I was reading my cousin Carrie’s description of something similar and then Kristen’s too, and I though I’d add my two cheap cents. I catch myself noticing someone in a chair and I look at the brand name. What started last year as, to be blunt, ‘Smile uncomfortably because you just got caught potentially staring’ is now a heck of a lot more natural. I catch myself smiling and am much better at actually saying hello. I was walking next to a really cute little girl this spring that had a ‘Jazzy brand’ chair that was electric purple. It just so happened that it’s a favorite color of mine, we struck up a conversation, and I just so happened to have the matching nail polish in my purse. So before last year I likely wouldn’t have struck up a conversation, but this year she zoomed away with a new bottle of nail polish. ‘Cause as we discussed, ‘a girl’s toes should always match her chair’, lol.

In the last year or so I’ve read up on all kinds of random things like actual helper monkeys, handicapped horseback riding, and the guide dog etiquette. (This was new information for me: don’t commonly approach a guide dog and pet them or ask if they can be petted. When they’re in harness they’re ‘on the clock’ and know that they need to be alert, attentive, and working. Strangers petting them can be confusing as this is a ‘fun time’ activity and not a ‘working time’ activity.) I’ve been working on my attitude (I worry about us loosing him). I know I’ll always be on the periphery of Connor’s life and not the main stage, but I never want my thinking to get in his way. I want him to know that he can do anything! He can be anything! Maybe the order of operations might not be the same as you or I do something, but that just means he gets to be creative like it’s goin’ out of style.

Wow, do I love that kid. I discovered a new skill this month. If I tell him a long enough, boring enough story AND tell him I won’t keep telling the story unless his eyes are closed, he falls asleep for me. I’m covertly campaigning to give Jenna a run for her money for the title of “Most Useful Aunt”. I’d love to make the world sit down, roll over, and beg to make him happy. Since, however, that would make for a rather spoiled ‘almost three year old’, I’ll go with just getting out of his way and improving my jogging skills to keep up with him. I think it’s either that, or be mowed down. He’s already noticed that I make fun squawking noises when he runs into me with his manual mobile stander, I can only imagine what will happen now with something with some actual horsepower.

Pathfinding

In an exchange between his secretary and Brigham Young, the young man asked Pres. Young why God wasn't constantly at our side promoting universal happiness and easing the path of those that choose to obey his commandments. Essentially why when we're doing as we feel we should does life continue to be difficult. The answer: "Because man is destined to be a God, and he must be able to demonstrate that he is for God and to develop his own resources so that he can act independently and yet humbly." Then he added, "It is the way it is because we must learn to be righteous in the dark." (President's Office Journal, 28 January 1857, Brigham Young Papers)

I read this the other day and rolled that phrase around in my head for days. Learn to be righteous in the dark. When you're alone, when no one is watching, who do you choose to be? When circumstance presses and when opportunity begs, who will you be? When you're sure of what you want, but you're sure... it's not what you need, what leashes your desires? "Bridle your passions" was always a very visual phrase to me. Religiously, I always imagined I was more the horse with the bit between her teeth, taking the jump with or without my riders urging, unsure just who was riding whom. We just seemed to be going in the same direction for a while so there was no need to define the relationship. Somewhere back there in my history, I chose to be counted as I am. I'm an active participant, but I hold back, determined to stand on my own feet. To hold myself stiff, to give no quarter to the reflex to relax my guard, to not lean into the comfort that I crave. I tell myself it's because I don't trust it, but I lie. More frequently than I'd like, I find myself clinging to my faith by my fingertips and they're white tipped and shaking from the strain, BUT I KNOW IT'S BY MY OWN CHOICE.

So often I find myself asking for the desire to want to be the person I think I should be. Blame tangential thinking, but I've always loved wolf stories, to be just what instinct drives you to be. To forget reason, to be so sure, without equivocation. I wish I was that instinct driven but instead of warmth/food/breath, I long for a knee-jerk goodness, a willingness to give all, and to simply know like it was muscle memory. What to say, what to do...

To be righteous in the dark, to walk a path led by inspiration, to be oh so sure that there is solid stone beneath your feet, that while you can't see in the pitch black, you trust your guide has the vantage point to keep you safe and whole. I was listening to a friend talk about their view on 'faith' a while ago and I diagrammed my response in my head, what I'd wished I could say if he wasn't boozy and quixotically determined to sway me, if it weren't 2 am, and we weren't in a crowd. It'd have told him, "No, I believe because it keeps me alive. If this life were all there were, if there was nothing better, I'd rather have died at 14. The two proceeding years in my life would have gutted me and left me hollow without it. While that may smack of blind faith to you, it's not now and it wasn't then. I wasn't left alone to do it by myself. When I was doggedly getting lost, feeling like I was 90' miles from nowhere, just where I'd put myself, there were signposts. Sometimes they came in the form of people, sometimes answers to prayer I abso-freaking-lutely had to have, and sometimes statistically implausible events that dropped me, loose limbed and amazed, in a heap back smack in the middle of the path I'd lost. Something saved me again and again 'cause there was no way I was saving myself. No matter what I do in my life, no matter what stupid mistakes ---and potentially idiotic choices --- I make. I cannot ever say anything other than there is a God, he knows me, he watches, he listens, and good grief he's trying his best to bring me home."

Kayaking...Again....Again

I went kayaking on the 3rd to kick off my holiday weekend and loved it as usual...but! I've never ended up in the water so much. I was with the same group of friends that go every year and I don't know what the heck happened, but canoes were swamped 5 times in 7 miles. First one, totally poor planning, two tallest guys, the heaviest cooler and what does that spell? A swamped canoe 60 feet from the dock at the beggining of the trip. 2nd one? same two guys...3rd one? same two guys in rapids...at which point I gave up my kayak to the guy of the pair I thought was the likely 'canoe swamping culprit'....lol, wrong. 4th one? the girls swamped their in the same rapids. 5th one? Me and 6'3" guy who likes to talk with his hands. Ah, so we have a winner! It was really fun and I needed to cool off anyway. I was sad to loose my sunglasses, but he lost his perscription glasses so I didn't think I could really complain. I wish I lived on/in/by/adjacent to that river. My first major of three was recreation management if that tells you just how much I love this kind of thing, but since I would potentially have graduated with a degree and have been gainfully employed as a river guide at $10/hr for the forseeable future I decided to try something else. It still sounds like a fun life though. :)