(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.
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.
3 comments:
You're awesome! I just want to give you a great big hug!!! Miss you! Thanks for the bday wishes...I totally missed yours...sorry!!! Hope all is well! Jess
Lyssa, I appreciated the last two posts. You are an incredible example! Thanks for sharing your perspectives and struggles. I can learn a lot from them. And I think that your writing is amazing.
I just say a big "me, too." I tried your "story" trick the other day, and though I still had to sing him a few songs to get him to sleep at mom's house, he was down in 15 minutes which is a total record. Sure glad he has an aunt who loves him like you do.
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