Ryan’s routine is fairly consistent. He works hard all morning on his therapies. In the afternoon he gets down time. This is an hour or two when the shades are drawn and I quiet the house. Actually, as far as I’m concerned, this is part of his therapies. It’s time to rest. He was always a fan of the afternoon nap and I love that this is built into his routine. I take advantage of this time to do research, clean, and handle any other matters. For both of us, it is a valuable part of the day.
So, imagine my surprise when I see the IBRF team walking down the sidewalk to the patio! Was it possible I completely forgot they were coming yesterday? That’s not like me to not be on top of such things. I took a quick glance at the rather large whiteboard we have where I jot down appointments (and a hundred other things too). I’m showing they are coming two days later on Wednesday.
Even before they get to the door — a matter of seconds — I’m trying to figure out what day it is. It wouldn’t be the first time I thought it was a Monday and it wound up being another day. That’s what happens when you live in the moment. I quickly draw on my best frame of reference… the NFL. During the football season I use it to mark time and reset my mental weekly calendar.
As they come in the house they can see I’m clearly not expecting them. Neither was Sue. She was in New York City on business.
Turns out the mix up was at their end.
It didn’t matter, they were here and I wanted to go forward with the assessment. My only concern was that Ryan would be thrown off his schedule. Even more, he will likely be sleepy since he has come to expect a break at that time. I’m immediately concerned that he will not perform well.
I won’t know for a few weeks, but I think Ryan did a nice job. In fact, the neurologist actually said “I’ve convinced myself that Ryan is voluntarily responding, at least occasionally, on command”.
I’m sure I looked silly picking my jaw up off the floor.
My wife, Sue, wouldn’t be surprised to hear this. She’s been telling me Ryan is “more with it” lately. Let’s not forget the Dallas Face video, she would remind me. To her, not only was Ryan vocalizing, but he was making a disgusted facial reaction.
As for me, I wasn’t convinced. Even with the neurologist saying so, I’m still not entirely. What I am is encouraged that it might be happening. The possibility is there! Then, like so many times before, it was my daughter, Kari, that brought clarity in a text message. I’m telling you, she has a “high-speed” mind. I’ve told her this for years. She hears something and is immediately five steps ahead in analyzing it. When she tells me something I know better than not to listen to her. Her intuition is something to behold. I’ll use yesterday’s text message to show you this. She nailed it in a matter of seconds, where it would have taken me hours:
Me: IBRF was here. The neurologist said that he has convinced himself that Ryan is voluntarily responding to commands!
Me: That’s encouraging news!
And then the one statement that made it all real to me because it is so true.
Kari: That’s bold… so that means he must truly believe it. Doctors never say that stuff.
Bam! Done… and done again! Such wisdom…
I was flattered that the neurologist also took notice of Ryan’s muscle mass and tone. He asked me, flat-out, what I do to keep to him this flexible. I simply tell him that I work with him non-stop. That so many caring people have brought him this far by providing for his treatment, health, and comfort. He further compliments me (us) on his health; the condition of his skin, nail, and hair. It makes me feel proud that, through me, we are all doing right by my son. Hey, I know we all are, but it’s always nice when other people notice. Still, it is Ryan who does the work and I quickly deflect the praise to him (I hope you don’t mind).
All the while, I ‘m watching the female technician who is running the qEEG. She’s not aware I’m doing it. I can see that she admires my son. That genuine look is easy spot. Then she confirms it by leaning over a giving him a hug, pressing her cheek against him. It’s almost magical how Ryan’s essence reaches out and touches good people like that. A mystical connection. It happens far too often to not recognize it as his powerful presence taking control of the room… like it always has.
Some things never change.
A Goodie to Leave You With
I added a Store to Ryan’s Rally. Although 100% functional (I hope), for now it’s in a very rudimentary form as I check all the components and prepare to take Ryan’s Rally LLC to the next level. One specific product, Hello, Ryan!, a song written and composed by artist Tim Williamson for Ryan is worth taking a listen. It’s available for sale as an mp3 download if you want to put it in your music library, but you can listen to it for free (as often as you want) in the store.