Dear family and friends,
Up and down. Up and down.
Grayson was perceptively more verbal today. By that I mean I could understand his words and his voice was stronger and slightly clearer. Danielle wrote in her notes that Grayson was able to do several fill-in-the-blank sentences with her today.
With this greater responsiveness comes the attendant fidgetiness, inability to stay seated (even at meals), and repeatedly getting out of bed (regardless of the late hour).
There always seems to be a flipside to everything, doesn't there? The challenge is to understand that it is part of the natural order and can't be changed. When we stop fighting or wishing things that can't be changed were different, we embrace, adjust, and strengthen ourselves. Easy? No. Worth it? Absolutely!
Keep getting stronger.
Regina
Dear family and friends,
This evening I was fortunate to attend the grand opening of the new John McKay Center at USC. This spectacular center will provide state-of-the-art athletic training and academic facilities for the student-athletes of USC's 21 sports.
When I picked up Grayson from my sister and brother-in-law's home afterward, I told Grayson about my evening and where I had been. As usual, after telling him something I wait a few minutes and then ask him a couple of questions to test and stretch his memory. I asked him where I had been. He answered, "Pete's place". I wasn't sure I heard him correctly so I asked him again. "Pete's place." I laughed so hard. Pete Carroll was USC's head football coach during Grayson's years attending USC. Brant would jokingly refer to USC as "Pete's place" and Pete Carroll was still head coach when Grayson sustained his injury in 2009.
Grayson's answer used his short term memory in accurately recalling that I had spent the evening at USC. His long term memory, however, still thinks that Pete coaches football there. (Some of you may know that in early 2010 Lane Kiffin replaced Pete Carroll who now coaches the Seattle Seahawks.)
Grayson is still proud to be a Trojan – another thing that cannot be taken away from him.
FIGHT ON, Grayson.
Regina
Dear family and friends,
Grayson seems to be slipping farther down the competency scale lately, especially in verbal expressions. I am lucky to get even one word answers again. In addition, he is not willing to stick with an exercise, game, or activity more than a few seconds and this is proving a real challenge for our new caregiver.
It's tricky to know how to fill his waking hours with more than just motoring him through the basics of waking, eating, drinking, brushing teeth, showering, shaving, hourly toileting, cleaning hands,… repeat.
The goal is to fill the remaining time with enough routine AND enough challenge to strengthen him physically and mentally to lead him to be the best he can be – whatever that is.
During cycles of improvement, even tiny improvement, it is rewarding and motivating to us. That helps bring out our patience and creativity as well as hope. It's natural to feel that we are building on a foundation and that the progress will stick.
During an extended time of regression (or suppression) it is can be frustrating and a little discouraging. The progress doesn't really stick at all. It comes and goes and cannot be depended on.
So we are always aiming at a moving target – in the short run and the long run.
If it is unsettling for us, I can imagine it is even more challenging for a young caregiver. We draw on 27 years of loving him; she has had only a month. She is, however, quite bright and a fast study. She will learn to dance to his music.
In hope,
Regina
