Dear family and friends
I spoke with Grayson on the phone this evening. In person, he frequently goes non-verbal, but on the phone, he has made the connection that he has to use his voice. Next time he goes all quiet and whispery on me, perhaps I'll pick up my cell phone and call him!
Today he had a rare second opportunity for music therapy this week. One of the staff is also a musician, and came to the rec center to do some music. Grayson went over there check it out, and according to his RA, he seemed to enjoy himself.
Tonight was laundry night. Grayson did his laundry, helped his RA prepare dinner, did the dishes, and was generally helpful and happy. I hope that this is a result of adjusting to the change in meds. As of tomorrow, he will be completely off of one, and they will start weaning him off the second later this week.
Regina did a wonderful job of discussing the conference we had yesterday. I'll share my perspective over the next few days, mostly building on what she has already shared, and giving some specifics so that you may have a better idea where Grayson is today. I don't want anyone to lose perspective – Grayson has come a long, long way in these past few weeks. That in itself is a miracle for which we are grateful. I just want you to be aware of his current status, and to understand the uphill road he needs to travel.
Tonight I will share a bit about Grayson's abilities in the area of sensation. This is one of the areas that Grayson has significant deficits. The sensation areas most significantly impacted are the ability to distinguish hot and cold, his sense of taste and smell, and his inability to sense the relative position of his body. Several of these are critical safety concerns – relative position of his body while around moving objects, the ability to smell smoke or spoiled food, stepping into a scalding shower and not able to sense the temperature, or the inability to sense freezing temperature and getting frostbite. Unfortunately, these are areas that are not likely to improve much with time, and Grayson will have to learn coping mechanisms to compensate for their loss. Fortunately, coping mechanisms can be learned, and since he is not the first to have these challenges, there are known ways that they can be taught.
It is a miracle that we have the ability to teach Grayson a new way to live. In reality, I believe that the Lord is teaching me more about His miracle of life each day. Life abounds from wheelchairs and walkers, the non-verbal, the bolus fed and the incontinent. I will never again take for granted the blessings of health that my family and I have been given.
Pax!
Brant
Yes, the "differently abled" nervous system. Always a source of ... interesting ... experiences.
ReplyDeleteFrom my own experience with a nervous system that is constantly sending, for lack of a better phrase, "faulty data," it's a constant mult-level learning experience. Some of it is external, acquiring coping mechanisms to work with or around the problem points; much of it is internal, as your nervous system rewires itself and you begin to notice that you actually can sense where that limb is, but not in the way that you used to. Caregivers are a wonderful resource when you're working on coping strategies, but the internal stuff takes the time that it takes, and your convenience is definitely not one of your nervous system's priorities, unfortunately.
But wrapped in all of these inconveniences are mysterious blessings, that also reveal themselves in their own times. Perhaps these are things discovered because you have to open new doors of perception within yourself as you adapt to new challenges. But they're definitely there. My own interface with the world has completely changed in ways that have nothing to do with my differently-abled nervous system. Really wonderful ways. 'Course, I still have problems with all sorts of things... but the cool parts are way cool.
As the song says, "God works in a mysterious way, his wonders to perform."
Hi Brant and Regina:
ReplyDeleteAmen and Amen to what Mr. Parker has penned! He is so correct, and I can only agree with him. Yes, we may have our disabilities, but then we have our newly discovered ABILITIES, the ones we never new before...no kidding. And all of our "screw-ups" that we never did before which make "normal folks" think we are strange! ;-) And they are right, of course, in a way, but they never know for sure what's up, and neither do we! What an adventure! And all the way through all of this, "He leads His dear children along....some through the fire, some through the flood, some through great sorrow, but all through the blood".
Our prayers are really with you through all of this "newness".
In Him,
Doug
Have you seen or heard of the book "My Stroke Of Insight"? I highly recommend it. It's a case study of how the brain works by a neurologist who had a stroke. Fascinating.
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