05 May 2011
Day 536 – Grayson’s Journey
Dear family and friends
Today was another alert day for Grayson. As an example, Regina asked him to reach into the car and pick up some trash when they arrived home this evening. He did so then he proceeded to take it to the trash can without prompting. That is unusual for Grayson, but wonderful! Thinking to the next step and executing without prompting is a huge win! This has been several days of alertness in a row – almost every day for the past two weeks with the exception of Sunday morning. I wonder what is going on in there.
Today was Grayson's last day at CNS in Encino. Unlike his departure from Bakersfield, there was no fanfare, no farewell, no celebration – not even a "good luck". We simply went home after cleaning out his locker and getting our parking ticket validated. We will return for a discharge conference tomorrow, but I have the nagging feeling that they are relieved that we are leaving. Anoxia is just too complex an injury for this facility and Grayson is too injured for them to deal with effectively.
In 10 days we will hit the 18 month mark since the incident that put us in this predicament. We are now at the place I was told we would arrive at very early on – on our own (from a resource point of view and without the financial benefit of insurance) to provide the best care and therapeutic environment we can to maximize Grayson's quality of life. We will do our best as long as we are able.
Pax!
Brant
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Ah, insurance. The tyranny of the bell curve. "In aggregate, the average person needs X, therefore every single person must receive X." We who walk the neurological highway, we're each very conspicuous outliers. It's no wonder that The System throws us over the side; we bring the inadequacies and failings of The System into embarrassingly, painfully, sharp detail.
ReplyDeleteBut as to "quality of life"... He's in your family. Of course he has quality in his life. Just being around your family brings people quality of life. Just look at Grayson's smile at the end of the day... that smile will tell you immediately that his life has quality.
Of the many things worthy of your concern... that's not one of them. Making life better for the people around you is in your nature. I know that because being around Grayson made my life better. And where exactly do you think he learned how to share that wonderful, magical gift?