Enjoying the Season

In the spirit of enjoying the Season ... the kids decorated cookies today with their cousins and friend Sara. We are down to the last week and I've yet to get my Christmas shopping done. I just can't force myself to go near a mall on the weekend. Work should be relatively low key this week, as most my big deadlines have come and gone. The plan is to get out of the office earlier and do some evening shopping. The mall should be less hectic, yes?

I have to give a short commentary on the Newspaper article. I wish they had elaborated a little more on Jack's medical condition. No where does it mention that he is ventilator dependent, which is the main reason he receives all his therapy and schooling at home and why it is difficult to get him out and about much. People who have read the article (and who don't know Jack) have asked why Jack doesn't talk or go to school since, as far as most people know, the majority of children with MD are much higher functioning than Jack. However, Jack has a very rare form of MD called "Muscle-Eye-Brain" congenital muscular dystrophy and it not only severely affects his muscles - he also has defects of his eyes and brain. I really have no idea why Jack can't talk, it makes no sense to me. I suspect it's a processing problem. There is a lot about Jack's disease that I don't have the answers to, mainly because I haven't asked the questions. Jack's neurologist has always been very good at taking her cues from me. She's never told me more about Jack's condition than I've asked. In the beginning, I didn't ask because I didn't want to hear it. Now, I don't ask because it doesn't really matter.

Anyway .... I veered a little off topic there! One more thing on the article, I had to chuckle at the statement that Jack's therapists have told me that Jack's brain is functioning. I'm not sure where they got that from since it's the other way around. I usually have to remind the therapists that Jack understands, even if he can't talk. Regardless, the article really wasn't about Jack (I'm just neurotic about details), it was about Room for Joy and the wonderful work they do and from that perspective, the article was well written.

Have a great week and enjoy the sights and sounds of the Season ... and for all my Midwest/East Coast friends and family, that would include all that wonderful ice, snow, sleet, and mud! Gotta love living in the Valley of the Sun this time of the year :-)