Sunday, December 16, 2007

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 :-)


Anonymous said...

I'd like to move today! The snow can go!! It looks like everyone had fun with the cookies. Give Jack a big hug from his buddy Nathan!

julie w said...

Yep, it's freezing here too. I'm rarely cold, usually the opposite! (must be THAT time of life ;)) But, I'm really feeling cold all the time at the moment.

Looks like decorating the cookies was fun!


Sarah said...

At least the article showed a picture. Hopefully a lot of people will take note. The room is gorgeous! I'm so happy he was able to receive this gift! You are all so deserving!

Cindy said...

It's a very nice article Ann and you did mention his "medical equipment". Reporters never seem to get all of the details right, which is something to keep in mind when reading the news.

Good to see Sarah:-)

Melisande said...


You thought about writing the author for clarification? It's probably too late now. Sometimes they'll post a retraction or something like that, mainly just to clarify Jack's condition. Like you said, it did what it was supposed to do...bring attention to a cause.

Yes, enjoy your sun! Soak up some extra rays for me and my family!! May your feet be light and your patience be long while shopping at the MALL!! I have threatened to take a few hours off later this week to take D to see Santa. I'm just going in and getting out!!!

Anonymous said...

great article, but the idea of you being "told" about Jack by anyone is certainly worth a chuckle:)
Happy to see all the kids enjoying the Christmas Spirit too
xo christina

Rachel Marini said...

Hi, I've been following Jack's blog since early summer. Yours was the first sight I came across when searching 'Tracheostomy' just before my son received his. He contracted a viral infection to the brain and as a result has encephalothopy/atrophy. He is now on a ventilator. I just wanted to thank you for taking the time to update Jack's blog. I know it's an outlet for you, as my son's Carepage is for me, but I love reading your insight and I can always relate to many of your struggles, from the medical supply companies, to the doctors appointments, I just enjoy hearing it from a seasoned veteran's perspective. Thanks for your wisdom. Best wishes to you, Jack and your family!! Merry Christmas,
Rachel Marini

PS- Jack is as adorable as they come!