In the past Chris has updated the website due to my resistance to technology. Today, however will be Mommy’s turn to write. I felt this message was so powerful, it needed to be shared. I have been working with Jeremy on his Cub Scouts requirements, and we attend a Den meeting every Thursday night. Yesterday we worked on a law enforcement piece in his book. Jeremy made the comment that maybe he could be a detective when he grew up. I did not reaize that last night would turn out to be a huge moment for me on our way to the meeting. Jeremy started our car conversation with a very serious tone (actually startled me). He said almost quietly and very slow and clear. “Mommy, I just saw my future”. I thought he was going to mention about being a detective, so I asked him what he saw. “Mommy, I am way up high………I’m shaking so many people’s hands”. Then clearly hearing a true smile in voice he says, “I don’t have Battens Disease anymore……..then I see you and Brandon…….and oh, I tell you that I love you”. With tears flooding my face faster than the rainfall outside, I was speechless! At 8 years old, Jeremy knows his destiny and feels at peace with it. That vision he had could be when he is a teenager, or even 80 years old. Wise beyond his years! What a special child God has blessed us with. In today’s busy world, I encourage us adults to use this message to give our loved ones an extra special showing of love and gratefullness. The children are the future, and much more insightful than we know. In belief for a supernatural year!!! Wendy

Visiting Dallas tomorrow for a BDSRA Board of Directors meeting on Saturday and Sunday.  I am kind of disappointed to be leaving Charlotte.   There is a winter storm warning for tomorrow afternoon and Satuday here and I love to play in the snow with Brandon and Jeremy when we do get enough accumulation.  I would really love to see the puppy play in it for the first time, aahhhhh but duty calls.  I am very excited about the things that we have accomplished over the last couple of years as an organization, but I know there is much to be done……….

Wendy and I went to see the movie this afternoon.  I am very torn.  On one hand I am very grateful to the big studios for making a rare disease movie.  Particularly a lysosomal storage disorder like Pompe disease which is very similar to Batten Disease.  On the other hand, they have to make it fit into a two hour time frame so they really can’t delve into all the emotions, ups and downs, difficulties etc of a life outside the norm caring for affected children.   They made “the special medicine” look so easy and it’s not.  They didn’t show how hard the research labs work, they didn’t show how difficult it is to get funding, they didn’t show the countless hours, time and money that families dedicate to fundraising and raising awareness about their rare disease.    Many times these families don’t have any of these things to spare but we do it anyway.  I really, really, really appreciate the publicity and exposure of rare diseases but it is never enough as long as there are kids dying out there.

 

Jeremy was so proud to get his Bobcat badge at Cub Scouts last week!!!

Brandon got even for the nose bloodying incident last night.  Jeremy has a nice gash on his forehead where he got pushed into the TV stand last night.  Wendy was downstairs when Jeremy came down really calmly and told her he was hurt.  He actually claimed responsibility for teasing Brandon and making him mad enough to push him.  We almost made it back to school without incident!!!!

The over/under on what time I fall asleep tonight is currently 11pm.  I haven’t made it to midnight  the last 3 years running, I bet I keep my streak alive!!!!  Hope you all have a great 2010. 

Brandon and Jeremy gave us an AC/DC concert tonight and currently they are listening to the Lion King soundtrack.  Talk about contrasting tastes!!!!

Merry Christmas to all and to all a good night!!!!!! Oh wait, I have Santa duties yet…….Duty calls!

Darlene and Randy Royalty lost one daughter to Batten Disease in 2007 and lost two others this week.   I really don’t have the words to describe what I am thinking.  The heartache goes so deep, but then to have it twice within a few days, especially this close to Christmas.  Damn. My heart goes out to them, what do you say that hasn’t been said a hundred times.  I wish we lived closer so that we could just drive over and give a hug,  not even say anything, just be there.   Damn.

I had forgotten how similar an infant and a puppy can be sometimes!!!!!!  How can one animal poop and pee so much???

True exchange tonight:  Gotta understand that Brandon and Jeremy are always play fighting with each other as Star Wars characters, Pokemon characters, YuGiOh characters, Power Rangers characters, etc during commercials in their shows.  At 7:56pm we hear the fighting begin and shortly thereafter Brandon is screaming bloody murder(literally as it turns out)  Wendy and I go up there and Jeremy is crying(not sure why since he inflicted the pain) and Brandon is holding his nose which is bloodied.  As we get them to calm down Brandon says Jeremy punched me and I didn’t see it coming…….uh, HELLO……….oh never mind.