YouTube video

Very Good informational video about Batten Disease made with real Batten families and kids.

http://www.youtube.com/watch?v=DQChRSCWtYA

Easter Weekend

All three children enjoyed Easter this year. Brandon was up at 3am trying to find evidence of the Easter Bunny. This is another Batten trait, he was fixated on this. Poor Wendy, she was stuck with Brandon approaching her every five minutes from 3am on(Dad was sleeping!). "Mommy, the Easter Bunny took the picture off the wall(we are painting the study, so I had taken down the picture)" "Mommy,the Easter Bunny moved that chair in the other room." "Mommy, he moved Jeremy's Big Wheel out in the garage." Not sure which is scarier, that he actually went out into the garage or the fact that we didn't know about that until AFTER it happened.

Cubby had to get an Easter Basket too, he got two toys and some jerky treats. The toy in this picture lasted exactly 11 minutes before the stuffing came out of it. Luckily they were buy one get one.

Boys are enjoying spring break, but one of their Easter Basket gifts was alarm clocks to help them get up for school. Many of you know that they have had difficulty with this over the last couple of months. Brandon got a Spongebob alarm clock, with a FOGHORN for one of the options, funny stuff. Jeremy got a 'Mater alarm clock(from the movie Cars) that is very funny also.


FUNDRAISING UPDATE:

Pam Barnard has received some great raffle items for the Basket Party including a Bosch table saw, a Wii game system and a children's bicycle! So keep the date open, April 18. Contact us at chawk328@ctc.net for more information and tickets.

Picking up steam for the June 7 event also, picked up a couple of sponsors this week for our Tshirts. Be on the lookout for more information, soon.

Busy times

Many things happening in the Hawkins household these days.

Brandon has been visiting Harris Road Middle School as next year he transitions into 6th grade. He already has people there calling him by name after 3 or 4 visits....does it surprise you? Jeremy has been having a difficult time as of late. He is in denial mode telling his teacher that Brandon has Batten disease but he doesn't, and we have to almost trick him to get him to work with Ms Bunn and Mr Ian. Also, we said goodbye to Nurse Lisa at Odell this week, she moved to SC and she will be greatly missed.

Things are coming along well for the Basket Party on April 18th. Pam Barnard is AWESOME for organizing this, and thank you to the AIG students and parents, they have been doing a great job. It sounds like there will be some wonderful items for people to walk away with.

We have also progressed working on ourboys 5k Festival. If you are going to run please sign up so that we can begin to get an idea of how many runners to expect. We encourage everyone to bring family and friends, this is a family festival. You don't have to run the 5k, walkers are welcome!!!!!! Also if you are interested in volunteering some time that day please contact Andy.Brown@wachovia.com and he will get you signed up. We are still accepting corporate sponsors if you or someone you know have a company that would like to be part of this great cause, please contact us!!!!

Crying in the car today

Twice today, I was brought to tears in my car for entirely different reasons.

Brandon and I were coming home from church, Wendy was sick and Jeremy being a momma's boy stayed home with her, when I asked Brandon what he wanted for lunch. He thought for a moment and said "Fresh squeezed Orange Juice." This was out of the ordinary for him so I asked him why.

"I want to eat nutritious. Do you remember when I was smart daddy? If I eat nutritious maybe the Batten Disease will stop killing my brain cells and I will be smart again." Excuse me while I turn off the faucet.......

Later on today I took Brandon and Jeremy with me to softball practice where they were great. We stopped and had Dairy Queen on the way home and were almost back to the house when Sister Sledge "We are Family" comes on the radio. One of their favorites. So here are the three of us rolling down the road singing "We are Family, I got all my sisters and me" when Jeremy screams "C'mon EVERYBODY, SING IT" Brandon sings "take it away my brother...." and Jeremy, in perfect time I might add does a drum roll and an "OH YEAAAAAH" I really thought I was going to wet my pants. What a way to end a beautiful weekend in Charlotte.

My friend Baron and his father in law Gary spent the night here last night on their way to a hunting trip in SC. It was good to see them again, Baron took a great picture of the boys.