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Showing posts from July, 2012

Nine Already?

2003 2012 Happy Birthday Sweet Boy!

TV Debut

We saw it on the evening news the same day of the event. The kids were pretty excited to have their moment on TV. I missed out since I was hunting pistachios in the car for hungry children. Check us out - it is quick so don't blink! The video is on the far right: Miracle Field Dedication - TV Story

Riding the High

When Ben is not doing well, it is an all consuming task to figure out what to do. And when things are good, everything seems brighter. For the past three weeks, Ben has been sleeping and eating well, walking with his walker and alert. "He's Back" was my second choice for a post title. Ben is back in full form - silly personality, sneak attacks and mischievous behavior. I will take it all - over the drugged out boy of a few months ago. The cause for these changes - medication. We have made just a few adjustments and they are working. In the meantime, we did have Ben's blood sent to a lab for genetic testing. Supposedly, it could tell us more about his seizure disorder and help in choosing the best medications for Ben. Right now, we will ride the high; enjoy a fun and wild summer, taking the boys swimming and hiking, going on road trips and playing disc golf. I take it all week by week, appreciate these easy times and keep my eye on the red head - because he is a tricky

Miracle Field: Home Plate Dedication

Today, our family attended the Miracle Field Home Plate Dedication for the new field being built at the University YMCA, just 15 minutes from our home. The photo shows the beginnings of a field complete with cardboard cut outs of players. (The back loader is real.) After many speakers (in 95 degree heat) the home plate was set in place, and then we were served the proper baseball meal - hot dogs, Cracker Jacks, Babe Ruth chocolate bars and chips. The field will be made of a hard rubber surface, perfect for wheelchairs and walkers. Games last about an hour, with just 2 innings played (I said a silent thank you when I heard that.). Each player has a buddy who is at least 12 years old. All players get to bat and it seems that the last batter always gets a home run. The focus is on meeting other families and making friends - baseball is just the medium. Homer, the mascot for the Charlotte Knights Baseball Team, was in attendance. The team's owner, Bill Allen, has a strong

Rainbow Camp 2012, Part 2

Rainbow Express is sponsored by a local church. I do not know how long they have been sponsoring this camp, but the model they use works. Each camper (special needs child) has a buddy (typical developing child, same age as camper) and a teenage counselor . They spend the week together playing, worshipping and becoming friends. Each day is jam-packed with arts & crafts, park visits, dancing, singing and always ends with a custom-made puppet show. Roughly 75 campers participate - so this is no small group. The youth of this church plan and execute this camp. They spend a large portion of their year planning for this week. Although adults volunteer and help during the week, the majority of the program is completed by the youth. The theme this year was "Be Strong," taken from Ephesians 6:10, "Be strong in the Lord and His great power." The entire church was turned into a castle. The week is always a reunion - everyone wants to see their past camper, budd

Rainbow Camp 2012

Will post more photos later but wanted to get this out tonight. Ben's counselor sent this to me. It was taken right after he went down one of the big inflatable slides at Rainbow Camp. We may even have video of the event.


From the backseat of the car, the question "Mom, what's your weakness?" was thrown at me. My first reaction was to figure out from where this question was coming. Then I remembered the Superheroes, Comics and Star Wars books, toys and movies at our house. Each characters' weakness is key to their story. Then I responded with, "I am not great with crisis." Of course, that answer was met with a "What's crisis?" I explained that when unexpected drama that especially included blood, guts and gore entered a situation, I needed assistance. They asked about their Dad's weakness, and I told them that he would have to answer for himself. Rather big of me, I have to say. The boys talked about their own weaknesses and then we discussed how important it was, in life, to understand your own weaknesses - know what you are good at and know what things you may need help with. My brain pondered this topic all day (and still keeps going) - What are

Hold On

tight to your perspective, or try a new one. I was not around when this was taken so when it popped up on the screen when I was downloading photos, I had to stop for a moment to collect myself. Then I noticed the brakes on the big wheels. At first glance it looks like Ben is taking the ride of his life. Brakes or not, isn't he?

Hotels Meeting the Need

As of March 2012, hotels were expected to comply with a set of ADA requirements. The pool and Jacuzzi, as well as bathrooms and other areas must be accessible. Many had a hard time meeting these requirements and a 60-day extension was given to the hotels. I fell into this information after booking a room through Priceline . After I booked online, I noticed the hotel's website mentioned ADA so I called to ask for a room with an accessible bathroom. Usually a handicap room means extra space in the room and bathroom. The hotel staff explained that I was able to get two adjoining rooms for the one price I already paid through Priceline. The room with the king size bed would be equipped with a handicap bathroom. When we arrived at the hotel, the staff was as helpful as they were on the phone. I was worried that this dream was too good to be true. I thought for sure, I was going to get slapped with a bill. However, we received the two rooms without an extra charge. The space was