eSpecially Ben

My MP3 player started with Bieber and ended with the theme from Rocky. I was running a 5k race called, Lace Up Son , a play on former Carolina Panther's  Steve Smith's words to Aqib Talib, " Ice Up Son " , after a football game that left the New England Patriots on the losing side. About two weeks before the race, I heard Steve Smith on the local radio show discussing the race and his foundation, the Steve Smith Family Foundation . He made a point to say that the race and events afterward were family oriented and that a portion of the proceeds would go to support Special Olympics. There was something about how he talked about the race and his vision for it that made me want to go. At 6am on Memorial Day, the day of the 8:15am race in a town 30 minutes away, I was definitely thinking twice about what I had gotten us all into. The kids were snug in their beds, Ryan and I could have slept in late, instead, I dragged everyone to the car. No regrets from any of us n...

Beginning in 3rd grade in NC, students take E nd  O f G rade tests for math, reading and additional subjects in upper elementary. For Ben and other children with special needs, they take a test called the NC Extend 1 . Ben was scheduled to take his over the next few days, depending on his cooperation and energy level. Minutes ago, I received a call from Ben's teacher telling me that Ben " rocked the EOGs ". She was able to get both reading and math sections completed with him. She saved the best for last: one portion of the test required Ben to read a section independently, then answer 3-4 questions. The proctor did not ever read the passage aloud. Ben answered all four questions correctly, each question had three choices. Unbelievable! We were uncertain about his reading skills, but this seems to prove that he is reading and comprehending. Sample NC Extend 1 from 2013 NC Extend Information Although they had the NOVA Chat ready to use for the testing, they did not ...

Ben was in the news tonight. Watch it here: Crowders Mountain Considers Building Accessible Trail

Ordering new equipment for Ben had been a fairly easy process in the past - contact a medical supply salesman to do a fitting and then a few months later, the delivery was made. Something happened with our past sales person, and Ben was neglected for the past year. For almost a year, Ben sat in a Convaid wheelchair that was way too small for him. Medicaid requires that you keep equipment for at least three years before ordering new, but had we known about this caveat - if the child grows quickly and cannot use it safely, then a doctor's letter will help get the equipment ordered before the three years, we would have pursued it. Ben's former Convaid chair was a 14" chair and Ben's hips were 14". Clearly, he was too large. His feet touched the ground, and he could almost stand up with it. The past salesman's family-run company was bought out by a large corporation with strict policies and goals. It is possible that this was the reason for the salesman's...

Mr. Terry, the kids' Sunday School teacher and I drove to Landsford Canal State Park in South Carolina. It is one of my most favorite parks, and it is known for its Spider Lilies and Canal System. Although I knew that Mr. Terry was a wonderful photographer of people, I did not realize that his skills expanded to wildlife. I will take credit for spotting some of it. Here are a few of the shots he took while we were there:

In 2011, eSpeciallyBen won the Reader's Choice Award for  Favorite Special-Needs Parenting Blog . It was a great honor and a lot of fun. This year, About.com took a different route and decided to ask past award winners to share their favorite blogs, books and resources.  Since we are always looking for something new that might work for our own family, this was a great idea.  Take a look at these sites:   Expert's Choice Your Favorites Pick Their Favorites  

This was sent to me from Shriner Hospitals for Children and I thought it was a good reminder for us all: Summer is a time for playground fun, camping, swimming, and other outdoor activities.  But unfortunately, it’s also a time when the number of accidents involving children spike. Did you know that 40 percent of all injury-related emergency room visits occur between May and August? The good news is that we can keep our children safer by educating them and ourselves on how to avoid accidents and injuries. Please read and forward these Top Ten Tips for Summer Safety  to anyone caring for kids! Teach children to buckle up every time they get into a car, regardless of the length of the car ride. Remind kids never to play with matches, gasoline, lighter fluid, or lighters. Do not leave children unattended near grills, campfires, fire pits, or bonfires. To ensure a safe celebration, leave fireworks to the professionals. When participating in any sport, use ...

A few months ago, I requested prayers for another boy named Ben, and I recommended his mother's blog,  Prayers for Ben Sauer.  Ben's mom, Mindy, shared the pain and anguish of finding out about their son's inoperable brain tumor and the family's journey as they prepare for the inevitable. Mindy's strength, honesty and willingness to be truthful during an incredibly painful time is astonishing. The outpouring of love from her family, friends and hundreds of strangers is visible in the fund raising benefit, prayers and comments for support. It brings me much sadness to share that Ben passed away yesterday. My thoughts and prayers are with his family.

Playtime after school at the local park Jugglers spun their pins around Ben's head, at Logan's request. It is actually a thing - standing in between jugglers while they throw their pins back and forth past your head. Logan and Sean got the chance last weekend to participate. Immediately afterward, Logan ran over to me and asked if Ben could do it too. My first reaction was, "H*%#! No!" but then I saw how much Logan wanted Ben to experience it, and I saw a way to do it more safely. The jugglers thought I was a lunatic, but they agreed to throw the pins over Ben's head rather than to the side of him. If he stuck his hand out and hit a pin, he could get hurt. The jugglers were relieved when it was over and Logan beamed, asking Ben if he loved it. I think Ben was glad to have made his brother happy. International Festival with dancing Chinese Dragons

Polar Express in Bryson City, NC On Wednesday, an activity chair was delivered to our home. It had been a year long process, and we were excited to receive it. The technician, Mike, who delivered the equipment was one of those people you connect with immediately. He was friendly and informative, and he was good at his job. I know how to move that activity chair in every way possible because of Mike's lesson, and that was no small feat. It was obvious he liked his job and the group of clients he served. At home in Charlotte After he gave us a thorough lesson on how to use the activity chair, I asked him some questions about the Convaid Stroller he delivered to Ben at school in early April. I was not there for that delivery so I did not know all the features. I mentioned that I had Ben's old Convaid Convertible Chair and that I had exhausted my resources to find a home for it. With its broken axle, no one could or would take it. In all other respects, the chair ...