eSpecially Ben

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

The paperwork mounts as I file reconsideration and waiver forms for Social Security Income (SSI). There are some weeks that I receive a letter from Social Security Administration (SSA) every day, sometimes two come in one day. Next in line for the appeal process is a hearing with an Administrative  Law Judge (ALJ), which I found out today could take up to a year to schedule. Today, I spoke with a lawyer from the legal aid organization in our state. They have a file on us, but are not officially handling our case. It seems they will jump in after I have exhausted all appeals and waivers. They do offer advice on what paperwork to file and what steps to take to keep our case moving along. In another arena, Letters of Medical Necessity (LMN) have been added to my paperwork frenzy. Our local management entity, a private agency that manages the state resources for community programs for children and adults with specials needs, Medicaid, etc, has changed. The new company is efficient, o

Our Family Weekend experience at Victory Junction was incredible and best shown through photos. It is the only way for you to see how much we did in less than 2 days. Not pictured, the Talent Show, Fab Shop (get your hair painted), 50's Rock & Roll Dance, tree house (accessible to wheelchairs), mini-golf, maze, arts & crafts area and wood shop. A pool & zip line are available during the summer. The families we met were all great. Kids made quick friends with our cabin neighbors. Our camp counselors showed us the ins and outs of the camp and activities. Personally, the camp wore me out. Ben was too excited at night to sleep and the eight twin beds in our cabin were too much for him. He had to travel from one to the other. This would not have been so bad had it not been 10pm at night and other family members were sleeping in them. Inside our cabin. Sports Complex Cabins for the campers and families. Dressed up for the 50's Rock &

If you want to make Ben mad, give him an activity that he sees no point in doing: make him throw a tennis ball to no one and then make him walk 10 meters in a particular direction that is not of his choosing. Ben participated in two events this year in the Track and Field Division of the Special Olympics Spring Games. He took silver for the walking event, and only threw the tennis ball when I stepped in to catch it. In contrast, Matthew , the son of my freshman college roommate and good friend, Karen, reveled in the games. He took a Gold for the 100m run and exclaimed, "I did it!" while he was on the platform. Last year he  walked, but this year, he stepped up his game and ran the entire race.   Matthew, 9 year old Olympic Gold Medalist Each athlete is paired with a high school student at Charlotte Country Day School. This year, Jacob, helped Ben get to and from his events, participate in the crafty activities and maneuver around the crowds. Jacob

Two different moms wrote to me on the Full Enough post and I thought they were important enough to re-post their comments here: My 10 year old son, Sam, and I attended the ceremony today after seeing your story on the news a few days ago. As soon as the story ended, he looked at me and asked if I would take him. Since we live in Gaston County, it is our spring break. I knew it was something we had to do! I felt truly blessed to be a part of today's events. I have been working with special needs children for almost 9 years now, and I realize just how special these kids truly are! Sam had an amazing time and is also proud of all of the athletes! Thank you for getting the word out! We hope to be there next year! Good luck Ben!!!!! -- Donna Kostiuk I was debating on texting my son's teacher to find out what time and if the parents could go to the Opening Ceremony when I saw Astrid Martinez on WBTV yesterday morning. I ran into one of the cameramen for WBTV and thanked them