eSpecially Ben

Rainbow Camp is an annual camp sponsored by a local church.  This is a photo with Ben's counselor and buddy on the very first day. The buddy is Ally and she is the same age as Ben. The counselor, Jacob, is a member of the youth group at the church. He participated in a week long training before serving as Ben's buddy. I will share more as the week goes on. 

In late spring, I purchased a new pair of running shoes. While at the store, I noticed a flyer publicizing an upcoming running series. Each Tuesday during the month of June, at a nearby high school, this running company sponsored 50 meter, 100 meter, 400 meter, 400 meter relay and 1 mile races.  Thinking this may be a fun way to introduce Logan to running, we agreed to go the first night and check it out. As a last minute thought, I called the running store that afternoon and asked if they would allow a wheelchair runner. The woman who answered the phone thought it would be fine. Juliana is one of Ben's direct care providers, and I did not tell her about our plans beforehand. She is a go-with-the-flow kind of person and I was not sure what to expect, so when she arrived at our house in running attire, I knew something in the cosmic sphere was working in our favor. Juliana, in the year and a half she has worked with our family, has never showed up in running clothes. When I fille

About three days after I stopped the Benadryl, and continued "detoxing" Ben from all his sleep aids, Michele Huggins, the editor at Charlotte Parent Magazine , emailed me about writing an article about the benefits of nutrition on special needs children for their September issue of Exceptional Child . I agreed immediately, excited that she would ask me to write again for the magazine. I knew nothing about nutrition for special needs children except for a few buzzwords like gluten-free and, well... that's it. Two days later, armed with articles and research about nutrition, information from interviews with nutritionists, doctors and families with success stories, I decided to launch Ben on a four week Casein Elimination Diet. You will have to wait for my article to publish to find out all I learned, but what I will share is that I was a HUGE skeptic before I started my research. The time, money and energy were enough for me to say "no" to any change in di

About three months ago, Ben stopped responding to his usual sleep regimen of 5 mg of melatonin at 7pm and a prescribed sleeping pill called Doxepin, at 11pm. He was wild with energy until midnight, crawling around the house, throwing Logan out of his bed, visiting different couches and cackling at his favorite artwork in the house. He was a wired mess and on many nights took off his clothes and pull-up, opened the fridge and pulled out foods to make a smoothie. With the okay of the doctor, I increased the dosage on both the melatonin and Doxepin. It made no difference. I added herbal teas that promoted sleep, even trying different brands in hope to find one to do the trick. Nothing worked. We were at our wits end. I decided a detox was needed. No more melatonin, no more Doxepin. When I remembered, I gave him a tea, but that did not seem to have a huge effect on him, except adding to fluid that needed handling, if you get my drift. After about two more weeks of this crazy behavi

It was March 2013 when I started the process to build a bathroom for Ben. After much heartache and tears, a few wonderful people stepped in to help me with the process. Through their contacts and persistence, they found sponsors. Although I do not have many details, I do know that a few key Charlotte organizations are coming together to build Ben an accessible bathroom. There will be a fundraising event in the fall. As soon as I know more information, I will share. Deep breath. Relax. Repeat.

Summer hit fast and furious. It is finding time to write and not lack of material that is the challenge.  The stories and lessons learned every day are limitless.  Must follow my motto: sleep first, then write.

We visited the NC Transportation Museum to see part of an exhibit with famous trains from all over the country. While there, I saw an older, almost elderly, man and woman pushing three wheelchaired adults. What I noticed lead me to several questions and many conclusions: It was an obvious struggle for them, especially the woman who was pushing one wheelchair. I assumed this was a group home on an outing. I also saw that one chair did not have foot rests. The person's feet were just dangling. I was glad the group home was out on a field trip, but I really thought they were understaffed and perhaps needed younger, more healthier looking personnel. It made me think of Ben's future and his care. My curiosity got the better of me. When Ben and I caught up to them, I said hello and acknowledged that they must have a hard time pushing three wheelchairs with just two of them. I asked the man how come they were short-staffed. He looked at me slowly, very slowly. He looked at the woman