Monday, June 30, 2014


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 behavior - and it was crazy - a friend suggested Benadryl. Oh how I had forgotten about my old friend, Benadryl. In the days before Doxepin, "Ben"adryll was the proclaimed miracle drug of our household. Ben's sleep issues are not new and we used Benadryl to get him to sleep when he was younger.

Benadryl worked for one night. Then it did not. I continued to give it to him for another week, but the next day he was grouchy, lazy and not much fun to be around.

I stopped the Benadryl.

No melatonin, no Doxepin, no Benadryll, no sleep.

To be continued...

Sunday, June 29, 2014

A Lesson in Patience and Prayers

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.

Wednesday, June 18, 2014

Summer? Here? Already?

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.

Monday, June 2, 2014


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 and she looked back at him. As if in agreement, he answered me. He said, "It's just us." I asked, "This is a group home, right?"

The man again, looked at the woman slowly. Then he turned to me, "This is my family."

I got over my shock quickly. My brain kicked into high gear, and I saw what I had refused to see before: that all three adults were male and looked very much alike. The man and woman were the parents, these were their children.

Quickly, I recovered and asked if they had help from state agencies. They did not. They were from Pennsylvania, traveled all this way to see the trains. They loved the trains. The stilted conversation went on for a minute or two.

As soon as I was away, I cried and said a prayer for the family. I had to really think about what I said to this family and the assumptions I made, and my stupidity and brashness. Never did my brain imagine that this was a family on a vacation.

I wept for these three men, for the unfairness of it all, for people like me probing into private lives, for patience of others and the enormity of how life can surprise me every day and show me love in different ways.