eSpecially Ben

Grandma and Ben at a sports bar. I don’t have to tell you how wonderful it is to be a grandparent. All of a sudden it is your house they run to instead of run away from. You receive unconditional love; you get a picture every time you show up; great hugs, kisses and all around recognition for just being you. It is kind of like being a kid again. So there you have it, I am one happy grandma. Ben was my first grandchild. I think that once we knew that he was medically healthy, I set my mind to getting him to be all that he can be. I think at first I was a little too gung-ho and did not take into consideration the feelings that my child and her husband were experiencing. I was, you have to do this.. this .. and that. That’s just me. I like to find solutions to situations. I want to know the end result. Plus I am a special educator so I know a lot of what is out there. I think I did manage to offer some good suggestions. Vanessa is very good about taking advice, and I appreciate the...

Last Tuesday, I spoke with two friends who I do not see on a regular basis. One friend shared a dream she had about Ben two months ago. We were all in front of the YMCA walking to our cars, ready to go down a staircase. My friend gave her hand to Ben to help him walk. In the dream, she said, he gave her this funny look, like, "I don't need your help." Ben was walking by himself, a bit hunched over, but walking on his own. I have had many friends and family tell me about this type of a dream, where Ben is walking or talking. It always makes me smile to think that people worry about Ben like we do, keep him in their thoughts and pray for his well-being. The other friend lives on the opposite side of the city, and we have not seen each other in a few years. She left a long message about a child she had heard about that had similar traits as Ben, and they had found something that helped the child. She wanted to send me the article about it. I have to admit, when I got the m...

One of my very best friends from a long time ago called me last week to talk about her baby who is undergoing testing for medical and developmental issues. Understandably, she is upset, sad, tired, discouraged…all the normal feelings you have when you find out your child has special needs. In the middle of her sharing about her difficult time, she apologized for not being there for me when I was going through the same thing several years ago. She told me she never understood what I was going through until now. She wished she had been a better friend to me back then. I was dumbstruck when she said it. I kind of blew it off and told her not to even give it a second thought. And I meant for her to not give it a second thought. I, on the other hand, have given it many thoughts. I even cried when we got off the phone (and remember I am not a crier.) For someone to say what she said to me meant a lot. I have no anger or bad feelings to anyone who does not understand what we we...

After two brain scans, genetic testing, three neurologists, a developmental pediatrician and Duke Children’s Hospital, we gave up on the idea of a label for Ben's disability. About 25% of children with special needs supposedly have a “non-diagnosis.” We were fairly comfortable in this category. Plus the searching was getting expensive, disappointing and tiring. On our fourth neurologist, we hit the jackpot. I brought Ben’s 2 MRI scans with me. Before seeing us, the doctor reviewed them. The neurologist walked into the room with a few brochures and said, “Ben has hypoplasia of the corpus callosum.” The doctor explained about the organizations involved in research and support, and she suggested we sign Ben up for the study in California. I read the brochures and sure enough, Ben fit. Hypoplasia of the Corpus Callosum in plain language means the bundle of 200,000 nerves that connects your left and right brain (corpus callosum) is thin (hypoplasia), about 60%. For some reason the...