eSpecially Ben

Two weeks ago, I read a website about a little baby who has severe facial abnormalities that are fairly uncommon. The parents, who seem to be amazing advocates, were able to introduce their child to the town with an article in the local paper about her disability. The parents hoped to make introductions simple – they said, we’d love for you to come and talk with us, but we welcome a wave hello too. They were positive and open, and they gave easy instructions for friendly neighbors on what to do if they were seen out and about town. Most people do not know how to react, what to say, where to look. So rather than be uncomfortable, they just ignore the whole situation, which comes off as being rude and ignorant. Or if they do take the risk and talk to the family, they may ask a question that may not be taken well by the parents. When I was in college, I roomed with someone from St. Croix. My first comment to her parents was, “So your daughter is an international student.” Her wonder

When I started this blog just a few short weeks ago, I did not expect to find a community of support. To tell you the truth, my knowledge of blogs was extremely limited. Last week, I looked up blog etiquette to make sure I was not offending anyone with what I was writing, saying or posting. I have emailed my cousin in desperation looking for technical advice. So I am very new at this. Today, I received this "One Lovely Blog Award" from a fellow blogger. I am touched. I am happy to be part of this group of warm and fuzzy people who support one another and help get each other's messages out. And the funny thing is, we are basically strangers to each other, until we read a blog and identify with someone through their funny story, sad experience or goofy mistake. I know it is a cliche, but "It's a small world." When you receive this award, there are rules to follow (and I love rules): Accept the award; Post it on your blog together with the name of the p

Early in my career as Ben’s mom, there were some situations where I was adversarial in my responses and reactions to circumstances where I thought Ben’s needs were not being met. With guns loaded, ready to fire, I would take out anyone who I thought might not be giving Ben the best possible care. Instead of making the situation more positive, I may have alienated the people who could really help me. I realize now that almost everyone wants to provide the best they can for Ben or any other child that has a special need. Like with anything that is sensitive and very personal, misunderstandings happen easily and can add to an already emotionally charged issue. The parents have emotions about what they expect for their child and others have emotions about the unknown. Fear, uncertainty, worry are all floating just beneath the conversations you may have when you are asking for assistance for your child. Being an advocate means partnering with others, building relationships and being aw