I have known about this question for awhile and had lots of time to mull it over. I have met my wonderful, caring and true friends through Ben. He seems to attract genuine people. And luckily they seem to like the rest of his family too.
Early on when Ben was little, we were one of the first families to have children in the neighborhood. After Logan was born, there were a few more people having children and we decided to form a group called Club Family. We swapped babysitting time and planned group activities for the kids and parents. This group became my social outlet - and Ben was always a part of it all. I can only think of one time when a parent made a misinformed choice of words to explain Ben's condition, but other than that, everyone has been warm and loving toward our family.
If we did not have the supportive environment from our neighborhood and Charlotte friends, it would have been difficult for us. We are far from family. They help when they visit, but it is not on a regular schedule that we can depend or rely on.
Writing this blog has helped tremendously with friends and family understanding truly what we go through on a regular basis. I think it has been helpful for them to read about our lives and then apply it when spending time with us. It has assisted in building relationships with distant relatives and friends we do not see and gives them a way to support us - through their positive comments.
In thinking about this question, I realized of the friendships I have "lost" over the years, most of them came from some conflict between me and that person, nothing to do with Ben or his issues. When I turned 40 last year, I made the decision to spend time with the friends who respect me for who I am, ones who will lift me up and share in the role of friendship. I have not regretted this decision, or even looked back.
But ultimately in answering this question, I see that roles within families and friendships change all the time - they have to because life is always moving. It is important to reassess, and perhaps make intentional choices that are best for you and your family.