Taking Part

Maggie is fairly well known in the education and medical circles in San Francisco. I am not talking famous or anything, but her extensive disabilities and medical problems mean that we interact with many professionals in both worlds. Because we live right in the city close to the medical center and the universities, we are accessible to those professionals when we need them and occasionally when they need us. This week we were needed. And we take part whenever we can. It's important to pay back the people and systems who have helped us.

On Monday, I participated in a study through UCSF regarding the impact on families caring for disabled teenagers and plans for the future. This was part 3 of this study. It was interesting and thought provoking. Looking ahead is something I do very rarely and with great trepidation. I did realize, however, that my outlook has changed since Part 1 of the study eight months ago. Maggie’s health is far more stable now than it was then. My thoughts about the future are not as grim as they used to be. That is a good thing.

Tuesday I took part in the Family Advisory Council meeting at UCSF. We meet regularly, every month or two. They want family input on various issues, for the past year, it has been input the design of the new children’s hospital. We actually had impact on several things, and that felt good.

Wednesday we had a speech student from San Francisco State University. He had to interview a family dealing with AAC. (AAC is Assistive and Augmentative Communication – that is what Maggie’s communication device is, but there are many many different things that fit into this category.) Unlike the UCSF study, this focus was now, the present, not the future. He asked good questions that were difficult to answer. For example, does Maggie ever communicate her frustration at not being able to do what other kids do? The answer is easy, no. She does not communicate it, and in all honesty, I do not believe she feels frustration.

But now it’s in my head.

Those of you who know Maggie know that she is a very happy kid. I may be delusional, but she is happy with her life, at least when she is at home and not in the hospital. Remember, this is the only life she has known. I think she views her situation differently than we do. We are projecting our own fears and desires onto her but she does not share those. In fact, I from her viewpoint that is not a wheelchair, but a throne and she is the queen. We are but the subjects here to do her bidding.

But now I have to wonder.

Damn college kid, making me think.