I give presentations to nursing schools and medical schools in the Seattle area about our experience trying to convince Gabriel’s doctor to try to save him when he was born at 22 weeks and 6 days of gestation. And then I sent a proposal to this caregivers’ conference scheduled to happen in November, and I thought, nah… I’m not a doctor, they don’t want to hear from me. And, then they wrote to say that they DO want me to come speak.
This conference is put on by the Orthodox Christian Association of Medicine, Psychology and Religion, and the speakers are doctors, nurses, theologians, and a bishop will be the keynote speaker. It’s both a scholarly and a religious conference. I’ll get to talk for about 20 minutes, both about our experience and about our desire for doctors to be more willing to treat children born with conditions at the edge of survival and for the doctors to do more to seek out the motivations of parents in such a situation. You don’t know how you’ll react to the situation of a child who could be “let go” until you’re in it, and both doctors and parents need to examine what is most important to them in making that decision. Most of the information the doctors were giving us focused on a child’s abilities or disabilities as a result of an extremely premature birth, but we were more interested in his comfort and quality of life — yes, he was in extreme danger of disability, but couldn’t he be a happy disabled child? We just weren’t speaking the same language, and I’ll talk about my ideas for getting doctors and parents on the same page.
This event is at Holy Cross Greek Orthodox School of Theology, in Brookline, Mass., a city clear on the other side of this continent on which our nation was brought forth, and I don’t quite know how I’ll get there. While it’s true that Interstate 90 starts in Seattle and ends in Boston, the road is kind of… long.
I’ve come up with two ideas for how to get there — one is that I’m putting on a soup lunch at fellowship hour at church in Tacoma at the end of September asking for donations to help fly me to Boston. I’m thinking I’ll make Avgolemeno soup. The other is that I’ll be starting up a GoFundMe page asking for help on this, so expect lots of enthusiastic posts saying “Oh, wow, look at all the wonderful support people have provided for me!” Because everyone loves reading about fundraising, right? Alas, life as a writer / advocate has not been particularly lucrative for me, and plane tickets don’t buy themselves.
Normally I don’t think I would try to fly myself to the East Coast just to give a talk, but this opportunity is particularly important because it will allow me to connect for the first time to the community of Orthodox caregivers and thinkers on this topic of edge-of-life / end-of-life treatment, and creates the opportunity for us to create a forceful voice for patients and families. We felt quite alone in the antepartum unit, wondering if we were crazy for sticking to our guns and wanting our child to live. I’d like there to be literature available, people to call, and other help available for parents in these kinds of situations.
So that’s the big news for now. It’s been a month and a half since I posted anything, so look for another post soon to explain some of what’s been going on this summer! And, of course, a bunch of “progress” posts on the GoFundMe thing. Anyone here have advice on running one of those?