So the good news today is that, through the persistence of emails, I found out that donor #2 has been contacted and is willing to donate. Phew! Yay! Thank you. Maybe donor #2 will soon earn the title of donor #1. It seems only fair, doesn't it? Or, so as not to ever forget the willingness of donor #1, I need to come up with a very dignified name for donor #2 that does not negate #1. Any suggestions?
A quick lesson was re-learned today about self-advocacy. The email chain to the transplant team here started like this: (abbreviated to make it pithy and interesting) "Hi. So is there any word?". Response, "No. We're still waiting to hear." Then me, "Could we at least find out if the donor has been contacted? They said they would begin that process on Monday. It's been a whole work week". Them: "Well, typically they will contact the donor and then set up dates and then contact us". Now, here is where you either accept this, or you decide to PUSH. Right? What would YOU do?
We've all been in this situation, not with transplant teams, thank god, but with other doctors, insurance companies, banks, schools, airlines. You name it. And as I learned over again today THE SQUEAKY WHEEL GETS THE GREASE! Because when I responded back, "I don't mean to be a pain, but isn't there a way to find out if they've accomplished the first step of making contact? Because if they haven't, maybe we should move on and go back to the registry and look for another donor." Well, golly, if I didn't have a response in 20 minutes that the donor was willing! Maybe I was running the risk of them telling me to bugger off. But they didn't I'm just saying, don't forget to squeak for yourself!
I read a book to Ari tonight given to me by one of the librarians (Steve) at school. It's called Courage, by Bernard Waber. It's for anyone to read, at any age. But he gave it to me of course because of the challenge coming up of the transplant. And it's a great book because it reminded me of how courageous we all are every day, without even taking notice of it. Anytime we feel a little nervous about something, but do it anyway, that's courage. It could be parallel parking in London, or trying mussels for the first time. Or it could be going in to discuss a matter with the principal. Or advocating for yourself! The thing is, we do it all the time. So if you're ever feeling like you had a wimpy day, I bet you could look back really closely and find something you overcame, or find a situation where you trusted yourself and went with your gut. It could be as insignificant as holding back on that extra clove of garlic for the sauce or taking the fish out of the oven on time. Or it could be as big as organizing a bone marrow drive or searching out a special book for a mom at school who you know could use some encouragement.
xxxx
Dina
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