So I thought I had an appointment with Sen. Milkulski’s health legislative aide this Wednesday at 11, but after a series of unanswered emails, I no longer believe I have this appointment.
I had written IRSF in advance of this supposed appointment to make sure that all the information that I had gotten at the conference still applied. One of the major supporters for the $500,000 earmark is Ted Kennedy, who is undergoing treatment for cancer right now so I didn’t know if it was OK to still say that he was supporting the cause, since I guess he wasn’t actually going to be there on the Senate floor when someone yells out, “so does Rett Syndrome need half a mil?” because he’s busy fighting his own battle. Turns out that the major turning point of this earmark happens tomorrow afternoon at some sort of “marking up” session, so we’ll know by tomorrow if we’ve got it or not, so this appointment Wed. morning now seems pointless anyways. Sigh. I know I know nothing about how the political system works, but I’ll figure it out someday.
You keep after them girl. The squeaky wheel gets the grease.
I know what you mean about summer. Sleeping late, the pool, no homework. As Josh says, “summer rocks”.
You are my hero for even making the appointment. I would be peeing my pants! ALthough, I am getting a little more brave and out spoken when it comes to educating people about Rett Syndrome. I think one IEP does that to a mom 😉