Yesterday was the date of the Seaside Heights, New Jersey JDRF walk, as part of team STARFLEET - Region 7. One of the other STARFLEET chapters in our Region has had a family team at this walk for several years – since shortly after the chapter president’s daughter was diagnosed T1.
After the Walk, our two teams went out for lunch together. While we all live within an hour or so drive of each other, my Other Half and I rarely get to see the members of this other chapter, either face-to-face or online – and most of the time we have multiple chapters together, there is little time or inclination to discuss diabetes. The post-Walk lunch, however, is a perfect time.
I was surprised to find that, for people who are as connected as the young lady’s parents say they are, it is as if a lot of the news never made it to that branch of the network. For example, the modern understanding that T2-without-any-insulin-production is not identical to (autoimmune) T1. Or the news that Lifescan added more memories and a data port to the UltraMini (old news! – the current news being the two new colors added in). The father is still struggling to manually download the girl’s pink UM. (Expletives deleted), if I had had carried down the one I’ve been working with (and the thought had crossed my mind, but I settled for the Keynote as spare, instead), I’d’ve given it to them right-off! Needless to say, the UM with dataport is now high on their shopping list (if they haven’t already acquired one).
Then, there were the fun things – like letting the parents know about the inexpensive silicone-bracelet medical IDs that kids might actually wear and showing off the quilt design I’m still trying to put together correctly.
But here’s the rub… if the parents are so plugged-in, why hadn’t they heard about the Ultra Mini dataport model? Why isn’t the news coming from all around the OC getting to them? I always had the impression CWD was huge, JDRF was huge, and that there were a lot of very active parents’-of-T1 groups. Where is the network (or the internetwork) breaking down? It absolutely frustrates me to find parents struggling simply because they didn’t know inexpensive and/or upgraded solutions are out there.
That all said, I find that talking “d-talk” face-to-face can inspire me and excite me and invigorate me, even as the lack of information and education out there can frustrate the hell out of me.