Thank you all for responding.
DDrumminMan - I am very sorry that you know. It sounds like our sons would be about the same age. Did I read in your bio that you also have T1 diabetes? That must be very tough to deal with, especially since losing your son, Nick.
I learned of the "dead in bed" syndrome afterwards. And I have read that it's mostly boys affected. Billy never had a seizure that I am aware of but I wonder sometimes because he was fine one day and gone the next morning - so fast. College, exams, sports, parties, and lack of sleep may have triggered something that we'll never know. He was a diabetes camp counselor in Rochester and had just had a visit at Joslin in Boston only 2 weeks prior and had no problems and a decent A1c. He had all the advantages we could provide him with. But you're right, it really doesn't matter for us at this point because we just miss him sooo much - plain & simple. However, if we can prevent a simple problem from becoming a nightmare for someone else? Please keep in touch - we may need you and you us!! P.S. I visit the U of Wash every few years. Did my fellowship out there and have some friends from the military out there. Great city!
Stanley Bashura - We know you are not cold & uncaring. We are not mad at the pump - my husband and I are both in the medical field and know that "stuff happens" even with all the best intentions. And we realize that pumps helps most of the people most of the time. We are just really mad at the real culprit here - diabetes. I just wish we had gotten Billy the pump while he was still at home and had us looking after him on a regular basis and helping him learn the mechanics of it. With his computer, cell phone, MP3, etc.. we thought he could totally work with an electronic device and it might even be more compatible for him.
Gina Thank you for setting up this site and listening to everyone! My family & I go to grief support but have not found anyone that has had to deal with T1 diabetes or any other chronic illness. Sometimes we get reactions from people who have lost children to other circumstances (accidents, suicide) tell us, "Well, you must have known this could happen or have been prepared for the worst". No, we really weren't. We didn't have our heads in the sand but were all very positive and know there are mostly success stories. Or we get comments like, "Was he not taking care of himself?" We don't think ill of them because if we had no experience with diabetes we might think the same. It's still tough experiencing a loss somewhere between a terminal illness and a sudden unexpected death. We know this was a rare and freak accident of sorts. We believe that for just one minute he did not check his BG before laying down to sleep much like a good driver just once not looking both ways before pulling out into the street. I used to ask my son to just take 30 seconds to test and correct as often as he checked his messages. Easy to say. But we are all only human. Please be careful and take good care. The odds are in your favor and we really believe a cure is on the horizon. Best wishes to you and all the others dealing day to day, hour to hour, and minute to minute, with the testing, diet, injections, and worries!
We joined a JDRF walk last summer with 81 of Billy's family & friends, plus a walk was held in Rochester with his camp co-counselors. All together we raised over $18,000. This summer a walk is being held in our hometown because of the large response. If Sonia Sotomayor makes it to the Supreme Court, we hope for a cure very, very soon! For now, we just pour everything we have into the camp that he loved so much, and the JDRF walks to raise money for research.