Afraid of the WWW.

I feel like I haven't blogged in ages. We've been busy but to tell you the truth I've been a little afraid of the computer, not really the computer but the whole world wide web.

During Mike's first deployment to Iraq in 2003 I was going to grad school in South Carolina. Mike deployed out of Ft. Carson, Colorado. I was busy at grad school with friends and classes and work and I felt a world away from Ft. Carson and all things military. Deployments were different then, I received emails from Mike fairly regularly but we spoke on the phone only a handful of times. I happened upon a listserve moderated by a veteran from the unit that Mike was serving in. Initially I loved all the information! But then when the unit started to experience some casualties the listserve that I had loved so much as a source of information became a sort of email torture. I dreaded logging into my email account and seeing casualty notices and obituaries, I unsubscribe from the listserve. I also didn't watch the news for 2 years, I would turn on the Today Show after they'd run through the daily headlines, my roommate and I watched endless episodes of Law & Order, American Idol, and Friends.

When Olivia's Developmental Pediatrician at the hospital in Washington told me that he suspected that Olivia might have a type of MPS he told me not to spend too much time looking online. He was sure that Olivia did not have Sanfilippo syndrome and he didn't want me to be frightened by what I read online. I didn't listen to anything the kind doctor said, I went straight home to google. The doctor was completely right, hours later I was sobbing in front of the computer. I shut down the computer and decided to listen to the doctor's advice. It turns out he was wrong but the damage was done, I had been scared by what I read and I was weary of the information I found online about Sanfilippo syndrome.

It's taken me almost 2 years to work my way back to the Internet as a source of information about Sanfilippo syndrome. There's a private facebook group for families and individuals dealing with MPS. Initially I fell in love with this group, so much support, so much information! But the last two weeks have been awful. Three beautiful little girls with Sanfilippo syndrome died within 4 days of each other, they were 12, 13, and 15. I didn't have the pleasure of knowing these girls but they are part of our small Sanfilippo community and their deaths are felt deeply.

I'll be back but it is taking me some time to process it all.