Technology:
Is it cheating to say 'the Internet'? I guess the web is the all encompassing technology. But I am very thankful for it. 1997. I had no computer. I think Gene had some kind of work computer. But we didn't have one that I had access to. Casey was diagnosed with SMA in May of 1997. Who had ever heard of Spinal Muscular Atrophy before? Certainly not us. My sister contacted Families of SMA (now known as Cure SMA) and they sent her a bunch of information. I kept a box of their newsletters in our backroom. I couldn't look at them without sobbing. There was too much sadness. And back then there was NO treatment. Today there are 3! My SIL lent me a desktop computer so I could use the Internet to research SMA. For some reason we had it on the floor in the living room. It was probably because we had to hook it directly into the modem and it was only able to reach a certain area. So I learned about the Internet and AOL and Yahoo. I learned about SMA. I also found my lifeline. There were other families out there with the same diagnosis. We weren't alone. I know I did a lot of emailing with families back then. There was no Facebook or anything like that. One mom set up a website and a board where we could write back and forth to each other and ask questions and give support. A true lifeline. There have been families that I connected with back then that I am still friends with today. And that's kinda cool.
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