The support I have gained through online discussion groups is priceless. I have received a great deal of comfort from my participation in these groups. They have enabled me to connect with families from all over the world, many of whom are fighting the exact same disease. I have often come to my computer in the middle of the night, when everyone else in the house was asleep. I can express my fears at 3:00 a.m. and know someone will always be there to reassure me with the knowledge that they have felt these things, too. That’s one of the most beautiful things about these groups. Someone is always there, even in the middle of the night.

How ironic that we subscribed to this list in a moment of panic, with a black cloud lined with despair lingering above. But now we can say we have lassoed cyberspace, and here, among new friends, we have found and we have shared love, hope, support, informative information, mutual stories, mutual questions, thoughtful and sincere answers, honesty, disagreement, pain, inspiration, fundraising, friendship, humor, and enjoyment, as well as understanding. This list reflects the roller coaster of life. Activity on this list enables individuals to place that initial black cloud in their back pocket, hold sunshine in their hand, and watch hope dance above.

I try not to be too active on the online support group because hearing lots of negative or scary things isn’t helpful to me. I don’t think people share enough of the positive. Clearly, everyone is different. But, for me, focusing on the positive is what’s getting me though this. It’s self-preservation for me to stay in my happy place.

I love the Rhabdo Kids group on Facebook, and I met a lot of parents at the very beginning. Finding other moms who understood was hugely helpful, and I was able to hear from other moms who had gone through exactly the same things as I was. I am very statistically driven and I wanted to know everything I could know as quickly as possible, and I couldn’t find much else about this online.