Saturday, April 25, 2015

The Friends I Have Never Met

The world is a very different place, than it was when I was young. Sometimes it is hard to remember what it was like before the internet. It was a simpler time and I do miss it sometimes, but then I think about how different our journey would have been without modern technology. The countless hours I have spent researching Emmett's symptoms, new therapies, and doctors, would have literally taken me years to navigate, without the internet. I never would have heard of some of the best treatments out there and I don't even want to think about how many times I would have gotten lost on my way to one of Emmett's appointments, without navigation on my phone.
One other thing that would have been profoundly different, without modern technology, is my network of friends. I am blessed to say that I have an amazing support system of family and friends who love Emmett unconditionally, but I also have a whole other network of "friends" that I have never met. These are the families that I have connected with through online support groups, that never would have existed without the internet. These are people from all over the world who are on a similar journey. Some of them have children with only a few similarities to Emmett, while others have the same diagnosis.
Even though we have amazing family and friends, having a child with special needs can still be lonely at times. However, being able to connect with other families, who face similar challenges, has made this journey a lot less lonely. These groups have been a great place to vent, share ideas, ask for advice, and share exciting progress. The past few months have been especially exciting because we are beginning to connect with other families that have children diagnosed with Xia-Gibbs Syndrome. When we were given the diagnosis in November, we were told that there were only four other known cases. We don't know much about the syndrome yet, but it has been interesting to compare notes and see how similar our children truly are.
I may never meet a lot of the people that I have been in contact with and I may not even know much about them, but I do know that having them to relate to has been a lifeline for me. The internet can be a dangerous place, but it can also be a great resource to connect with people in a positive way, to encourage them, give them advice, and let them know that they are not alone. So, thank you to all of the friends I have never met. It is good to know that I am not alone in this journey and I hope that I have been able to help some of you, like you have helped me.

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