I originally started this blog to share my son journey as a SWAN (Syndrome without a Name) & I now include his younger sister who was born profoundly deaf so has her own journey too..,occasionally I will mention my older 2 kids who have no issues, it is just a place where I can get my feelings/thoughts out of my head & also to raise awareness...
Undiagnosed Children's Awareness Day
Over the next couple of days I will be make a couple of posts to help raise awareness about SWAN .
So I apologise if you feel I'm bombarding you with this but its close to my heart and I feel its important to get as many people aware of what SWAN is all about and get us recognised instead of being shoved into a corner and ignored.
Before Roo entered our lives I had never heard of SWAN and if someone mentioned it to me I would not have a clue what it was all about... it was a different world to what I lived in...Along comes Roo and suddenly we were thrown into the unknown, wandering aimlessly during his first year, feeling so alone, thinking we were the only ones who had a child that was undiagnosed, not knowing who to turn to for help as we didn't "belong" to any of the groups that were out there as they all required a diagnosis/reason to why your child was disabled.
Then one day I came across a newspaper article that showed a picture of loving parents holding their daughter Jessica who was a SWAN...My mother actually read it first and gave me the paper saying that "I think this is Roo - a SWAN" so I read it and decided to google it...found a page on facebook and thought I would join it to see what it was all about...
I was welcomed with open arms and was amazed at the kindness of the other swan parents. As I started to read through the posts and learning all about SWAN I realised that there was another world out there and it was one that we belonged to. It opened my eyes to all the difficulties SWANS face throughout their lives due to being undiagnosed, how we have to fight for everything from therapies to equipment. No longer did I feel alone, I was now part of a community that understood my feelings, thoughts, worries, turmoils , understood all the tests that needed done and so on but as well as all that we support each other no matter what, when one of us is down the rest of us are there with virtual hugs and comforting words, when we want to rant we do so knowing that we all understand where we are coming from , when our SWANS do something that may seem nothing to others in the "normal" world its a huge achievement to us and we all celebrate it with each other. We are never alone as we are one big family...