When Freddie was born and we were told he had an undiagnosed syndrome I remember feeling so worried and alone. I couldn’t understand how they didn’t know what was wrong with him. I felt like we were the only family to be going through this and it was a really scary time. I would sit for hours every evening searching the internet trying to work out what type of syndrome Freddie had. I would join groups on facebook to try and get some support but I never felt like I belonged as everyone had a diagnosis. Then in July 2011 when Freddie was 13 months old I came across a group called Swan UK on facebook. A group specifically for children who have a syndrome without a name! I was so excited to join. It was quite a small group at the time and everyone was so friendly and welcoming.
A couple of the group members had blogs, theaandnatesmam and littlemamasaid. I had never heard of blogging before and was intrigued to find out more. So I sat down one evening to have a read. Both blogs made me cry. They both had very touching stories but the tears weren’t just for that. I felt so much that I could relate to what they said, like i wasn’t alone anymore. Our journeys weren’t the same and our children all had different issues but reading their stories made me feel like I had found somewhere I could belong and this spurred me on to start my own blog. I wanted to share Freddies story in the hope that one day somebody in my position may read it and feel how I felt. That maybe I could help somebody else with an undiagnosed child feel less alone.
My first blog post I did I wrote about Freddie and our journey so far. I found writing everything down really helped to get all my feelings out, my own therapy. From that day on whenever things got tough I would blog about it. So many feelings that I hadn’t spoken to anyone about I shared on my blog. The grief of having an undiagnosed child and the guilt I felt.
The Swan uk group has grown alot since I first joined and there are now alot of parents and grandparents that write a blog. I look forward to reading everyones blogs, it’s such a nice way to keep up to date with each others stories, to offer each other support and share information. They can all be found here on the Swan UK undiagnosed website.
Starting 21st January Swan UK will be starting to take nominations for the Swan UK blogging awards. More information on how you can join in or nominate can be found here