On the 8th March (a year and a day to the day I left the pediatrician’s office ) I had another eventful day in my life. It was the day I joined the SWAN Facebook group. I didn’t know then how important it would be to me and how much it would change my life. Nearly four months on and I feel I have found a second family, a virtual home, a shelter, a place where I can say what I feel and I am completely understood. It is my special place – my little hideaway. Let me tell you more about it so get the picture.
It is a place where you can cry, rant, vent and scream (virtually) and no one thinks you are nuts. A place where can laugh, cry with joy, celebrate and embrace your SWAN’s successes (however small) and you are instantly surrounded by virtual hugs and good wishes.
It is a place where you can ask questions and feel safe in the knowledge no one will think you are strange or silly for asking. Instead you get what you need – answers and a multitude of them at that. Genuine answers, detailed answers, answers from experience, answers from knowledgable experts – namely SWAN Parents.
It is a place where you can make suggestions and recommendations, so other parents can benefit from your experience, in anything from medical appointments, to medical equipment.
It is a place where you can upload videos or photos of your SWAN and have others share in their success, similarly you can share in other SWAN’s achievements. There is nothing more rewarding than someone posting a video of a SWAN walking, when it was thought that they never would. The feeling is indescribable and a warm fuzzy feeling of pride and hope tingle through your body.
It is a place you can come to when you feel no-one is listening and you feel like you are getting nowhere. No sooner have you posted a comment on the wall, a notification will pop up instantly to say that someone has replied. That person will remind you with their kind and caring words that you are not alone and that there is always someone here to listen. You could almost say that there was 24/7 service on the group as, some of our little SWANS wake in the night due to night sweat, night terrors, restlessness or any other number of reasons. So there is always someone on the night shift! However in some cases it is nothing to do with our SWANS, it is just that we the parents are unable to sleep – usually because of the million and one things we have going on inside our heads.
It is a place where you can come to after a long , exhausting day and relax. You can check in on your friends and see how they are doing. There is always someone celebrating in one way of another, there is always someone who needs a pick-me-up and there are all the bits inbetween from new members to new posts on people’s blogs.
When it comes to the SWAN group I feel like I belong and I feel extremely supported and know that even though some of my fellow SWAN parents live miles away they would be there for me, even if it is just virtually and I would do exactly the same.
If anyone reading this has a child without a diagnosis, you need to become a member of SWAN. I promise it is the one of the best things that you will ever do. Our group is constantly growing and the support we give each other is incredible.
So there it is, that is why my special place is so special to me. I love being a member of the SWAN family. We are family…our SWANS bought us together and our unity made us friends…