I very thankfully recently found the lovely Lauren of SWAN UK, a fantastic Non Profit Group that brings together parents of SWAN’s.
Most of you are probably wondering what a SWAN is, Grayson is a SWAN – a child with “A Syndrome without a Name” in otherwords a child who is disabled and can not be diagnosed, if you follow me on Twitter you will know that we have recently been told by the geneticists at London that Grayson is extremely UNIQUE and there are no other children like him in the UK, this didn’t upset us, we know our little boy is special, he is different, I have scoured the WWW trying to find another child like my little boy and as of yet that has not happened.
They told us it was unlikely we would ever find out what is “wrong” with Grayson and that he shall now probably become part of a non-invasive research program to see if he can not help children in the future.
I can’t say Ashley and I were happy with this answer, but we have accepted it and feel pleased Grayson may help future children.
Not 5 minutes had this happened that then our lives have been turned upside down again, it has taken me a few weeks to share this information but you my blogging family have helped me so much in the past I wanted to continue to share Grayson’s progress, a few weeks ago I noticed Grayson would have bouts of laughing, followed by being up from 3am most nights just randomly laughing in the dark, I knew in my Mummy gut something was not right, after discussions with his paed it was decided a MRI needed to be actioned, this shall take place on the 11th, I am apprehensive as they have told us they think he is having Gelastic Seizures, causes of these seizures can be numerous things but they feel it maybe either a Brain Tumour or problems with the bleed Grayson previously had, I think I always thought the day would come that something more serious would happen with Grayson, that his life maybe in danger, but in my heart I thought we would have more time.
I hope they are wrong, I hope we have more time, I hope my sons brain is not being plagued again by serious issues, I am not sure how much more he can take and why should he.
So back to SWAN UK and the video at the top of this post, I found this through their You Tube channel, it was posted by a fellow SWAN mummy and it is a brilliant description of how our lives feel. I thank her for putting into words my feelings in my heart so I can share them with you my friends.
I thank you for taking the time to read this post and I thank you for your friendship for not only myself but my whole family.