This year has definitely been a year of both tears and happiness. The most memorable part for me was ultimately my wedding in September. Months of stress planning and saving for it all for one day. What a day it was though, I felt like the princess us ladies dream of from being young fireflies. A day in which I was so proud of my 5 children, and surrounded by friends and family. A mixture of emotion as I was getting married but the fact my mum and nana wasn’t there to see my special day was so overwhelming. It was an amazing day and up to now the best day of my life
And not forgetting the best hen weekend ever in Dublin ::)) Fabulous
The children are obviously another year older. More symptoms of Facssyndrome are presenting themselves to. This year we have been told that Lauren
Will have to be operated on as the Botox she has and also her splints are no longer as effective as what they were. It is a point where we knew it was coming, but the older she is getting she is more aware of herself and the fact she is not as good as other children around her at walking. Something we didn’t anticipate happening at the start of the year was being told ERin is partially deaf. To help her more she will be fitted with a hearing aid. WHen me and Joe were told this I was devastated. I had visions of what my granddads used to be like really big and making a whistling noise. I’m glad to say that they are no longer like that anymore. They are very small and come in lots of different colours so Erin will no doubt have the pink one. Incontinence is an issue and we’ve been told the girls may have to be operated on. With regard to my epileptic fits, my seizure pattern has changed and I’m now having more generalised seizures. I really hate the fact of me having fits, as I totally blank out and end up unconscious. It’s so scary and the fact they are unpredictable as ever scares me all the time.
Within the last 3 months I’ve gone on to co-found THe Facs Syndrome Association- a parent support group to help and advise families affected by Facs. We have an educational officer who will help offer advice to any parents who need it with regards to their child and Facs. Branches of FSA are now also opened in America and New Zealand as Facs is a Global Condition. That’s why awareness is so important. On board we also have 4 medical advisors who are at the top of their field in the work they do genetics and paediatrics. We are also being guided and supported by The Thalidomide Trust. They have set up a time table for us to follow and at the moment we are ahead of the work that was intended to be done. The next 6 months is all set up and planned and big things are due to develop, but at his time I can’t mention………so watch out!!
So, to all my followers, readers of my blog, my inspirational ladies, work professionals who in 2013 will be meeting with, friends and family……Hope you all have a fabulous night out celebrating HAPPY NEW YEAR