So who am I?

Mum, friend, nurse, wife……

We moved down to Brighton in September 2017 and it has been the best thing we ever did!

I never knew my father, he was stationed at Sandhurst Military Academy and he was a Major in the Iraq army.  He courted my mother who was 19 and he was nearly 30.  She fell in love with him and she got pregnant, shock horror!  Unfortunately for both Mum and me he did not stick around when I was born although if I had been a boy?  It is ironic though that he has four grandsons and Jack my baby is the spitting image of my dad, black hair, black eyes and olive skinned.

I wont bore you with my growing up years although I can say I was a bloody nightmare at times.

I met my first husband Roger at 15, at 19 we got married and I had Daniel my first born at 21.  Unfortunately this marriage failed, however we have remained friends.

In 2002 I married again to David, a man I fell in love with when he did not bat an eye and changed Jack’s nappy who was 10 at the time and let me tell you its completely different to changing a baby’s nappy!  David has been my rock over the years and has supported me through so many anxious times, has had the brunt of my anger, tears at dawn and emotional breakdowns and yet is always by my side supporting me when I need it.

In between having children I worked; I was cleaning peoples houses, doing a weekly paper delivery, selling children’s clothes, account manager in a hotel, working for an FMCG company, any job that I could fit in around the children.

When Jack was diagnosed at 14 months with FXS I decided I needed to understand the disability so gave up work to concentrate on finding out more about this failing of mine and believe me that is exactly how I felt.  Being told you are a carrier of this defective gene and you have passed it on, not to one son but three is the most devastating thing to be told and even now years later hate myself because of this.

I joined the Fragile X Society which at the time had about 1400 members (not many diagnosis in the early 90’s) and also joined the committee.  As a rare commodity, me having three sons with this disability I was asked by the society to promote and raise awareness and spent the next 18 months giving TV interviews including Sky Living, Sky News, the BBC, and quite a few magazine articles including a two page spread in the Daily Mail.  The Fragile X Society with the support of its families raised the profile of this disability considerably and remains doing so http://www.fragilex.org.uk/

At this time I was also approached to be part of a group of women who all had children with special needs and complex disabilities to support a local further education course on special needs.  This course was to educate the students on what challenges they could face when working with these children.  Those that attended the course  were working as childminders, SEN teaching assistants, Health Visitors, and even nurses.  It was such a wonderful programme to be part of as everyone who was on the course had a genuine need to learn and develop their skills when working with these children.  I was lucky to be a part of this for some years and in a way it was therapy being able to talk about the boys.

All the boys are now men, and we have had so many challenges, anxieties, achievements, sadness and joy along the way and I can honestly say it has been one hell of a rollercoaster ride at times but I love them all so much and when I get a cuddle from Jack which is rare, or a laugh out loud moment with Dan, and just that incredible smile from Jared all is good with the world.  And Elliot, proud, loud, clever, strong, nerdy, and always on the end of the phone if I need him…… Thank you.