I’ve secretly had a very hard month – I’m hiding it mainly because I’m scared of what it may be. I’m also fed up and scared of people being bored of me; I’m not the fun loving person I used to be. I’ve got to accept that maybe I won’t have as many friends; definitely… Continue reading A quick cry & carry on

Being a parent is amazing, you get to watch your children flourish, develop and expand their minds daily. Being the mother of a disabled child is also all of the above, but also much more. What you also have is the heartache of watching other children ride scooters, bounce on trampolines, run, jump…… All with… Continue reading Milestones

I cannot comprehend to anyone just how hard, life draining and tough this past year has been. In a way it’s got ‘easier’, but I’m so fearful that it’s just never going to be easy; its never going to be ‘normal’ and I’ll always carry this pain and heartache with me every day. I want… Continue reading A year ago today & this is me now…

I decided back in November 2016 after attending the Action Duchenne Conference with Matt that the time was right for me to start my journey on confronting DMD. So, as it happened, an advert came through my email asking for new trustees to apply to Action Duchenne. Well, I’ve experience of being a chair of… Continue reading Well that was overwhelming….

It’s now 2017 and it is a new year. It won’t be a ‘new me’, as I have already become a new person in the last 11 months whether I like it or not. I won’t make any new year resolutions but, will say, that I am so lucky to have wonderful, thoughtful and dependable… Continue reading A new year

Well there you go, I had not expected that telephone call whilst sitting in John Lewis with mum and Phoebe a week before Christmas. It has been over 4 months since I was telephoned and informed that I was a carrier of DMD gene – it was very hard to accept and not feel to… Continue reading The genetics of it all …again

Tuesday 13th December Our little boy had his first nativity play at nursery school. He choose to be a King or as he calls it a ‘Wise Man’. It was such a lovely play – all the children joining in, singing, having fun. Such a tribute to the great teachers at the school. Some lovely… Continue reading Nativity Play

We started our Christmas at the end of November with our trip to center parcs. What an amazing five days with my little family. Swimming every day, lunch out, fireworks, woodland lodge snuggles by the fire. W and P getting on really well – except for the sibling love especially in the bike trailer!! We… Continue reading The run up to Christmas

I wasn’t sure quite how to express myself and my feelings without getting either upset or very angry to those close to me. Counselling was offered to us all by GOSH. After 9 months of finding controlling my feelings and talking about our boy very very hard I realised I needed some help. I needed… Continue reading Counselling

It’s amazing what people say or the actions they adopt to you when you have bad news. Now, I was fully aware that people would not know what DMD was – I didn’t! What I wasn’t prepared for was quite the diverse reaction it would cause. ‘Maybe it’s fate that he got you as parents… Continue reading What people say…