What does it mean to be ‘Rare’? There are people in life that strive to be ‘different’, ‘noticed’….rare even. Yet, my son is rare and I wouldn’t wish it on anyone. He is not the ‘rare’ type of ‘cool’ or ‘individual’ of his own accord, his rareness was shoved on him and he had no… Continue reading Being Rare
A thought that goes through every parents’ head when it is swimming lesson time. A rush to get there straight from school and it is slashing down with rain. ‘Rush’ out of the car, try to get both kids changed on my own, quickly. William cries on edge of the pool because he wants to… Continue reading Aaaaaaargh – Friday Night Swimming Lessons
To my daughter Phoebe. Your brother was diagnosed 3 years ago and I wrote all about my feelings of diagnosis back then and since in my blog – My Boy Duchenne & Me. Those feelings don’t mention you all too much, even though you were only 8 months old, but you were and are there… Continue reading 3 years ago today
I’ve just done my first run of the new year now the kids are back to school. I’ve not run for a couple of months and that is largely down to the fact that I have allowed other things to take priority. Not any more. That telephone call can wait; that email can wait; that… Continue reading Running through January
There has been a lot going on in my paid work/voluntary work/motherhood/wife/duchenne mum life over the past couple of months. It is not that I haven’t wanted to blog about how I feel; but that I just haven’t had the time….and that is something I need to re-address; me time, my fitness and my health.… Continue reading Steps …
Today I am a very proud mummy of two amazing kiddies. Aren’t we all, I know, but I’ll take this one a bit further. Exactly this time last year I attended a parents evening (on my own) that left me crying, desperate and struggling to know if my son would survive at school. One year… Continue reading Proud
Such a taboo subject …… but affecting so many. I don’t think many people in my world haven’t been affected by depression – either themselves, their family or friends. It is not just people who have over stressed jobs, can’t pay the bills, have ‘worries’ who are affected. This can happen without your control, it… Continue reading Mental Health
This video outlines my blog posts on here of my son’s shock diagnosis in January 2016 with Duchenne Muscular Dystrophy (DMD) until present day. The titles tell their own story of my journey into accepting and coping with my son’s life-limiting condition. This song has been on my mind for many months, it just speaks… Continue reading Faith
World Duchenne Awareness Day falls on 7th September every year. This is in recognition of all those with Duchenne and those that have also left us too soon from this devastating condition. Unfortunately this is our 3rd time of raising awareness on 07/09. Let’s hope you can support us with more of William’s red balloons… Continue reading Red balloons 🎈
I shed a little tear tonight as I watched and re-watched the video of my little William ‘running’ at sports day today. It’s really tough day in day out seeing your boy’s differences to others, seeing him struggle with some of the simplest of things in life. He does however do it with the most… Continue reading The day of dread – or not?
My Boy, Duchenne & Me 