So much has happened in 2019. We have so much to be thankful for, so many people to remember who have helped enhance our lives, and all for the same reason – William. His story has touched so many. At the very start of this year I made two big choices to step down from… Continue reading Reflection
7th September is a date now etched in my diary, not for anything other than to raise awareness of the rare fatal genetic condition my son has, it’s not an Anniversary I wish to celebrate, but one I feel I have to. 7/9 depicts the 79 Exons on the Dystrophin gene. Just one small fault… Continue reading 7/9 Duchenne Awareness Day
Today marks the eighth hospital visit (plus opticians) this summer holiday for little William – I am now fed up with it, I can only imagine how William is feeling. (And little sister Phoebe who has also come to every appointment too) It’s amazing what one email can do…. 3 months ago a simple message… Continue reading A summer of hospital
It’s like being kicked in the stomach or stabbed in the heart when you hear the words at your son’s 6 monthly review of ‘no improvement’ or ‘decline’. I hadn’t thought we would hear such things for years, as on the surface William looks like he is doing so well. He is growing, developing, having… Continue reading Kicked in the stomach
As many of you know our Big Build started nearly six weeks ago now. We have done so much to enable us to get to the start point, just to be able to say ‘Yes let’s do it’. Not just the saving, but the amount of meetings with advisors, builders, architects… just to make sure… Continue reading There is overwhelmed, then there is me right now
I’ve written before about ‘me time’ and focusing more of my time on the things that are important to me. But, until now, all I’ve really done is added things to my schedule of life – like running. This is great for me mentally and physically, but really it’s just adding on top of all… Continue reading Balance – getting it right
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
My Boy, Duchenne & Me 