But they won’t all…. I woke this morning after another disturbed sleep and remembered thinking when the kiddies were little that sleep deprivation was a short lived thing. I remember that sick feeling of tiredness every morning trying to remember how many hours sleep you’ve had; how many times you got up. I remember feeling jet… Continue reading They’ll grow out of it..
So fed up of those that make decisions, not understanding the knock-on effect of those decisions…. DLA reapplication done in Nov, only awarded William with ‘middle rate’ for personal care AGAIN. Fuming. How much more care do I need to do aside from all day and night to get higher rate? Telephone call made after… Continue reading Give me a break
#worldcancerday It’s not a journey I wanted, but one I’m glad I got checked and caught as early as possible. It’s still a journey of medication, menopause & being ER positive….but a better option than the alternative to not getting checked. #checkyourbreasts#breastcancer@breastcancernow#nhs
This is life with Duchenne. Trying to live life to the full, filling it with joy to often mask the pain. The experiences we are offered are often so amazing, so joyful, so gorgeous to see a smile on William’s face. We are always so grateful to receive so much love. Long may it continue… Continue reading More lows than highs
It has been a while since I last blogged. A ‘memory’ came up as its mental health day and I stupidly read the blog attached to it. This was written years ago and I look back and want to give myself a hug. I hadn’t even been through cancer then! Reading my past helps me… Continue reading Learning to live life for him…not the condition
In July 2023 I wrote this after suffering for quite a while. I didn’t publish it because I didn’t feel strong enough. It’s not just my journey. Many struggle in silence. “I’m struggling a lot. My mental health is in real decline and I’m finding things hard.My cancer medication is giving me so many side… Continue reading #tinypill
We’ve had some tough times through diagnosis and beyond. It’s always hard when we hit the time of year when life changed for us as a family. Mixed in with January blues, we always find this week tricky and this year even more so. Your mind flashes back to that room, those words, the terror… Continue reading 7 years …..
It is so hard to witness your child’s abilities disappear before your eyes….to say to you “I can’t do it, my legs aren’t working”, to cry over the fact that his legs aren’t supporting him. Our life is changing and we are veering towards another stage of Duchenne – fast. I’m not sure if we… Continue reading Declining
I am sat in the car outside hospital waiting with my boy for yet another appointment…this time Endocrine. We have just been to Riding for Disabled then hotfooted over to Addenbrookes. Standard busy day for a SEND parent. What made today even busier was trying to finish off presentations for my work whilst also trying… Continue reading There is no title for life right now…
Usually my blog is for Duchenne and the life it leads us to, but life changes and I still need to write…. I am not sure how to describe the last 4 months. “Cancer whirlwind?” Feeling like I should have been dealt all my cards already with William’s diagnosis 5 years ago, to then be… Continue reading This one’s about Me!
My Boy, Duchenne & Me 