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!
Last night saw me hit a wall and crash. Things have been building up and my ‘mask’ has been coming out more and more. Finally my mask broke and I broke. There is just so much going on in my head that I felt like I was going to explode. It was tipped over when… Continue reading Spinning plates eventually come crashing down
Today we had more appointments for William at Addenbrookes – Lung function & Cardiology. I’m proud of him again, as you can see on his post he was amazing. This is not normal for me to say but today I too was proud, of myself. Today as we walked into his Cardiology appointment, his paediatric… Continue reading Proud (of myself)
So this happened earlier this week. Another huge step for us as a family and another bleak reminder of what Duchenne is doing to our precious little boy. As he cannot climb into the bath (and never has been able to) part of our adaptations on the house last year included planning a hoist system… Continue reading The hoist. The sling. Our hammock
It’s fun BUT it is for a cause.. Please educate your children as to why they are wearing jeans/non-uniform today. Please donate that pound. You’re doing it to help raise vital funds for children with genetic disorders – like William. He needs a cure, he needs your help. You don’t know if your child will… Continue reading You’re wearing Jeans because THEIR Genes need YOU!
A picture tells a thousand words but in this case simply, Duchenne. My daughter bounded up the hill whilst I had to help my son struggle up this hill like we seem to do with so many literal ‘hills’ through his life. There are smiles, but behind that there is severe anxiety. Anxiety which breaks… Continue reading Anxiety
To Care or To be a Carer….. Is this the same thing? I often ask myself this question when I’m reminded that I not only ‘care’ for my son, but I am actually a ‘carer’ of my disabled son. Many people may not realise that a loving parent to a disabled child is actually not… Continue reading To Care
49 Days, 7 weeks into this journey! Trying to protect our son from the unknown. The bad days/moments are becoming more frequent. This past week was very hard, very emotional. ‘Mummy school’ is feeling low and deflated. ‘Mummy school’ still has her work to do. ‘Mummy school’ is starting to feel hemmed in. It’s frustrating… Continue reading Shielding from Covid-19