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…

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

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

We are all our own rare breeds aren’t we? We all have our own little quirks, habits, rituals, behaviour, manners ….. these can be annoying or endearing – it all depends who you are and who you affect with them. The majority of people choose to behave in the way they do – learned or… Continue reading What is rare?