Writing a blog about family life – good times and bad – has turned out to be a great comfort to Neil and his family as well as a support to other families. Read More...

Two local charities that were providing support to Callum are cutting hours. Why? I don’t know, but I guess it is due to the huge demands on care. I feel like carers are at the bottom heap of society - we can’t get jobs because we work so intensely for another person, we can’t secure decent pensions or life insurances because we can’t work, we can’t have holidays because there aren’t sufficient provisions for respite care. As a parent you have to find never-ending reserves of energy to look after your child and battle the system. I fought the system for six months to be allocated one extra nappy a day. Somehow you have to be this super human person. Read More...

Callum has had a very bad week, one of the worst in recent months. He has been sick, but not from a bug, he just gets like this from time to time. I fear it is a reflection on how I am feeling. I went for Reiki on my shoulder because it was so bad and that really made me feel better so I later did some on Callum before I put him to bed. When he gets better I’m hoping we can all snatch a few days on the Isle of Wight at a friend’s cottage. Read More...

Right now I’m struggling. If you are the parent of a disabled child I am sure you will have come to realize it is not just emotional pain you have to deal with but also physical pain. Read More...

I did a bag party as part of my business at the weekend. It’s always motivating when I meet customers who have recommended my products to friends. I sold a few bits but because of the weather not many people turned up - a shame after all the effort! All the lifting of heavy stuff isn’t helping me physically which is why I prefer the internet as a way to sell stock. Finally after months of trying to get the website sorted it is up and running and looks fabulous. I can now see my hard work and ideas finally coming to life. I’m getting better at sourcing items and I’m now getting products from various countries and have two companies making my own products I have designed, which is really exciting. Read More...

I have always been strong minded and I suppose difficult. I have also always known that life is not an easy ride. It is the blood, sweat and tears you put into something that makes you value and cherish it all the more. But of late, the extra work I have to put in with Callum and my business is getting harder. Most nights I am not in bed before 2am because there are so many emails to send, products to upload onto the website, letters to write and details to add to the database. I always thought I could break the mould; I could be a single parent with a disabled child that is well cared for at home AND have a business that financially supports us. I’ve always kept this vision in sight and ploughed through the hard times, gritted my teeth and thought just get on with it and stop moaning because there are far worse situations than mine. Read More...

I am lucky to have a care package in place for Callum as I know some families struggle to get even basic support. And the care assistants are really are great. But at times I find it difficult having so many people coming and going from the house. It takes Callum’s care assistants a few months to feel confident with him – feeding him, giving him physio, administering his seizure drugs. But sometimes I want room to breathe. Read More...

Callum’s eating better since he’s not using his special seat at the dinner table - sometimes I think he gets frustrated at the lack of control he has in his own life. I’m trying a different strategy and not being as strict when he’s not eating and today he finished off a half tub of bread and butter pudding as well as an adult portion of moussaka! I fed him by the sink whilst he was playing with water and because he was so distracted he ate better than I have ever seen him. Callum has taken a shine to drinking out of a cup instead of his trainer cup. It makes such a mess as he spills most of it down his front but it’s important that he learns new skills. He seems to have no understanding that spilling a drink all down yourself is bad, in fact the more mess the better!! Read More...

Callum is due to have an operation later this year on his leg and hip. His hip is dislocating because of the way he stands. The surgeons intend to deepen the shelf of the hip and pin his legs, shortening one so that they are the same length. It will mean breaking part of his leg and Callum being in a hip spica – a special cast used to immobilize the hip joints - and a brace for eight weeks. We’ve been travelling to and from Bristol Hospital every 12 weeks because of Callum’s impending op - a six hour journey there and back, which is hard on all of us. Read More...

I feel really ill. I can’t look after myself let alone Callum when I feel so ill. I have a banging head and temperature but did the basics with Callum and he seemed happy although he’s been in his pyjamas all day. Little Guarin, who is only nine-years-old, held the fort and checked on Callum and made me a cup of tea and tried his best to look after me. He brought me in his blanket and little snowman to look after me (bless). I am wonderfully lucky with him that he is such a caring boy, but I know he feels so terribly frustrated and cooped up when we can’t get out. Read More...

Callum woke up in the night and his seizure alarm sounded (loudly) to let me know! (I worked with a small engineering firm to develop a monitor for children with severe epilepsy and after two years of testing it is now working. It's got no straps and can be worn at night. Once the monitor detects a rise in heart rate, the alarm sounds so if Callum starts to have a fit, I know about it immediately.) Thankfully it wasn’t a seizure, but Callum was grizzling. His nappy pad had leaked all over his bedding. The pads are really too big for him but they’re the only size we can get on prescription. They’re pretty useless and everyone I know who has them complains about them. Read More...